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How do you know if someone is in the final stage of Alzheimer's disease?

58 answers | Last updated: Jul 17, 2014
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Paula Spencer Scott, contributing editor, is the author of Surviving Alzheimer's. A Met Life Foundation Journalists in Aging fellow, she writes extensively about health...
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answered...

When a person with Alzheimer's disease reaches the final stage, he usually displays the following physical and cognitive signs:

See also:
Find Memory Care Near You | More True Stories: Moving Mother to Memory Care

See all 908 questions about Alzheimer's and Other Dementias
  • Unable to walk even with assistance
  • Requires total care with bathing, dressing, and grooming
  • Verbal skills are limited; the person may just be able to say a few words but is unable to have meaningful communication
  • May not recognize familiar faces
  • Incontinent of bowel and bladder
  • Poor appetite, needs cueing at meals or needs to be fed

It's important to remember that each person is an individual and may not experience all of these symptoms. However, these are the most frequent signs that a person is in an advanced or the final stage of a dementing illness.

 

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tonnyton answered...

although my mother experienced all of the same symtoms, she remained peaceful till the end. she was unable to walk speak, or swallow. the blank stare allerted me to the fact that she didn't recognize me. comforting the family member is essential.i talked to her, sang to her, and just kissed her. i could see her pain and fear. that would console her. i did my best taking care of her in my home. it was the hardest thing i ever had to do. it was 24hr. care. god bless anyone with that decision. follow your heart and think it over first. i have no regrets. i miss her so much. all of the pain is gone. now i can enjoy all the happy and precious memories. three weeks before she passed , i was diagnosed with breast cancer. the battle continued. don't know if she heard me,but i discussed it with her. it would have been too much to care for the both of ua.not long, she was gone.

 

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MargieB answered...

My mother has early signs of dementia and she has been experiencing panic/anxiety attacks for about 6 months but otherwise seems fine. My heart goes out to those who are experiencing the very worst of this disease, both as the "victim" and the caretaker. I know I will be there someday and am scared, really scared but for now, I enjoy all my precious time with my mom.
Stay strong and pray; you are not alone in this disease. God bless you.

 

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sanity answered...

god bless you all. i myself take care of my 77 year old mother with severe dementia/alzheimers. it is very hard and there are nights i cry myself to sleep. although my mom is here physically, her mind is gone and i miss her, i want her back. i have 7 other siblings, i dont get any help from them, maybe an occassional call.my own grown kids help me a lot but i no its hard on them to. she has no bowel control. is eating less, very poor eyesight and hearing, memory loss, agitation, combattive, pocessive, paranoid, repeats same line over and over.i could go on and on but you all live the same thing i do. im so sad, i dont no how to help my mom, a wonderful lady.thank you all for letting me vent.

 

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elois answered...

i do sympathise, my mum is end stage too, My sister are the only two people who still visit and talk to my mum, after nine cruel years,our own children although grown up.. just cant do it..God Bless

 

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Pamela D. answered...

I too am going through a lot with my mom. She is 74 and was diagnosed when she was 62. She has become combative, physically agressive and the only words she seems to know is "no!!! and cuss words". Bathing is a huge issue and toileting too. I don't know if it is the caregiver or the disease. Any suggestions, advise and prayers are greatly appreciated.

 

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Bless you answered...

I have a Mom who has dementia/Alzheimers and she lives in the family home with my Dad, sister and I. My sister is currently working full time and I have taken early retirement. I care for my Mom full time with the assistance of my Dad (85 years old) but it is getting very difficult. She can be extremely aggressive and combative cursing, hitting, kicking, biting and screaming. She hallucinates about going home to see her Mother and calls her husband (my Dad) at times her Father or simply does not recognize him at all. She constantly says people are coming into the house and stealing her belongings. Her doctor gave us a prescription for anxiety (one pill a day) which helped in the beginning (over the last 2 months). She is now taking (two pills a day) with the approval of her doctor which is at the lowest dosage. I am finding she stays somewhat calm but on a scale of 1-10 she seems to be at 6 daily. After reading all comments and looking at what could be the last stages of this disease. I find that my Mom falls into some of those categories. She was 86 years old (this year) when we were told she had this disease. She weighed 84 pounds the last time she saw her doctor. She says she is not hungary but I prepare her breakfast, lunch and dinner and urge her to eat. She says sometimes she cannot swallow and then refuses to eat. We currently have an appointment with her doctor next week to update her status and find out what we can do next. We want very much for my Mom to stay in the family home as we believe this will be the best quality of life for her. I cry all the time knowing I do not have any control over this horrible disease and try to stay calm during the bad situations. Thank you for listening and I encourage a reply for any assistance you can offer me.

 

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Fiona answered...

Thank-you for confirming my suspicions. Mom is experiencing all of these symptoms. I try to time my visits so I can feed her, since she is unable to use utensils anymore, and simply drops food all over. For the past 2 days she has been refusing to let anyone put her teeth in, so she is hardly recognizable, and it makes the few words she attempts even harder to understand. When I told her she looked like a prune, she stuck her tongue out at me...I laughed, because that's at least a tiny part of her feisty nature that peeked out. Usually she is totally passive. I mourn for the Mom I've lost every day. I know I will mourn for this one when she is gone, too. Whether your loved one lives with you or not, it's hard. I visit her 3-4 times a week, so she still seems to know me...at least I hope so.

 

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kilmatead answered...

hi everyone, just to wish everyone who cares for ,knows family friends which alzheimers /dementia.It is a very sad time of the year for all of us missing the one we love through this disease.

However we should,nt beat ourselves up , we all have friends and family that will need our support whether it cooking,visiting ,or even picking up the telephone.

No one likes listening to our woes 24/7 so lets put a smile on our faces ,be brave and try to enjoy this holiday .ok best wishes to all robby

 

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TilZ answered...

Seeing that my wife is showing all of the physical and cognitive signs for the final stage of Alzheimer's feels likesomeone has hit me with a two by four. After it sinks in I only want to see if I can just continue to get her to laugh and smile. Even though it seems that this is becoming a little bit harder for her to do, I know it will be those moments that I will remember after she is gone.

TilZ

 

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Fiona answered...

A friend whose father cared for his own father through the throes of dementia told me that he said it was like watching someone go through a revolving door. Sometimes the windows line up just right, and you can see through them to the person who is trapped inside of the brain that isn't working well anymore. Treasure those moments. As the disease progresses, they get fewer and farther between. Mom is gone now,(since early December), but the last couple of weeks were incredibly hard. She was unresponsive for the most part, yet knowing that she would be gone soon made me try even harder to get her to smile or acknowledge that I was special to her, as she was so special to me. Now that she is gone, I feel so diminished. I have been mourning for my Mom for over 4 years...now I'm mourning for both my Mom and the tiny lady I took care of for years. My heart bleeds for all of you who are just starting on this final journey. Know that those of us who have gone before you are sending you strength and good kharma. May you have a few fleeting moments of joy when your loved one knows you and smiles. May you know how much your care has meant to them even though they can't tell you that. And may you allow yourself to cry/scream and otherwise rail against a horrible disease that has robbed you of the one you love. God bless.

 

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MargieB answered...

What does "advanced stage" mean? Ready for a nursing home, no doubt, but end of life? years yet? Vegetative state? While my grandmother had this, she lived in Maine so I was not around her at this stage of her life. My mom lives in MO and is currently in assisted living but how much longer will I be able to leave her there? I know EVERY person is different but are there definite stages to expect? I can tell she's declining mentally but am scared as to how much longer she has? If I put her in a nursing home too quickly, she's going to run out of money and then what? She'll have to be moved to a Medicare-accepting facility? Will she receive the same quality of care? So many questions and just not enough definitive answers. So scary!
Marge

 

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Fiona answered...

MargieB, my Mom lived in an assisted living facility until the end. It was expensive and private pay, but had the capability of caring for her even when she was in the end stage. I moved her into the Reminiscence wing out back, totally protected and locked for her protection, over Easter weekend. She was gone right before Christmas. Over Easter weekend she was confused, telling my brother, "I don't understand any of this," referring to why I moved her into a smaller room. I did so because she had forgotten how to use an elevator, so was unable to get to the dining room downstairs and back to her apartment...she would be found by other residents, wandering around on the wrong floor and totally confused and lost. She was still walking then. A few months later she began to fall, and her walking became laborious shuffling, though she still tried to dance when she heard music. The staff was able to take over everything for her, including bathing, dressing, toileting, and ultimately even feeding her. Of course this all cost more than just the living facility, but I had been paying all along for the nurses to give her medications which she didn't even remember she took. It's my understanding that nursing homes are even more expensive than assisted living facilities...but Medicaid will pay for them only if you have spent all of the money down, and IF a bed can be found in a facility that will accept her. Thankfully it never came to that. I told my brother that I didn't care if we inherited nothing, as long as I could keep Mom in a place where the care was exemplary, as it was. In fact, I wrote a letter to the Chicago Sun-Time lauding the caregivers. http://www.suntimes.com/news/zimmermann/2957553-452/mom-turkey-bank-care-guys.html I hope you can keep your Mom in a place that gives her the same kind of care that my Mom got. Good luck.

 

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Bless you answered...

My Mom's situation has gotten worse and her doctor has suggested she see a psychiatrist. She was originally prescribed an anxiety medication which helped in the beginning. She has gone from one pill a day to a maximum to date of 3 per day. After speaking with her doctor and following her suggestions for the increased dosage, she advised seeing a psychiatrist. She has an appointment tomorrow and my Dad, sister and I will take her to find out what other options we have. My Mom continues to loose her balance and has fallen several times in the home. She gets very aggressive wanting to hit, kick, scratch and calls us terrible names. I have retired early to be a caregiver assisting my Dad with my Mom's day to day living. I am scared and anxious to hear what the psychiatrist has to say and hope that a change in medication will help her to stay calm.

I thank everyone who has shared their own circumstances as they have been very helpful to me and my family.

I will share the information the psychiatrist gives me in hope that it may help someone out there.

 

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dear one of Mort answered...

My husband, age 77 is considered to be stage 3 but he is still able to walk and is only occasionally incontinent of stool. Sometimes he refuses food and sometimes he will allow himself to be fed. He's lost ten pounds this past year. He sleeps most of the time but during the day he sleeps on the living room sofa that I have prepared to be protected from his urinary incontinence. He requires help dressing, bathing, often walking. Most of the time he appears disinterested in anything around him but then sometimes I think he listens and absorbs quite a bit. But I consider myself one of the lucky caregivers. He is almost never bad tempered or combative. He is loving and appreciative of the things I do. I also try to get him to smile playing on words, singing silly songs and telling jokes he used to tell. He tries to comfort me if I'm having a bad day and he corrected my pronunciation of a chemical name I'd read in the newspaper. He started having mild seizures. It's hard to make sense of the symptoms he exhibits. I appreciate the input from this group.

 

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Bless you answered...

Since my last writing we have taken my Mom to a psychiatrist and she was prescribed Seroquel along with Trazodone. During the last 4 weeks we had to ween my Mom off the old anxiety medication and start her slowly on the new. So far to date she is taking 1/2 pill of Seroquel in the morning along with 2 1/2 at night with 1 Trazodone. These medications are all at the lowest dosage. Knock on wood it seems to be working as she stays calm during the day experiencing only a little agitation during the sun downing period. My Dad, sister and I are all finally getting some much needed sleep which helps us to continue our care for her. While I am writing this I have the baby monitor next to me so I can hear her activity which helps me to be aware of her moves in the event she tries to get up without my assistance. These new medications could only be prescribed by a psychiatrist,therefore, at the suggestion of her doctor she referred us to one. It was a good decision and I hope this might help anyone out there experiencing the same situation.

God Bless you all for taking on such a role and I encourage any responses that might help me and my family to continue caring for my Mom in our home.

 

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TilZ answered...

Dear One of Mort. The condition of your spouse is very similar to my wife's. My wife also was having seizures. Her doctor gave her a prescription for a drug called Levetiracetam. She immediately stopped having the seizures. Our greatest joy being a caregiver is getting them to laugh and smile. Keep up the good work. You are a special person.

 

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MargieB answered...

My mother was diagnosed with Mild Cognitive Impairment (MCI) 2 1/2 years ago. I can tell she's failing more every month (week?) but so far she's doing pretty good; still able to live on her own in assisted living facility.
My question is: What drugs are your loved ones on? Mom is on Excelon 3mg a.m. and 4.5 p.m. Dr. wants her at 4.5 and 6 but she suffers severe nausea with this drug so haven't taken her up yet. Also she's on Namenda. Both of these drugs are QUITE expensive and my main concern is that she'll run out of money and have to go to a nursing home for care. Currently she is in the facility just 3 blocks from my house so I'm there several times a week. I'm afraid that once she goes into a nursing home she won't live long. What has been your experience with Dementia/Alzheimer drugs? Are they money well spent or just "sugar" pills - not really doing anything. And how long after going into a nursing home did your loved one live?

 

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dear one of Mort answered...

Dear Bless You, I think you are doing a wonderful job and I think that your consultation with a psychiatrist was a good idea. My husband takes 50 miligrams of Trazadone and I think it really helps him. He also takes a tiny dose of Zyprexa 1'25 miligrams. Some Alzheimer's patients have trouble with Seroquel but if your mother tolerates it, it's a good agent. People can vary quite a bit in their reaction to drugs, that's why seeing a specialist can be so helpful. And to TilZ, thanks for the suggestion regarding seizures. I looked this up on the internet and found that seizures occur in only a small number of cases. My husband is scheduled for an EEG in a couple of weeks. Since his seizures have been so mild, I have mixed feelings about starting him on a new drug since drugs also can interact with each other and he seems to be at such a good place regarding temperament.

 

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dear one of Mort answered...

To Margie, My husband was first diagnosed with MCI when he was 73. I was so angry. I knew it was early Alzheimer's. But then I saw things no one else saw. I saw him repair a fan and leave wire exposed and he said it was OK. I'm an electrician's daughter and knew it wasn't OK. And there were many other little things. At work, no one noticed he was different and he taught until 2006 and his diagnosis of MCI was earlier that year. The following year he showed social symptoms that required him to stay home. Now he 77 and he takes Aricept, Namenda, Trazadone, Zyprexa and Effexor. Some are now in generic form and are cheaper. As I previously commented, everyone tolerates medications differently (not differently enough to not be able to provide general directions but a physician should be monitoring therapy). Since your mother is already in assisted living, it is likely that they will tell you when she needs to be moved into their "memory unit".

 

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Bless you answered...

Dear one of Mort - Thank you so much for the encouraging words regarding my Mom's medication. It helps me to be able to interact with others such as yourself that can give constructive input as you know exactly first hand what my family is going through.

My Mom will be going to see her doctor in two weeks to evaluate her status. Should there be any updates that can be beneficial, I will post them on this site.

May God bless you all.

 

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MargieB answered...

Thank you dear one of Mort for your comments. I catch myself being short with my mom when I ask her to draw a clock with numbers (her most difficult feat). She can draw the clock but puts the minutes 5, 10, 15, etc. on the face vs. the hours.... I explain and explain and get frustrated and then my tears flow because I know she can't help it and yet I WANT MY MOM BACK. That's the one test she fails every time at the neurologist's office so I think (I guess) that if she can do that, then she'll be back to her old self. I'm not a child; I should be able to get this through my mind but she was so very vibrant and active all her life, i.e., pouring her own concrete steps on her porch, canning, mowing, watching 3 small bitty great grandkids all day frequently... driving, singing, exercising... I JUST MISS MY MOM!!! She can still carry on a good conversation, walk, eat, dress, all the main things 85% of the time but then there are days when she can't remember anything. I should thank God for what she can do and not get upset of what she can't do, I know. It's a blessing to have as much of her as I do now. I know you all have experienced this too so it helps to know that others get angry. I've been so ashamed of myself (60 years old, I should know better) but God only gives us one mom and it's so difficult to lose her this way. Day by day, watching her spirit fade.
Thanks for letting me vent.

 

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Bless you answered...

Dear MargieB do not beat yourself up for feeling the way you do. It is a normal emotion and you are not alone. There are days when I feel helpless and cannot control the uncontrollable. But there are moments when for just a little while things seem "normal". As long as you can tell yourself you are doing the best you can 'YOU ARE DOING THE BEST YOU CAN'. Please understand you are not alone in this journey as you have a huge support group attached to this website and if we can share our experiences perhaps it will make it just a bit easier to get through each day.

MargieB you have people here that care and understand all too well and remember you are a good person with a good heart taking care of a loved one who once took care of you.

God Bless You.

 

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dear one of Mort answered...

I lose my cool sometimes too and I guess all of us beat ourselves up over it because we do know that our loved ones can't help the way they are doing things and it certainly isn't to spite us. But this is an emotional thing and all of us (I guess) feel angry that this very special person is leaving us. In my case, it's my husband. We've been married for 54 years and in our later years drew considerable support from each other. Now that support is gone and with it is the realization that he will be gone as well.

 

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Bless you answered...

Dear one of Mort - We have the support of each other through this long journey. I cannot begin to tell you how much you (all of you) have helped me just by sharing your stories. Before I knew about this website it was awful for my Dad, sister and I. It felt as though we were all alone in this and outside of friends or friends of friends who knew someone with Altzheimer's we felt extremely alone. Now I feel a bit better knowing that I (we) have a wonderful support system who can understand, share and encourage us as we face new challenges it seems on a daily basis.

You know my Mom used to knit sweaters with intricate designs for my sister and I along with gifting some of these items to churches for the annual bazaar. She was a great cook and baker and was always asked to bake something for luncheons and/or club events. All of this is non-existant as she cannot remember how to knit or bake. Frankly, she has lost interest in all activities no matter how much I encourage her. We play simple card games but she looses interest and I cannot encourage her to keep going. A new development lately is that she thinks programs on TV are actually LIVE and happening in our living room. To her it is unsettling so thank heavens we have found a retro show on TV with shows such as Maude, All in the Family, Sanford and Son, 3 Stooges, etc which she enjoys.

Once again THANK YOU FOR ALL YOUR CONTINUED SUPPORT.

 

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dear one of Mort answered...

My husband thought the TV show was in the living room too and would become very frightened. He would get off the soft and crawl across the living room to the front hall. There he would stand up. It took quite a while before I convinced him that these scary things were not here and this wasn't an actual thing happening anywhere near him. Also, I stopped tuning in things that I thought might scare him. Gradually he let go of that idea and it doesn't matter what's on TV. Sometimes, if he appears to be scared I will turn off the sound, offer him his favorite stuffed animal (a very long dachshund we call Lola) and suggest he try to sleep for a while. I don't miss the sound since I rely on closed captioning.

 

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mom7237 answered...

Hello, My first comments are with the stages of Az. Upon my readings and attending support groups, they have told me there are 3 stages, mild, medium and severe. Within those stages there are overlapping symptoms to varying degrees.

Upon reading comments, the families that have the support of friends, family are truly blessed. My mother had been diagnosed in 2008, after a fall which broke her hip, while dancing at her senior center. Surgery, rehab and a brief stay at assisted livering, while recovering, she fell again, and fractured her other hip. Once again, surgery and in rehab. She hated assisted living and became one angry old lady. So the family moved her back home.

Although, before mom became sick, she had DPOA's, patient advocate and her will made out, to make a long story short, it has become a nightmare. Both myself and brother have the same dual DPOAs. He may be living with mom free and clear, but has arranged for care giving. He has made a mess of her finances. He just doesn't get it and now will not allow family to visit. Consulting with legal advisors have told me to go to court for conservator/ guardian.

Will this solve the matter? My brother has made this all about him
He hides behind mom, feels he is entitled. Once mom passes away, I will deal with him on my own terms, as I am excutrix of mom's estate.

I have my memories when mom was of sound mind.

 

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MBO answered...

I have to say this website is a great resource. It seems as though when I feel like I've had enough or can't do it anymore, I get an email from this site and after reading others' posts, I know I am not alone and my feelings are shared by others. I have been taking care of my Mom for the last 4 years. She is currently in the last stage of the disease and requires help with bathing, eating, and getting dressed. She is happy most of the time and loves to dance. I feel guilty when people say that I am a saint for taking care of her. There are times when I loose my patience, I am far from a saint. But I do love my Mom and plan to take care of her to the end. I miss her and this disease is aweful. Thanks to everyone for their posts. They really do help. Love to all....

 

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An anonymous caregiver answered...

My husband and I have cared for my Mom(91 yrs) and Dad(96 yrs.) for the last 3 years. BOTH my parents have Alzheimer's. I retired a year early to help care for Mom as she rapidly progressed through this disease.She is in the final stages. All the signs are present including having her legs in a fetal position. Dad progressed at a slower pace the first 2 1/2 years; but, the symptoms have escalated in the past few weeks.It is surprising how quickly this disease spirals downward! Although I had fantastic morning help from a private duty nurse and fabulous evening help from a LPN, I was forced to place them in an assisted living community specializing with Alzheimer's patients for their own safety. They are now monitored 24 hrs. a day. This is something I could not accomplish. Another reason was that the substitute home health aids I hired through an agency were not dependable.As it was, my husband and I had responsibility for 15 hours even with the help. When aids did not come, our hours were extended and we were exhausted! Now, they get such loving care from many LPN/CNA/RN(s). Dad's midnight wanderings were getting scary as he would climb steps without his cane or hallway lights. He would break glass objects as he redecorated for me. Now, he is safe. Mom would slide from the sofa and wheelchair. Now, she has several people who are able to safely lift her. I could no longer lift her because of recently developed back pain and a hernia. My husband was often on pharmacy/food runs and would be unavailable in the afternoons.We set a baby monitor and an alarm on their bedroom door, but my husband and I began sleeping through them! Looking for a community that would take my parents and keep them together(they are married 70 years)...and, still be affordable, was a challenge(on the limited time and money I had available). This community takes private pay (my parents saved to give their children a small inheritance)and will continue their care in their same rooms when Medicare takes over. Nevertheless, the excellent care they are now receiving in these final stages is a God-send and well with any forfeited inheritance. Also, we are welcomed to visit them all day, every day...we visit them every day. Thank you for your consistently great information.Thank you for the support of this community.

 

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An anonymous caregiver answered...

My father is going through the final stages of Alzheimers. He is now physically abusive to me (he hits me, swings at me), and verbally abusive to my sister. It seems like he can only swear at us, and say "no" to everything. We have been going through this for 6 years, and although Dad is physically pretty healthy, he is no longer my Dad. I think this is the hardest, as I sometimes do not want to go visit him in the nursing home, knowing what I will have to deal with. But I go, and some days come home and cry myself to sleep. this is an extremely unfair disease, and I pray for a peaceful end to my Dad's long life. He will turn 92 in one week, and had a terrific life until the onset of Alzheimers.

 

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vsiegrist answered...

My Mom is in the last stages....she is bedfast now and hardly ever eats anything. She is in her own home. Dad and I are taking care of her. I have two brothers and they are awesome and very supposrtive, as are their wives. It really helps to have the love and support of family and friends. If you know a family in a similiar situation....be there for them....visiting is a big help. You are never in the way.

 

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kathryn pears answered...

I see that many people posting are experiencing a number of behaviors that are upsetting to them. As an educator for the Alzheimer's Association in Maine I run into many caregivers facing the same challenges. The most important thing to remember is that regardless of the stage of the disease behavior is a form of communication. As caregiver, it is up to you to try to figure out what the person is trying to communicate. Because of the disease process in the brain individuals with dementia are unable to verbalize exactly what is bothering them. Caregivers need to think like a detective to try to sort out what they are trying to communicate and then try to accommodate or relieve the source of their distress. First and foremost, is the person in physical pain? Urinary tract infections are one of the most frequent causes of agitated behavior. If you have ever had a urinary tract infection yourself you can understand how painful it can be. Now imagine not being able to tell anyone of your distress. For the person with dementia, they only way they have to communicate this is through their behavior. I always advise caregivers to investigate first and foremost if a urinary tract infection, which is very common in the elderly due to an adequate fluid intact or less than ideal personal hygiene could be the cause of their agitation. Other sources of physical pain could be untreated or under-treated pain from arthritis, migraines, old injuries, etc. A new medical condition could also be the cause as could side-effects from a medication they are on. If physical pain does not seem to be the cause could it be how you as a caregiver are interacting with the person? Are you feeling rushed or stressed as you attempt to provide personal care, especially bathing? People with dementia are extremely sensitive to body language even if they cannot make sense of the spoken word. Are you asking them to do things that are beyond their abilities? Not eating may be due to developing swallowing difficulties. A consultation from a speech therapist could help determine if this is the cause and can provide you with tips and techniques to make mealtime easier. In some cases the person may need more assistance at mealtimes. They may forget how to properly use a fork or spoon and need to be cued by the caregiver. Feed smaller portions on the plate - large amounts of food may be overwhelming to a person with dementia. Serve food on a brightly colored plate to increase the contrast to compensate for changes in a person's visual-spatial abilities. People with dementia often stop eating, not because they are not hungry but because the task is too difficult for them to perform. Try responding to the emotion the person is expressing...the person with dementia lives in a persistent state of confusion. Reassure them that you are there to take care of them, offer a comforting hug, a hand massage with some pleasantly scented lotion, play some familiar music, etc. Fear, loneliness and the loss of physical closeness can often account for tearfulness, repetitive vocalizations and agitation. Finally, make sure the environment considers the changing abilities of the person with dementia. Reduce clutter, minimize background noise (for example, a television playing in the background can often be very confusing for someone who is unable to discern what is real and what is not). Boredom can also be a culprit. For someone in the later stages a "rummage box" of small clips of fabric of different textures can be soothing. The Alzheimer's Store (www.alzstore.com)carries a variety of articles that can stimulate a person in the later stages. If bathing is a problem try a bed bath using no-rinse soap and a shampoo cap (available from your local medical supply company or the Alzheimer's Store) instead of soap and water. Keep the person warm and covered and clean one part of the body at a time. By thinking about bathing as an opportunity for comfort - think spa day - as opposed to a task you can often not only eliminate frustrating and combative behaviors but provide a welcome and pleasant interlude. There are many more reasons for behaviors than there is room to cover them here but the key notion is to remember that behavior is an attempt to communicate some unmet need. As a caregiver, you must try to figure out what your person is trying to tell you. It could be as simple as being too hot or too cold - even though the room temperature feels perfectly comfortable to you a person with dementia's perception of temperature changes due to the disease process in the brain. Finally, try to avoid the temptation of focusing on the person as they used to be. The person you knew is still in there and will respond to your love and kindness. One of the last things a person with dementia loses is their ability to feel emotion. By trying to uncover the source of their distress you can often turn their distressed behavior into a place of comfort and contentment. Far from being a mystery, a bit of detective work can help you find a way to soothe and comfort the person you are caring for at any stage of the disease. I hope these tips help.

 

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lauriea answered...

My mother recently left this world and was just "officially" diagnosed with Alzheimer's only a year and half ago. We have been on a very fast roller coaster throughout this past year and half. From part time care givers to a board and care with all the typical behaviors happening everyday. It seemed that she progressed very quickly and still recognized me through all of it. Her death was caused by renal failure as it was written on her death certificate with the Alzheimer's also noted. I read other postings and know exactly what they are writing about. I think us caregivers can just look at each other and give the knowing nod. A few of my friend's are in the place right now of caring and protecting their parent who has the disease, told me the initial reaction to the news of my mother's passing was envy, jealously. Oh, how I understood those feelings they told me about. Her passing is bittersweet. I had been mourning the loss of my mother for many months before she passed. I also read and see others currently taking care of their loved one and learn it has been for many ,many years and realize that I was a "lucky" caregiver. I did not have to so this for that long or as long as I see others caring for those with Alzheimer's. My prayers and hugs to ALL of you out there. I am finally at a place to give back. I am heading to the office of the Alzheimer's Association near me and will volunteer. I still will go to lectures and read all I can to learn and be here to help anyone I can. My support to any of you is I am here and I know!

 

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Mychael answered...

This is my second time around, I took care of my adopted father for about 4 years, he passed away last year and 3 months later I began to take care of his younger brother, currently like before I left my home and I have moved in with my uncle(his wife lives in a local nursing home in the last stages of alzheimers). I have seen several things happen to my dad,aunt and uncle,respectful of the fact that everyone is an individual.This is a terrible illness. I have not read one comment here that isn't accurate and helpful.

 

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Home Caregiver answered...

Thank you Kathryn Pears, You have outlined the basic concept behind the agitation and aggression that often accompanies the earlier stages of the disease. I wish I had this info early on. It took me along time to work it out on my own and I hope it will reassure some caregivers that are ready to give up and place their loved one in a nursing home. During those earlier days I think that in addition to the many things you mentioned I think that i my mother"s case at least, that some of the combative,aggressive behavior had to be cause by the anxiety and anger that something very wrong is happening to her. I can only speculate that as an intelligent,creative,alpha type women is taken over by this disease it must be confusing and frightening. Thus the lashing out. I am very much like my mother was and it frightens me when I think that this terrible disease may attack me some day. Mom has been living with me for 11 years and she was diagnosed 9 years ago and is in the early severe stage. She is slipping more but still has a quality of life when we sing and listen to music. I want to tell those people dealing with the abusive stage to take your advice and also try to keep a sense of humor. When my mother would do something like throw the gas grates from the stove at me I would try to distract her by telling her I was getting to old to duck in time. Basically once this behavior started I would try with all my might not to start yelling,although not always successful with that, I found that by trying to redirect or even leaving the room helped us both cope. All that type of behavior is in the past now. For the last couple of years she has been very sweet and loving more so than ever she outwardly expressed when I was growing up. She is in many ways the child now and somewhat like a puppy. She wants to see me all the time. I might be in another room and she will call me and ask if she can be with me. This stage has it's own hardships with regard to caregiving-the total incontinence being one of them, but still and even more acute is the feeling of loss of my mother. She is 89 and her mother lived until 98 with her mind as sharp as a tack but with severe arthritis so I don"t know what to expect about the future in terms of how long my mother will live. I do know that as the 24/7 caregiver it is getting harder and harder but I am convinced that her life is better and she is living longer because she is with me. I do have her go 2-3 times a week to adult day health care. I would recommend that to all caregivers. Those few hours,even if expensive are worth it . Like some other caregivers, I have absolutely no help from my brother, who is married to a nurse! In 11 years they haven"t taken her for even a day and they only live 2 hours away. I know the pain,anger and disappointment in that but again, like with this disease I have no control over that. Asking/pleading fighting does no good and only upsets and saddens me more when I periodically put myself through that. I still can not come to terms with my bothers lack of responsibility for his mother who loves him so much and sacrifice so much for the both of us. If you or any one else have any thoughts or suggestions to help me through this last particular problem I would welcome them.

 

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Kathleen.j. answered...

It breaks my heart to read your stories. At the same time it helps prepare me to lies ahead in caring for my husbands. He still reads, and I share funny e-mails with him. We watch old sit-coms together and laugh a lot. If I get cranky, he does too. If I keep things light, he often will respond in a positive way. All of you share your heart and I thank you for being honest and open. When I was in my early 30's, my parents moved from California to live in our home in the midwest. He'd had several strokes. He started out at 200 pounds, and two years later he died - weighing under 100 pounds. I know that's not the same as Alzheimers, but the same feelings of uselessness. I asked my oldest son if he remembered Grandfather. He was 3 when Daddy died. His answer: "He had big, kind eyes. He died and went to heaven and Grandmother got on a plane and went to California." Remembering the good things in my own marriage and how we worked together to raise 9 kids, helps me get through my husbands difficulties. Thanks again, all of you, for sharing your hearts.

 

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shoodoobee answered...

My mom, who is now 82, was diagnosed a little over a year ago. At the time, she lived in her own manufactured home in a retirement community in Florida. Her friends and neighbors started calling me in a panic (I'm in Colorado)that mom didn't seem right. It took a few plane trips down to Florida to get her settled in assisted living and to sell her house & car, but I did it - all by myself. I am 50 and have no brothers/sisters/husband/kids/dad/etc. When her doctor insisted I relocate her to Colorado to be near me, I knew there was no way she could live with me. I'm working full-time, can't retire or quit, and live in a 1-BD apartment with 3 flights of stairs, so I visited no less than 18 assisted living facilities in the Denver area, finally chose one 3 miles away that will take Medicaid when she needs it in 2 years.

1 year has passed and her dementia has progressed quickly although she needs no wheelchair or walker, still dresses herself, feeds herself, and sink-bathes herself. She is high functioning, but the hallucinations have started lately. She sees dogs and cats in her room (she does not like animals!). She calls me daily to come pick her up and take her home. Sometimes it just drives me insane this has happened. We were always close, I am her only child, and dad died 20 years ago. So it's just her & I. Her facility is great but I fear eventually they can't help her and will tell me to remove her. She will run out of money this time next year, unfortunately.

Part of me hopes she does not outlive her money. I always thought someone who said that was being cruel. Now I totally get it. And when she gets confused and upset and swears (something she NEVER did), I feel so bad asking God to make this go away for her sake and mine and I just beg Him to take her Home. This is the part I struggle with most, those "thoughts", because I am truly all alone in this. There are no family members to support me, to visit her, and I have no one in my own life who can just support me as I watch mom fade away. This disease stinks...:(

 

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Trezza answered...

I have been taking care of my Mother-in-law since I married my husband 8 years ago. He has his own business so there are times he is not able to care for her. So I stepped in and took over. I have seen my mother-in-law go through the stages throughout my time knowing her. When I married my husband we decided she should live with us since her memory was declining. We moved a few times in those eight years and that did more damage to her memory than anything I have seen. When her routines where broken, she was never able to get them back. She went from driving, cooking on her own and bathing on her own to what I believe is now the final stage. She no longer recognizes us, she barely can walk by herself, she mostly shuffles, she barely speaks and when she does she is unable to make sentences that make any sense, she can not bath herself, she needs help getting on the toilet and with wiping, she no longer can dress herself and she has some difficulty swallowing liquids although she still eats and can use utensils on her own. That is our only saving grace. There are times I think that maybe I need my head examined for ever getting married knowing that this is what I would be getting myself into. Then I realize how much I love my husband and how much I have grown to love my mother in law even through this horrible disease. When I see her smile or hold my hand tight I know it has all been worth it.

 

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TilZ answered...

Trezza My wife's condition is almost a duplicate of your mother in law's. The last part of your statement nailed it perfectly for me. Even though my wife cannot respond with a thank you or show affection, all you really need is that simple smile and it just lights up one's heart Take care

TilZ

 

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NancyM answered...

My mom is a puzzle to me. She usually does not know my name any more but still knows I am "special". She doesn't know any family member names at all. She cannot put a sentence together--I think because she doesn't have the words any more or simply can't hold the thought long enough. She tries to express herself and I am getting better at guessing. She obsessively reads any words she sees--on TV, on signs--anything at all. She hasn't read a book for at least 5 years. She is incontinent, stumbles occasionally going up and down curbs or steps and walks differently. She eats everything put in front of her and has gained about 40 pounds since moving into assisted living in April 2010 (at the doctor's recommendation). Mom was a very, very bright woman, so I think her intelligence helps her to cover just how far along she is in this disease. She is happy and content.

But I know she is in a late stage because of the incontinence, language problems, not recognizing us, etc. She is ready to die, and I wish for her sake that she could go quickly (she is 86). I hate to think about what lies ahead for her. It is so helpful to type this and know that others understand what I am feeling.

 

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Marisabel answered...

Katryn Pears: Thanks so much for this post. I must say that I have been doing what you recommend this last year and it has made our lives much better. Urinary infections are common and causes a lot of agitation. My mother cannot tell that she is in pain or has a fever. So we watch for that if she is not calm and happy. My mother is 90 and shows all the simptoms listed above minus that she eats very good. I don't expect my mother to die soon. So we are trying very hard to make her life comfortable. We talk to her about that we are here to care for her, that we won't abandom her, that she has no money problems any more, that all the family is healthy and happy and that we are all coming to be together for Christmas as she wants. (Something she asks for all the time and since she forgets we repeat everytime needed) When she hears this she smiles and the worries in her face dissapears. Sometimes my mother comes back and we can share simple pleasures. I try that this moments happens often. She doesn't know very well who I am but she knows I love her. I know very well who she is.

 

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RKayJohnson answered...

I have taken care of both my mom and dad over the past 10 years both having Alzheimer's. I really didn't get any help either with care nor answers with medications from their doctor. They would both get sundowners and was so very hard on both of them and my family. The anxiety medicine they were on helped but that is all their doctor would prescribe. I would add some herbal mood enhancers and benadryl(sp), with them both having allergies, at night time to help with rest, agitation and mood swings. My mother passed, God willing, with a heart attack. They had both began to be slightly incontinent, bathing and cooking came only from me and evenings were getting more INTENSE . I knew it was just a matter of time that I would have to seek more help. My father grew even more aggressive after her death and I had to get help with a private facility. Long story short, we had some bad experiences with private facilities, but finally got help with Hospice when a good friend told me how they could help my father. They are so amazing. I so wished I had the help with my mom too. I don't know why I could not get their doctor or the doctor at private facility to know how to handle or manage without drugging them or virtually doing nothing. No facility would keep them or him with their aggression, confusion, and wandering. The medications changed everything so that I could at least take care of him in my home again. He is totally dependent for care and needs help with everything but he is not hitting you up side the head etc. My father is now on 75mg Seroquel Morning and Night. 1 mg of Lorazapram at noon and 4. At night with the 75 mg of Seroquel, 25 mg of Trazodone. I am sure you could give or take with Seroquel and more Trazodone. 50 /50. They prescribed 50 in the Trazodone but 25 works for him. I do have Lorazapram drops as needed when he is extra agitated or nervous but I rarely have to use it. For example, if I take him with me to new place with a lot of people, people come over for holidays, etc.. He lays down and sleeps 10 hours at night. Take a catnap in morning and sometimes in the afternoon. Sometimes both, sometimes one, sometimes none. My caregiver, while I am at work, takes him to ride in her car, shop or sit outside and I do the same. I just switch up sceneries and chairs etc. She taught me to not be afraid to pack up everything, diaper bag and all, and wheel him around. Not all the time because it does where him out but I think it makes him feel like he is a person and is worth it. I give him an extra-large slinky that he loves. I gave him wand today that makes different sounds. Envelopes or packages to work on etc. Texture, and kinetic manipulation seems to work. Somedays he scowls all day and never responds and then others he smiles and says little hints of himself. He frowns more at me for some reason. I always talk to him sweetly, calmly, and patiently, and definitely redirection or walking away a bit helped on the grumpy days. The meds of helped so much to give management for me to enjoy what I have left. I wished I had more help with my mother. I have cried at times until my heart broke into pieces. I teach teenagers all day, have three daughters and a wonderful supportive husband. I truly wouldn't trade, now, what we have gone through. It has made us stronger, more compassionate, patient, and an ADVOCATE FOR THE ELDERLY WHO DO NOT HAVE A VOICE WHEN THESE PEOPLE GLADLY TAKE THOUSANDS OF DOLLARS BUT GET IRRITATED AT THEM FOR BEING OLD OR OBSTINATE. My heart and prayers go out to everyone who are experiencing such heartbreaking moments but yet such sweet tender moments you will cherish forever. I strongly encourage you to push for comfort medications so that you can enjoy your loved one to the fullest and make them feel secure and safe while you love them to the very end. God Bless. p.s. Sometimes when I lay my head on my father's chest and hold his hand until he falls asleep I feel my mother's presence so much I can almost smell and feel her loving touch...the mom she was before the disease took her mind.

 

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Crystal.B answered...

I am the sole caregiver for my 77 year old Grandfather who has end stage Alzheimer's. This disease is devastating. He requires care 24/7 and it gets physically and emotionally draining but I have no regrets. Many are surprised that I gave up my entire life to care for him. Yes, I may be 29 but he's been there all my life and I wouldn't dare let him go through this alone. He is unable to walk or feed himself and needs assistance with all daily activities including toileting and bathing. He has not really become combative but did grab his home aid when she was giving him a bath but I don't really think he intended to hurt her but was confused. I was able to calm him down and get him dressed. There are days that I do nothing but cry because this is no way for him to live. He has always been so independent and I can only imagine how it makes him feel to have to depend on others for everything. Earlier this week he refused to eat or drink and stopped talking. According to his hospice nurse that is him transitioning to end of life. For the past 2 days he has just been in a catatonic state, unresponsive with just this blank stare. And even though I have literally watched him waste away the past 6 months that I have been caring for him this is the hardest to deal with. The not knowing when he will take his last breath, him not being able to tell me if he's in pain. I feel helpless because he has a DNR order so there's nothing that I can do but let him know that I'm here. I commend all children, grandchildren and family members who care for those with Alzheimer's, no matter what stage it may be because it is NOT an easy job and should never be taken lightly. I've had many downplay it as simply "babysitting" and caring for anyone with Alzheimer's is far from that. It is a full time job and not everyone is built to handle everything that comes with it. God Bless all of you who are doing it or have tried.

 

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EFT4Me answered...

I stopped in today to bless all of you guys & gals who are doing the best you can with what you've got. What we got was elderly parents with a horrible disease. I really believed once my parents where gone it would be so much easier! My Dad passed away 2.5 yrs ago, my Mom 6 months before him. They spent the last 5+ yrs of their lives living downstairs. We had the baby monitor & people that came in to help during the day. I had 3 siblings that each came twice a week for a few hours. Sev yrs after they got sick I have an alcoholic brother who had been disinherited years prior, move into the attic. My parents believed he came home to help with them. Truth was he was evicted & was again homeless. Even the alternating nights when it was his turn with the monitor I couldn't depend on him b/c of the 7 day a week drinking. To say it was the worst experience of my life would be about right.

When you add in the other siblings hating me & doing everything they could thing of to hurt me, it was nerve wracking. No matter how many times I reminded them to turn off the intercom before they started bashing me to my parents they always seemed to forget. My Dad was 7 yrs on Alzheimer's meds, slept 20 hrs a day, didn't know the diff between day & night.Couldn't read the newspaper for over a year. Barely recognized anyone, incontinent had depression. I also took care of his diabetes care, foods, insulin etc. None of them wanted my folks in a nursing home because that would have meant selling off property & screwing up their inheritance's. I was due to inherit the 2 family we lived in because I had paid my parents rent for 25 years. We had an agreement about my 'investment'. During the last 5 yrs of his life my Dad had to put up with my Sister bothering him weekly, she wanted him to change his will. In fact she told Dad's Social worker a year prior, that he wasn't to sign ANY paperwork because both him & my mother would be considered incompetent. She' s a nurse & knows all about that stuff. Long story short, 3 months prior to his death I mentioned to her that he couldn't remember what anyone was getting in the will & that he didn't care either. I figured at least she'd stop hounding him. Nope, instead her & my older brother diapered up Dad & took him for a ride to the lawyers. They had him sign a new will they dreamed up. So now I inherited half a house & a new 'partner' my brother the drunkard! All the reasons my Dad had taken him out of the will, have come true. Dad knew he owed his ex-wive's almost hundred grand in back child support, knew he didn't pay bills either. Meanwhile the new will gave a different brother the entire business & 3 properties. My brother hasn't paid his half of the expenses, no utilities or taxes. I didn't just lose the income apartment, I gained a 100K mortgage hanging over my home that I never borrowed! Hos ex-wives both have liens against my home. Talk about depression...jeez. My folks always believed that my Sister & older brother where so wonderful, even when I had a feeling they where no good, my Dad insisted they would never screw you! Several yrs befor all this He even dragged the older brother out on X-mas Eve & reminded him "Your Sister thinks your not going to follow my wishes after I'm gone, I told her she could trust you" ..."Oh Dad I would never screw family, you raised me better than that" said the lying schemer. Lesson learned, if anyone ever tells you " Well at least you can trust your family"...Yeah...right.

 

KimmyL answered...

I feel the pain and frustration of each of you! I'm having a difficult time "fitting in" anywhere...... my husband, 64, was diagnosed 3 years ago. But, knowing more now, I feel he has had the disease closer to 4 to 5 years. I am only 52, and work full-time. It is difficult to find someone who understands and can converse so I don't come away feeling like the victim. My husband's medications are Seroquel, Aricept and Depakote. He has been able to stay at home alone, but I don't know how much longer. I'm frustrated because I know there is help out there, just don't know where to begin looking! I have been blessed with patience though, and a positive spirit. Reading all of your responses also gives me inspiration! Thank you.

 

Daddy's girl from NC answered...

I took care of my father in my home for three years. He NEVER slept at night, so in March, we moved him to an assisted living. He was discharged from there a month later to the VA hospital for these " slumping" episodes. He would slump to the floor, get up, slump again, on and on. Since April, he has lost 25 lbs, has become incontinent of urine and feces, has lost his speech, usually does not recognize me, never recognized S my sister, asnd is in a facility that takes combative patients.. Can anyone let me know how long this horror went on after they lost the above things I described? I just want this to be over for him. What a horrendous disease that takes the memories away of your children.

 

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An anonymous caregiver answered...

I am from Michigan. My prayers and support go out to all of you who care for their loved one. I had commented before that my mom also had dementia. I commented that the brother and I were both DPOA. He was nasty to me, badgered, and bullied me. Would not allow me to visit mom. Mom passed away in June. I only learned of her passing from a mutual family friend almost 2 days later. My siblings did not call me. My brother is/ has lived under mom's roof free/ clear. He learned I was appointed mom's Personal Rep. The Court approved my papers and now I have the responsibility to clear / close out mom's Estate. You would think mom had millions of dollars!. Of course, he has tried to contest the Will. I am under legal advisement with this situation. I have so many anger issues.. Blessings to all of you

 

Cleocatra3 answered...

My 80 year old Dad and I take care of Mom (74) at home. She was violent for a while but a medication called Geodon has helped with that quite a bit. She can not walk without help, has to be fed, messes herself almost all the time and has no idea who we are. For those dealing with this, I know how you feel and what it is taking out of you. Mom sleeps in fits and bits so I have a motion detector beside her bed at night so I will be alerted every time she tries to get up. I try to stay beside her as she has fallen a number of times. BUT, the worst thing is the paranoia.........Prayers and Blessing to those enduring and those caring....to top it all off-I am getting a divorce and cannot run to my mom for solace...life is great if you don't weaken

 

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Sarahbelle answered...

I'm 19 years old. My mom is in her 50's and is in her end stage of Alzheimer's. my mom has no husband, only 5 girl children and I'm the youngest. I give my mom a bath while my friends get mad they have to wash their own dishes. I should be studying for my quiz tomorrow but I just received an update on my mom and personally i just want to lay in my bed and cry and sleep. With a terminal brain disease, updates are always bad. It is so frustrating that I am a college student, have a job, 3.5 GPa, have a dying mother, and moved in with my aunt because I couldn't live from house to house any more, and I can't even get scholarship money. So many kids on scholarships only ever party and barely pass classes and I'm studying my butt off so I can graduate so that we can wait 5 years to get full Medicare coverage. Realistically she isn't going to be alive for 5 more years. But knowing that you all out there get frustrated too does help. I lived with my grandparents when my grandpa died of Alzheimer's .i don't want to go through this again. And I feel awful that I'm in college and still dependent and so she can't get the care she deserves because of me. I could rant for hours. But instead, I'm going to leave you with a funny story. The other week my aunt was caring for my mom(we rotate caregivers). My aunts dog pooped in the bedroom and my Alzheimer's mom unknowingly stepped in it and proceeded to track it through the bed room. My aunt realized and after many explanations and huge messes got my mom to clean her foot in the tub. As my aunt got ready for bed she brushed her hair and got my mom ready too. A minute later my aunt noticed her hair was stiff.... My mom had wiped the dog poop off her foot with my aunts hairbrush and set it back on the counter... Whoops! I would say my aunt had a crappy day! Humor from the life of dementia.

 

paleea answered...

My mother was just diagnosed roughly a year and a half ago while in the hospital with a stroke although we suspected something was wrong way before that.. We went back and forth with letting her come home and letting her manage on her own (at her insistance), having another accident, being hospitalized, letting her go back home with a nurse coming in, back in the hospital again after another incident and then finally into Assisted Living. Each incident had taken a little bit more of her memory and being the only child of my widowed mother, single, working full-time and with no relatives living nearby to help share in the responsibility has been difficult.. It has been an emotional roller coaster for both mom and me and has been a real trial by fire with learning how to deal with the disease, what to expect and learning to take care of not only her but myself as well. We both have our good days and our bad days and it hasn't been easy by any means. I've learned to appreciate the time we have together (while she still has most of her memory), knowing that in the near future I will loose "her". I know the worst is coming and I will struggle with the unfairness of life but for now she is still here so I'm thankful for the time that we have now and pray for her for the future. That's all any of us can do.

 

LeslieC73 answered...

My love and prayers go to everyone battling this monster. My father was diagnosed about 7 years ago. My mother has been able to manage him at home and until recently thing have been rough, but manageable. In the last week things have downward spiraled. Suddenly he goes to the bathroom and will not get off the toilet. My father is still very able bodied and able to get around with no assistance, so I don't think it's a physical issue. He went to the bathroom at 1:00 on Friday afternoon. I went over at 5:30 after work and mom told me how long he had been in there. I tried to talk him out, and finally just went in and offered him a hand to help him up. He told me to "get the hell out of here" and slapped me several times. Finally my brother in law came over and went in, and dad allowed him to help him up. This was at 8:30. A grand total of 7.5 hours sitting on the toilet. Thus far, this has been the greatest challenge. Just wondering if anyone else has had these problems and looking for any thoughts or suggestions. I've told myself for so long that it could be so much worse. At least he doesn't seem to be in any physical pain, Alzheimer's hurts the family more than the patient. Nonetheless , it is a brutal thing to lose a loved one a little more each day.

 

mosie crock answered...

I have been looking after my motherinlaw for 4 years now she as all the signs of late stage apart from she can walk slow I have to do everything for her feed wash dress I av to stand at the side of her to brush her teeth overwise she wouldn't like all of yous im dreading wen its the end my husband is the only child I don't get any help ive ad to pack work in as I was so tired its a 24,7 day god bless all that do a brill job with ther loved ones

 

A-Jude answered...

I live in Australia and came across this site by chance....I am the primary caregiver for my 85 yr old mother who has recently come to live with us. For three years I had been trying to convince her doctor that living on her own was not desirable as she was becoming unstable..Finally she was diagnosed with mild cognitive impairment. Even so this mad little difference to the situation I found myself in as she would not take advantage of domestic home care assistance that our government provides at little cost, nor would she move in with me. And so I had to play the waiting game doing little more than taking her shopping and providing meals that she would forget to eat. Finally after losing much weight, confusion and depression drove her to me and she was assessed again and has been diagnosed with not only Alzheimer's but mantel cell lymphoma as well....She now has a government home care package whilst living in my home. I am so grateful. It provides for personal care if need be, domestic and home maintenance help at a low price and 5 hours a week in-home plus 4 weeks a year in-hostel respite, so that my husband and I can take a break from 24/7 caring. I am so grateful for this chance to take care of mum. However, it's a long way from being over and I don't know exactly what I'm in store for, but sites such as this one are a God send. Thank you

 

Work In Progress answered...

My Mom is @end stage Alzheimer's, my sister and I take care of her; she has lived @my sisters house for about 6 yrs now and for the last couple years as my Mom has worsened, I have spent 2-3 nights a week during the night so my sister can rest. We both work full time jobs and both are married (she recently lost her husband to melanoma.) We have 3 siblings who have not been held accountable to assist us, She is the mother to ALL of us, she has raised us all very we'll, all of us should be able to help her when she needs us most, even if it is just sitting with her to give my sister a break! None of us like seeing her the way she is, but as the saying goes, "it is what it is!" I have found that the worse thing you can do is argue, it upsets them and makes both our blood pressure rise, I look at it with those who want to argue with her as "Who is in their right mind you or our Mom, you know better, she doesn't, what she is saying at the time is REAL in HER mind, you're not going to change her mind, so go with her "story", it is the best for ALL concerned! When she starts getting agitated, we give her Resperidal which will usually calm her down within 30 mins, she has gone thru many stages and many changes, the best thing is to keep a journal and try to notice patterns and get the Drs advice to make medication changes as needed, sometimes the medications have to be changed depending on their side effects and/or reactions, every person is different and has their own medical history/medications that may interact with available options for current situation, so every change is a work in progress...just try to treat the person the way you would want to be treated and try to keep your voice calm ;)

 

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An anonymous caregiver answered...

Some of these story's have really helped me, my nan is in the last stages of this horrific disease and I'm devastated. She has had this condition for about 9 years now and last week she was taken into hospital with food on the lungs. She had oxygen and anti biotics but when they reduce it she crashes again, right now my family and I are living day today on a roller coaster of emotions. In 10 days she has had two spoonfuls of custard and 2 spoons of yoghurt, she is sleeping all the time and unresponsive apart from touch she will hold your hand. I feel like my nan left years ago mentally and now I'm having to watch her slowly linger away. It's heart breaking and my nan was such a proud strong women it really doesn't seem fair.

 

Alfie2010 answered...

My mum was diagnosed in early stages of dementia, I care for her at home, it started out, we noticed she was forgetting to eat, she has had a few continence issues all of which she has been assessed for, and uses pads regularly. Recently she forgets to change pads, or forgets to put one on, she only eats if you put the meal Down in front of her, we leave juice at what we call her snack table right at her side, with a clean glass she still pours that and we leave various snacks on this table that she eats, meals need to be put down and need to remind her to eat . She wants to spend 24 hours a day watching television , has limited conversation with us now, she does not wash unless you assist her, I tried to gently persuade her to accept carers she will not have strangers in the house, so I took early retirement which my husband and I had always planned long holidays are out of the question as we have mum stay with us most of the time it's so difficult and I sometimes feel I get so angry , even on a nice day it's always a fight to get her out we have even got her a wheelchair so we can take her on outings she has no interest and just wants to get home. We have also noticed her eating habits are awful, she eats her dinner with her hands sometimes instead of knife and fork, she always spills her food and trails her sleeves through it so meals out I'm a nervous wreck with her, it's hard and I will look after her it's very difficult I have an older brother and sister, my sister is of no help and has never had a great relationship with mum my brother tries, he can't toilet her etc and she refuses to go out with him, he pops in for a coffee spends 1 hour with her, she has good periods I honestly don't think he realises how bad she is , thanks for your site it's nice to know others are in the same situation and it's nice just to explain how I feel thank you everyone just ranting but life will go on

 

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An anonymous caregiver answered...

My husband and I are full time care takers for his mother. I work full time, from home and my husband is only working part time now to help take care of her. I had NO IDEA it would be like this! She's been with us a year now and what I'm reading from all of you is so true. This disease is a mean, cruel AWFUL disease that turns her into a monster when she goes into "sundowning"..but not every day (thank God). We could really, REALLY use some help but there is no one but us. We finally got a nurse to come in to check on her. When she scratches herself the wounds won't heal...we can't understand her anymore. Her thoughts are so scattered she is trying to communicate but it makes no sense. I have to dress her in the mornings and she's not going to be able to bathe/shower much longer. Don't know what we will do then because I can't do that and still work full time. Everyone says "take care of yourself"...I want to SCREAM when I hear that. HOW???? How do you take care of yourself in a situation like this? It's IMPOSSIBLE!

 

 
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