Caring for Mid Severe Dementia: A Caregiver's Guide

Mom did a very rapid decline to this state, although there were some signs of it earlier. She is now in a long term care facility, but may have to move again when we get to Medicaid, since they have limited beds.

I have ADT security system and have had it before my husband developed dementia. Now he is getting up at 3:00 am trying to go out the front door. I have a safe return bracelet on him, an ID bracelet I also had a great call on him but he took it off and lost it. I keep our doors locked but he can unlock the new one I had installed this summer. The ADT alarm seems to stop him in his tracks and they call me when the alarm goes off. It is not safe out here near the woods for him to wander in the dark. I am concerned that if he keeps doing this ADT will take our alarm away. We never used it much in all these years. This is always in the middle of the night we he wanders. Any thoughts will be appreciated. Sharirose78

Thank you so much. All the information in this article is helpful and answers questions that are on my mind. Thanks again.

My mom is 89 and is in moderatr stage. Its so difficult to watxh. Her mother also had tgis but was worse earlier a. Died at 89. This was awful to read about. Can this be a long road ahead? I hate this for my mom.

I have been so hesitant to share because I haven't been able to say the words but I lost my beloved Chuck on February 22 of this year. Two of our sons live out of state but all were together with him when it happened. He had been from rehab to hospital through the months of December and January. This only aided the progression of this awful disease. He developed a huge bed sore because he could no longer rehab. The only blessing in those months were that his confusion seemed to subside and he slept a lot and appeared to be peaceful, finally. He was in hospice for seven days before he passed. It was so true that much of the grieving began months ago and I realized it only after he passed. We all had a feeling of peace surround and comfort us. He was cremated and we had a beautiful mass and celebration luncheon about a month later. It was warm, caring, crying, laughing experience, filled with such wonderful memories of Chuck. The celebration of his life also gave us time to pay tribute in a positive way rather than a mournful way. Now comes the "missing him" time. I travel to see my sons and their families and wallow in the caring and love in their homes. I cannot say enough about this site and all the benefits it gave me and my family while going through the journey of dementia. I was able to vent at 2 AM if I had to or get tips on how to handle any situation that arose. I will be forever grateful and have already passed on the site to others on this journey. Still in love, Cindy

Thanks for helping with guilty feelings. Grieving is normal emotions and part of the process. Website should be at every nursing facility! So much valuable helpful information.

Thanks for the info on feeding tubes as I refused to have this procedure done to my wife as she eats soft food quite well but did asperate a small quantity into her lungs last month and I thought it was too soon for that procedure and refused.She still eats quite well.When the time comes for the procedure which I think is still down the road but not too soon I will know its time.More information on this procedure and opinions would be appreciated.Thank you- from Bernie

Good Tips. I think it ought to be in local papers.

this was a helpful article Im lerning more and more about this dieease I see up first hand now, Its very sad that such strong person has to become this weak lost person.

Thanks so much for this site. It relieves my stress because you mention all of the things that are happening to my husband and does not make me feel so alone. This disease is so hard to manage. By the end of the day, I am exhausted and edgy. You have reminded me that I can do this and to keep my attitude in check. Thought that I could do anything but facing the fact that I cannot is something that I have to deal with right now as a personal challenge. Starting day care this week and hope that the response is positive for my husband and myself.

This article was FOR ME!!! It was the answer to my thoughts and happenings with my husband, although he is not in secere stage, ...it's knocking at the door.. i'm sad...i'm jurt because his family has almost deserted him. I think he may be an embrassment to them now. I provide 24/7 care for him.

etremely insightful=thank you

This site is wonderful.....its amost like a friend. Everything I read I completely understand. No one knows how I feel except my sis and daughter. His daughters have put their head in the sand!!!!! I should never leave the house or allow him to stay with anyone, if he doesn't want to go, at that particular time.....Yes, I was just told that!

HI i'm looking for a good program that can help me take ccare of myy mother in law is very difficultt for me taking care of her her symptoms and diagnoses are dementia does not remember alots of stuff,talks ramdomly things that her name is Carmen whoo grew up with her, she talkks to her as areal personn and basicaly is her conco her demon that she looks like her that she is no one who tells her what is wrong in the world she talks to her laught with her friend carmen which when she talks there is nobody next to her ................SHe sits in a oldchair that she has almost 14yrs or more talks to her carmen and forgets everything. Me as her daughter in law dedice to take care of about 1yr already i left my own job to help her take care of because nobody of family approach to tae care of her please help me so i can get a salary in which i been working with her long time and never had agood program for her so i can work witth her....

The fact that I can just jump in here and get tips about what I am experiencing right now with my mother is incredibly helpful. Especially the tips on how to react to all the incorrect statements made, and what the laughing it off or blaming others is all about. I have been at it for three and a half years and sometimes I can't think straight. I have tried getting aides and going back to work but that was harder for me to cope with, so I am back at it solo. It is nice to find a site that is easy to use and so accessable. thank you.

I thought I had a lot of problems until I read some of your inputs, and have come to the solution that I am in a lot better shape than a lot of you. I am the sole cargiver for my wife who is 86 years old and in an advanced state of AD and Vascular Dementia. I firmly believe, after much prayer and meditation that the Lord will keep me healthy to take care of her, She does not wander and sleeps about 18 hours a day. I love her very much and want to do all I can for her as I feel she would do the same for me, but when the time comes to the point that she doesn't know who I am then I will consider putting her in an ass't living home or a nursing home. God bless you all!!!!!!

This is the first time I have heard something that helps and supports me as a caregiver also. I told my family and neighbors that I needed a regular couple of hours every week or two, they ask: WHAT FOR?? He seems easy for them, they don't understand. Lately though I see them watching him with new understanding and concern. They think that he is depressed and that I should engage him and take him out more, get him to exercise,.....well yes, I try all the time.

I've shared this sight with my sister who lives 1000 miles away and only sees her every two or three months. I go out 2 or 3 times a week. I know I'm too close to really evaluate so I've asked her to let me know what she thinks from phone conversations. I'd like to know if seeing her so often is better or worse for both of us.

Yes, I am the person that is having the trouble with memory. I now live alone. My Seventeen year old son went to live with his Father. Now he has nothing to do with me, not texting, email, calls, visits. He looks angry when he sees me. I was engaged, and he lived with me. Moving out awhile back. Said he couldn't stand seeing me go from one thing to the next. It made him want to scream. I have two brothers that will not help me or visit. My Dad comes and mows my yard, but I know it is too much for him to take care of two houses at the age of 74. I can't mow because I get confused on which way to go on the mower. I can get lost driving. I know I am all over the road, but I can't stop thinking and looking at things along the way. I have been stopped by the police twice for speeding fast. I got angry with the first officer, because all i could think about was getting to the bank and he was in my way, I have no friends that ever comes to visit. I only have my two Dogs. I sold my Sandy, because I thought she would be better off without me. She just laid by me, and followed me from room to room. I miss her the most, and my only child. My step-children act like they don't know me. Hold the Grandkids back when they see me and won't let them talk to me. I raised all three step-kids, and kept the oldest grand Daughter all the time. Now I am nobody....... The Doctors yell at me and refuse to see me if I am a little late. Now they have said that if I'm not there 15 minutes early, the will not see me any longer in the whole Healthsource offices. I had a bad time, because they didn't give me my medicine. I called going completely out of control because I couldn't drive, and I couldn't find a paper for my long term care( Cigna). One person got on the phone and ask me if I was going to kill myself. I told her no, they were doing a good job of it there selves, and she hung up. Someone else picked up the phone and said I was already late, and the Doctor would not see me. They think it is funny when I go a week early. Everyone tells me what I need to do. You just have to do this, it isn't brain surgery. They don't understand, I can't. I don't even know why i am writing this. I have no money to pay my bills or to buy food. My check isn't enough to pay for everything, so I sell whatever I can to finish paying the bills. Then they all wonder why I did try to kill myself in the begining. I pray to God to bring back my Son, and not let him hate me. I want to see my Westie Sandy. I miss her so bad. I got to go. I shouldn't say all this on here. I got in trouble and made my Son stop speaking to me, when I was told I had cancer. I wrote it on my facebook page. So I could understand it. Now my Son Hates me even more. .........Bye

I found all ot the the comments very helpful.I to am going through the last stages with my mother, its heart-breaking..Both my parents are still living, both of them are 94 years old. The real problem is my father refuses to place my mother in a convalesant home, which makes it hard on me and my sister because we both still work. My youngest sister stays with them and cooks,cleans and takes care of both of them.We try to give her a break on the week ends so that she can attend church. But its getting hard for just one person to try and handle all of this on a day to day basis.

thanks....

Our family has drifted apart and this article has given me some hope in bringing us back together to help my dad with caring for my mom in the final stages of this terrible disease!

Everything was so so helpful !! Thank you !

My wife, Colleen, is 86 years of age and has been diagnosed by one Doctor as having "Vascular Dementia" as a result of a stroke and by another Doctor as having both Vascular Dementia and AD. After answering all the questions in regard to the stage she is in the results came in that she is in the mid-severe stage. I am the only caregiver and will soon be 85 years of age, but still in relatively good health and hope I can take care of my wife as long as possible. I do need a lot of good advice and instructions on what I need to do.

Maybe this was what I need now in the final stage. It is depressing when I can't even talk with my wife. She just seems to want to sleep all the time. Can't even carry on a conversation anymore. And grieving is becoming common. I think I have made all the necessary arrangements etc. for the end but somehow pray it doesn't come for a long time. I haven't even thought of taking care of me......I've put all my energy into taking care of my wife. After all, I would say, she would do the same for me. And, you know what? I will be lost without her. It will be difficult for me to go back and remember the good times we had for so many years.......when these past seven years have been so intensely involved with caregiving and she doesn't seem like the same person she was. I pray I will not look at these past few years but fear I will. I felt like the person who wrote the above article must have walked in these same shoes................???

Being able to know it is allright to think of " yourself" is not selfish. I recently have decided to use the hospice that I have been provided, to do things with my children. When Ray is with me all of my attention is on him. To be able to really hear what others are doing is very stress relieving. They often give me cheer me up phone calls, or listen to me when I need that. Thanks again for the information you offer in such a caring way.

I think this is one of the terrible diseases of the world. Thanks for helping me and other caregivers.

This article helped me because my mom is going through all of these things. I now know what to expect.

I am a caregiver to my 90yr old grandmother who has severe demetia, she is in hospice care, I don't know why she doesn't seem like she is dying she is just severly mentally ill, she is very mean and disrespectful she has no care for antbody but herself, if the whole family is not revolving around her every move she shows out, I have never seen such a display of selfishness in my life.it's becoming harder and harder for me to care for someone like this.I feel like I am at my witts end.

I think the farther along a person gets with Alzheimer's the less they are apt to talk about their reaction. Maybe not all, but surely some of us. I am presently thinking about the fact that I am now greiving and I see declining going faster than it use to and I wonder when the end will come and how will I react after she is gone. You may say, it's a blessing that God takes them. No way, I don't want to lose her, no matter what. I will miss taking care of her even when I get so tired I think I will die........I still go on. I recently did an interview with a Professor in our College of Health here at the University where I work.....it was to concerning scientist to gather more information through interviews of the Early Stages of Alzheimer's disease. It was not difficult for me to go back seven years to the year before my wife contacted the disease and talk about it. But now as we are in the late stage of the disease I find it increasingly difficult to talk about it. Her mind is so far gone that I fear any day now she will not know me. And then, how will I react? Academically to me this above information is very informative and interesting, but emotionally I have trouble employing some of these tactics. Perhaps I will. Just letting my emotions flow on paper today guys. Jean-Paul

As everyone must know - this decease is hardest on the people around the patient. Most times they are not in pain, get the best help from their family, and when necessary enter a facility that gives them the best of help. However, the guilt, the loss, the years it sometimes takes for an end is the worst that God has given some of us. I feel for the patients, but I feel more for the family around them - the patients sometimes know no different . Does this sound harsh? I don't mean to be.

Thank-u for your encouraging words, it really helps to know you are not alone in this journey.

Shes starting to not wanna get out of bed at all the last few weeks and is scared of Dad her breathing is weird and she looks gray and blue around eyes and mouth n has spots on her legs n feet that are turning purple. Shes coughing a wet cough randomly and her blood pressure is 58 over 43 How do I wake her up?

Specific tips on handling specific issues, like difficulties eating.

John wants to ride in the car all day long. When he is in the house, he will not sit still. He won't watch TV. He is in great physical shape. We take a 40 minute walk almost every day. I cannot find anything that will entertain him in the house without me.

After three falls in a short time I put my lovely wife Cynthia in an Alzheimer's Care Facility. I visit her at leasy every other day but at the age of eighty the trip (about 15 miles each way ) is getting more difficult. Cynthia is now wheel chair bound and has no idea who I am. She is always asleep when i visit her and I always manage to awaken her. I don't know if I am doing the right thing or should I just let her sleep?

I found these suggestions and logic very informative and it eases my mind a bit. The idea of anticipatory grief is new to me, however down underneath I know I have been experiencing it. The "long goodbye" as I see my wife drifting away. I will always remember the movie "The Notebook" and have wondered about whether or not it is true that an AD person can momentarily drift back into real life when they are at the end of their journey. Logic tells me that cannot be. Until recently I didn't know that Hospice can be of help in the last months of AD. I would never want to be deceiving with my wife..........so why am I thinking that when she loses the ability to recognize even me......could I then put her in a nursing home. We always talked about being like our family before us we wanted to die at home. But what if I am unable to continue in those last months or so of her life. I am somewhat older than she is and over the past six years of taking care of her I am finally considering having a qualified Nursing Home taking care of her. And then I would go see her every day....I promise. This bothers me to no end. I remain in a mode of wanting to take care of her to the end. J.P.

EVERY TIME I VISIT MY MOM AT THE NURSING HOME I WRITE DOWN MY WHAT SHE TALKED ABOUT, I SINGER TO HER EVERYTIME I SEE HER. I LAUGH WITH HER, I SURE HER THAT SHE IS SAFE, I CHECK HER TEETH, HER APPEARANCE, I HAVE LEARNED SO MUCH FROM CARING.COM. AND BY READING WHAT OTHERS HAVE TO SAY. I RECORD MY MOTHER ALOT ALSO.

I AGREE WITH ALL OF IT . THANK YOU. I AM ALREADYING EXPERIENCING SO MUCH OF THIS . THANK YOU AGAIN

Until recently, my husband and I did not ever get a break. We were drinking more and arguing all because of the stress. It took us months and alot of searching, but we found a lady who can momsit for us so we can get away for a few hours. We also take advantage of hair appointments: when she is getting her hair set or a perm, we go get a bite to eat. We try to get out on Fridays and when mom goes to bed, we go outside and spend time together. It is frustrating on nice days to not be able to go outside to do stuff with my pets unless I want mom saying where are you don't leave me even though I'm right in front of her. Can you talk to your doctor and ask him to prescribe a mild anti anxiety pill? maybe that is where the criticism is coming from. Mine prescribed lorazapam and now he wants to put her on prozac, because she gets so worked up over nothing. If you mom is criticizing your son, chances are it isn't HIM she's going after just some MAN. I would say, look for a caregiver in your area who is willing to work for some extra money. Sometimes a school district would have a person that can help and give you a break/ People who work for school districts have to have fingerprint clearance. Hang in there, and plan your time the best you can. --carol

VERY GOOD INFO. I HAVE A PROBLEM OF NOT HAVING TIME OF MY OWN... FOR SHOPPING;DOCTOR APPTS, HAVING COFFEE WITH A FRIEND AND JUST PLAIN GROCERY SHOPPING, AND TENDING TO MY PETS. I ALSO HAVE A PROBLEM WITH ALLEN CONSTANTLY DEGRADING MY KIDS, PRIMARILY MY ELDEST SON WHO SERVED IN THE NAVY AND IS CURRENTLY ON DISABILITY SS.. IT HURTS FOR HIM TO DO THAT

WOW! To: Do my best, thanks for your kind words. And I guess my brother isn't the winner for being least helpful, huh? Emptying Mom's bank account to "get his" before you use it all to care for her? Sheesh! Of course, that's part of the reason that I've set up her accounts the way I did, so that he is listed as the 2nd beneficiary, but he can't just walk into any bank, prove who he is, and empty anything. I have POA, so I'm the only one who has access. I just pray every night that her money lasts as long as she does. I also have 2 sons in college, one out already who lives with us, and a daughter who will be going to college next year. So I can't afford to NOT work, but I can't find any full-time jobs, so I sub at high schools and look for retail work when they are hiring seasonally. I never expected life to be easy ,but this is way harder than I ever anticipated!

Yvette, I am in the position you are. No one probably will help but they sure will offer criticism and complaint. My brother hasn't seen his mother since Christmas and I guess it was too much for him because he hasn't acknowledged her birthday or mother's day either. As far as the money, well sometimes you have to spend it to support your mother's care and make executive decisions that others won't agree with. You need a power of attorney both financial and medical. An elder care lawyer said to me the best thing you can do to keep the financial peace is share statements with siblings. I was going to do that but then my brother emptied out one of her savings accounts so he could get 'his share' before I 'spent it all'. Now mom lives with me and I get no help whatsoever. It's kinda good, though, because I don't have to fight with him anymore either!!

The hardest part about suffering is we can't take it away, alter it or change it in any way. This is the cruelty of life. Sometimes I feel very guilty because my mother absolutely drives me crazy and then I see what you are going through, Fiona, and I realize I would be so sad too and feel guilty for all the times I've yelled or scolded my own mother for doing stupid repetitive things like the pacing and the whining and the constant trying to get out the door. But at night, when she lays in bed, she gives me the biggest hug and tells me how much she loves me. Embrace those moments and kick out the rest, I say. As long as a day is living with someone with dementia, overall life itself is too short!

Mom fell again yesterday, so the Assisted living place where she has lived and received excellent care for 4 years sent her in the ambulance to the ER to be sure she had not caused herself any damage. Her head checked out alright, her hip was fine, but she fractured her left wrist, so they put it into a splint and I was finally able to take her back to her place after over 4 hours there. I'm in the midst of trying to get an apt to have a cast put on it...waiting for the nurse to call me back to see if I can get her in today. She can't put any weight on her left hip anymore, so she's in a temporary wheelchair. The head nurse gently suggested it was time to call in hospice, since Mom has been declining so fast. They are going to meet me today to get her on their program, which will include a wheelchair. I will send my brother an e-mail to let him know what is happening, but as always, all of the work is on me. I have a picture of her and my late father on my fridge...they were over for dinner when husband and I were first married. She is the age that I am now. She looks so happy and lively. I'm still crying...I really miss my mom. I feel like I'm taking care of the shell of who she used to be, but I love her so I do it. But it hurts so much, and I try not to think about it most days. Thanks for letting me vent somewhere.

thank you very much for having this on my pc. I am so discourage right now . No one want's to help me and I sure need help. My sister hasn't come down for 7 yrs, that's how long I have taken care of mother. Now mother has a lot of money but my sister said she wanted her bank acc. but I said no way. I have never taken a dime from mother's acc.and never will. We are wondering if my sister will come down when everything is over. We have a daughter of 45 yrs old and a son of 46 yrs . But they live so far away. What should I do ?please help me . Thank you so much . Just talking about it , helped

My husband has Lewy Body Dementia and it is quite different from Alzheimer's Disease so I don't know if the rating scale would be comparable.

My husband's sundown syndromes are so severe that I often beside myself. He gets paranoid, delusional and hallucinates. It is often in the evening when there is no support around and then I am not sure I want our children to see their father like this. How can I cope better? I sometimes get so depressed and scared I go to bed and pray that God will take me.

This article was awesome. My aunt came to visit my mother and wherein I thought it was to spend time with her, it was to evaluate my home life and my ability to care for my mother. She was very mean, belittling and insulting and insisted my mother go in a home. In some cases it would be easier for me but in this case, I am with my mother every day and loving her the best I can at the end of her life. It hurt me greatly and I am basically all alone in my family when it comes to caring for my mother. It is very tragic for them to miss out on her, even though it is a lot of work. She took care of me, I take care of her. DONE DEAL!