Coping/Handling with the beginning of Dementia-Alzheimers

Hi Imelda,

I'm so sorry you're experiencing this with your mom. It definitely has to be tough.

Have you ever tried, in response to "I just can't say anything", saying something like "I definitely want to talk. Give me just a second and we'll sit down together." It definitely doesn't sound like you're saying anything wrong, I just trying to figure out if your mom is experiencing frustration or a need for attention. Either way, if you let her know you delaying for a moment so you can give her your full attention, she'll be calmed?

Another thought that comes to mind is that your mom is having a power struggle...kind of with herself. Saying destructive things like "I wish God would just take me" sounds like frustration with her condition and questions of her worth. So do you think it could work to get her involved in contributing and being in control of something - anything? I was looking at pictures of my dad, who passed four months ago, just yesterday and I could see a difference in them based on when he had purpose. The light just wasn't there in the later pictures. Perhaps your mom is feeling some of that.

I fully admit that I haven't provided direct care for someone with dementia or Alzheimer's, so read my thoughts with that in mind. You may want to post in our Alzheimer's group (http://www.caring.com/community/groups/alzheimers-support) The folks there may have some better words of wisdom.

I'll be thinking about you! Keep us updated!

Are your mom and mine related maybe?

I have had some of the same experiences with my mom . There isn't much I can do either. I have tried many diff ways to help her understand. I've tried the compassionate loving approach. The "you need to be more respectful" approach. The reasoning approach. The silent approach. I have tried many things, and none of them have changed my mom's attitude.There is only one thing that has helped us as we continue to live together...TIME.

I found that over time, as she adjusts to me and I her, that she is mellowing out a little bit. Part of it has been understanding that I'm her caretaker...she didn't want to accept that or understand it at first...but after 6 months of being with her, things have shifted some.

Now, even though she has many moments of negative speak and anger outbursts, I have found ways to pre-occupy her time so she isn't focused on being helpless, which causes much frustration for her.

I found that she likes word-puzzle books and can still do them to some extent, so I buy stacks of them and give them to her one by one. Also, she's always knitted and crocheted, but with the dementia she's limited as to what she can do...so I buy the yarn and make suggestions to make simple items she's capable of doing and she does.

Remember, it does take time and some craftiness...I have learned what to say and not say to her and around her so as to not 'trigger' negative responses. Reminds me of raising a child.

You are being blessed for the sacrifice you are making my dear, even if you don't 'feel' it. You are to be commended for taking on this difficult task..it's life changing! For both of you!

Hi dear Your mother would hate what she is doing to you. With that said, remember it is the disease talking, not her. She has lots of emotions - and she is angry and scared. But she can't properly place her anger and she can't properly even express it. How frustrating for her and for you!

My mother is 88 years old and does well - 5 days a week. The other 2 days she is "disagreeable" and she typically picks the worse possible time for me when I am most stressed or short on time. My brother is useless. He lived near her (20 minutes away) for years and didn't lift a finger - I finally moved her in with me just a few months ago after driving 8 hours each way several times a month to try to care for her from afar. I know your pain.

My mother's sister was alzhiemers also, and she was completely off - she went fast, and she went into a violent mode at the end. She had to be behind locked doors. She was mean, and so unbelieveable difficult! I don't think my mother will go to that extreme, but I have learned that alzhiemers has a great deal to do with emotions. They cannot remember what you've said or done, or what they've said or done, but they do associate feelings with things. My mother knows I love her, which is supported by her friends who regularly call her - thank heavens for them! They keep reminding her how great it is that she is with me. Anything you can do to help her feelings about herself should help. Remind her how great a housekeeper she always was or how she taught you to cook, etc. Take out some family photos and talk about people she loves/loved. Give her little projects like emptying the dishwasher (I always have to re-do what my mother does, but it gives her something constructive to do).

My mother has said several times that she is so tired she would like to fall asleep and not wake up. I always try to hug her when she says stuff like that and tell her that it would be horrible for me if she didn't wake up - how much I still need her. And she smiles and says" do you really?" and that seems to make her feel better. It may not work just like that with your mother - alzheimers is soo unpredictable and there is never any answer that works for everyone, but I can identify with your frustration and I hope some of my thoughts will be helpful to you. Take care of yourself. A bubble bath, glass of wine, and Nat King Cole on the stereo will work wonders if all else fails.

You are receiving many answers on how to handle your mother. My question would be what kind of doctor are you discussing her case with? Have you seen a neurologist? Have you gotten a second opinion? There are medications that can help the types of behavior you describe. My husband has been helped by these medications and is now more calm, happy, and has a fine sense of humor.

The amino acid GABA with vit. B-6 really helped calm my mother down. This worked absolutely fantastic. All her depression and angry went away.

Oh Honey, I'm totally with you! I moved my parents in with me 7 years ago when my father (the most fun, loving, strong, wonderful man) started showing signs of dementia. He was with us for 2 years before we finally had to put him in an alzheimer's unit at a nursing home. He became so combative and was so physically strong that we just couldn't handle him any longer. That was the worst day of my life up until the day he died which was a year ago last March.

Shortly before he died, my mother started showing signs of dementia. After Dad died, Mom quickly became worse. Mean, negative, self-centered, paranoid, temper tantrums.....(which were her normal traits all her life, just worse now).......I called her doctor in tears, told him what was going on and then forced her to go with me to the docs. (she was going to call the police on me she said because I wasn't feeding her or treating her right!). We got to the doctor's office and she was just as sweet as could be (I had told them I didn't know which woman they would see when she got there). Anyway, he felt she was depressed and maybe starting with dementia, I thought, gee, no kidding.

He started her on a small dose of anti depressant and it saved us. The meaness is pretty much gone. I have to say he also started me on the same thing and that might be a big help to the situation as it seemed to give me more patience. I wish I had it when Dad was here!

So my first word of advice is really let it all out to her doctor and get her some meds and believe me, it wouldn't hurt for you to have something to help you deal with it also. Support groups are great but they can't come home with you!

Next, I've learned in these last 7 years with my parents that so much depends on how I react, my tone of voice, my facial expressions, etc. If I can just remember to pause for a minute before I react, collect myself and not take it personally, things go so much better. Remembering its the disease didn't help me much because, as I said before, these were all traits my mother always had, they are just exacerbated now by the disease so its very hard not to think she could help herself if she wanted to. I find myself thinking she is doing it on purpose to push my buttons for attention. And I do think that plays into it. But alot of it she truly can't help. She's so scared.

It's very hard not to walk around thinking "it's not fair". And I know now better than ever before the truth of the statement, "life isn't fair". It's not fair for us or our parents. But, like you, I would do it again. I have a sister who lives many states away and though she is supportive, can't be here to help. And even if she could be here helping, I would still choose to be the one to take care of my parents. So when I feel resentful, I keep reminding myself, this is my choice, I wouldn't have it any other way.

Read books about dementia. There are so many good ones out there. I try to find ones that deal with the present issues of living with the disease. At this point I don't need to read all the medical jargon about what causes it, too late for that. I would love to list the ones that I have found the most helpful but I don't know if that's permissable on this site. Look for the ones about handling the day to day issues, how to talk with people with the disease, books by nurses or journalists who have spent time with people with the disease.

Sorry this got so long but your post was so much like my situation. I really feel for you!

To sum it up:

Get meds for your Mom and maybe you.

Take a deep breath before you react.

And sometimes the only thing to do is go into another room for a few minutes. I will tell my mother, I can't talk to you about this right now until you calm down, and I walk away and let her stew. I try very hard to remember to say I love you and to hug her even when I might not be feeling real loving towards her!

Don't argue with her or try to reason with her when she's in that frame of mind. It just doesn't work.

Read everything you can get your hands on about living with dementia.

I wish you luck from the bottom of my heart. We are on a very long rough road. But when it's over, we can know we did everything we could with love and respect for our parent and put our heads down to sleep at night without remorse. God, I hope anyway!

I think we can suggest books. I would advise reading "Learning to Speak Alzheimer's" by Joanne Koenig Coste. I believe the author is one of the experts on this web site.

If you are a male caregiver for a spouse, I highly recommend "Coach Broyles' Playbook for Allzheimer's Caregivers", www.alzheimersplaybook.com. PS: women can read it too!

Although I am so sorry to hear about your problems, on the other hand I am relieved to hear all these stories of "mean moms". My mom has been diagnosed with "dementia with secondary medical non-compliance". I can't get anyone to look further than that to get to the cause of the dementia because she won't go to a doctor.

I live an hour and a half away from her (she just moved to the area) and I am an only child. She won't take her meds - we've tried the home health service but she just lies to them about taking the pills and when the nurse threatened to start counting them, mom said she's just flush them down the toilet instead of taking them and the nurse would never know the difference. Although everything is documented, when we go to the doctor, he just seems to want to brush it aside. And even if we got her medication - I know she wouldn't take it!

She is mean spirited, very self centered and manipulative and everyone tells me that I have to "control her". Hah! that's like trying to control a tornado. She is still living on her own. I can't move in with her (and she "doesn't want me around all the time" anyway), she can't move in with us and she won't accept a stranger in her home (we were going to get a home care person and tell her it was a housekeeper). We have tried to propose moving into the same neighborhood but she doesn't want to hear it because "nothing is wrong". Even though she says she doesn't want me around all the time, I have spent nearly every day of the last three months with her from morning to night and my marriage, my health and my business are starting to suffer - not to mention my own sanity.

It's pretty obvious that she can't manage on her own (although she thinks she is doing fine) but I can't control things. She went for an eye exam to get her drivers license renewed and failed it - but the doctor signed off on it anyway!!!! I was hoping that at least I could get her off the road but she just throws it up in my face that she passed the eye exam! I am ready to strangle that doctor! It would be such poetic justice if the first car that she backs into is his! What are these doctors thinking when they ignore or don't deal with some of these issues because they don't want to be the "bad guy"?

I don't even know how to start managing this problem. Financially, I do have control of her resources so at least that worry is not a problem - but the rest of it is like being dumped into a nightmare. Any suggestions on managing these first stages for a newbie? I find myself hoping that she will get worse quickly so that the problem will be so obvious that people have to deal with it and I can get her into a care situation of some sort without her permission. Then - I realize how terrible that thought is to wish for and immediately am torn up by guilt.

Sorry for the novel but after hearing your stories, it seemed like y'all might understand and be able to give me some advice.

Thanks in advance for any thoughts...L

IMS -- on the driving thing -- just went thru that whole nightmare of taking away the keys. My mom was extremely unhappy, of course! To put it mildly!

At the end of the day, THAT DOES NOT MATTER!!!!! An accident can be a fender-bender, or someone can really get hurt.

As my sisterinlaw put it to her mother, 'You raised me to be a responsible person. I have to act responsibly now, and tell you that you cannot drive any more.' I used the same speech.

While it was weeks of hell after took away the keys, whle there was not a lot of support, and while it was -- and is -- extremely inconvenient for me to suddenly be the parents' chauffeur (as a side note!) I really did not think there was another option. Disabled the car and put it back parked where she was used to seeing it (after was accused of stealing it, since had at first garaged it elsewhere) and from time to time Mom would get her stuff together, go out, try the house keys in the ignition, find they did not work, rant and rave, then decide someone would fix the car soon and go off to do something else (pull weeds, polish silverware, etc) and forget about it for a while. Very sad to watch. Heartbreaking, actually.

At present, she has ceased the rant and is even ok with selling the car -- and we have hired a CNA to come in once a week to get the parents out shopping or to lunch or to appointments. They look forward to that day. Truthfully, my father is relieved. He's debilitated by a variety of conditions, tho he, too retains his drivers' licence -- and I would not take that official piece of paper away from either of them. Though am awfully glad I took away the car keys!

hey imelda, i think i got you beat. my mother is also mean and drinks heavely. total chaos. aloha

Oh Robert - we are in the same boat! Mine does too. So sorry..

Jeng - your sister in law had a brilliant answer - and you for using it! I'll try the same thing.

It amazes me that we have to be so creative in managing them and keeping one step ahead. I wonder if they felt this way about us as we were growing up ;->

Thanks for the replies and suggestions...

Lori

Although it is comforting to know I am not alone, I sympathize with all of you.

I ran into so much denial about my mother's AD. I had to read books and attend seminars and support groups to become educated enough to write a letter to Mom's doctor. Then she called me and confirmed my "diagnosis".

Some books I found helpful were:

1. The 36-Hour Day by Nancy Mace and Peter Rabins

2. A Caregiver's Guide to Alzheimer's Disease 300 Tips For Making Life Easier by Patricia Callone et al.

Fortunately my mother decided to sell her home and move into a senior citizen apartment before I suspected she had AD. With 500 miles between us, I have chosen to consider the staff and residents in her independent living building, her nieces and nephews, friends, church and club members and her former coworkers as members of her caregiving team.

When I was growing up people knew it took a village to raise a child. Now it takes a village to care for an elder. Anything one member of her caregiving team does (no matter how small or insignificant they may feel it is) is one less thing I need to do.

When flight attendants give their emergency talk, they tell passengers to put their own oxygen mask on before they try to help someone else. So remember to care for your loved one's caregiver (you) first.

Hi All I'm just using this forum this morning to whine....I'm sorry. I need someone to whine too. My mother is doing well, but I am trying to move, deal with her and the alzheimers stuff, work fulltime, and support my daughter in college 13 hours away. The move is putting me over the top, and my mother is trying to help (bless her heart) but her inability to focus makes it hard for me to get completely organized and get things done for the move. She has stuff everywhere - little bits and pieces of things, papers, lotions, etc. She understands the concept of organizing (she was once THE most organized person I've ever known) but she cannot functionally do it anymore, yet she wants to "do it herself".

I am worried, perhaps unnecessarily, that actual "move day" will be too stressful for her, which means very stressful for me, and I don't have many options as we are each other's nearest relative by 8 hours. So, anyone have any suggestions you could throw my way? Forgive my whining - I am just worn out at the moment.

Thank you for your insightful words Caregiver P.

You are so right about how it takes a community of people to help in the care giving of seniors, and yet so many of us are left to do it either alone or with little to no real family support.

I know of many elderly who are not willing to get help or because of their own illness, are incapable of understanding they need it. My own mother, whom I care for full time, is anti-social and doesn't want to go out due to paranoia and physical pain. This puts a tremendous burden on me to want to keep her busy...but I cannot. I have had to deal with the guilt that comes from doing what I must to take care of myself and cannot 'keep' my mother occupied or entertained all the time. As I step out more to take care of me, I take comfort in understanding that I'm doing the best I can under tough circumstances.

From what I am reading about on your parents; my godmother (83) fits right in. She is mean and has no respect for anyone. She grew up during the war and was even in the french air force. She had one child with which her mother raised until he was 8 or 9. She was young/beautiful and had a career. She was the high spirited woman who had her martini with the men from the office. She wore all the right clothing and jewelry. She was also a snob. She lost her first and second husband and now is "dating" with another gentleman who is trying to help her. Hes with her 8 to 9 hours a day. She is also mean with him as well. I just do not know how to handle her being mean, demanding orders like shes the queen. I do believe the queen hold more manors than she. There is no reasoning with her. She has always been self centered and enjoys debates. She wants complete control over everything. She broke her hip a month ago - and I had to get help - for me - for her - of course the cost of agencies are high - and after two week she threw us all out - her dr wants her in a Alzheimer ward/ nursing home - but she refuses saying she does not have that and is fine with being in her home. In the past shes started two fires from the kitchen. There is no reasoning with her - even during the good moments. Her meds are as high as the dr will allow. No other medicines to make her happy. She does not enjoy crafts, cooking, or reading. We go through old pictures which helps but gets bored with it fast. I am her P.O.A. - but she has control over her spending. When does that go into effect of taking that away from her..??? I need help - to better help her... and my family who sees me - after I get home. Help Me!

Hi I am sure you are completely overwhelmed right now. If you have POA, go see her doctor and talk this thru with him/her on your own - without her. Ask for a referral to a specialist in dementia/alzheimers (usually a neurologist). A specialist should know how to talk with her and can assess the situation and give you some advice. I personally believe at a certain point the meds don't do any good. Plus she is probably not medicating herself properly either. My guess is that you also need to see an attorney to determine how far your designation goes in controlling the situation now. If you have to, you may have to have her committed against her will to a hospital - if so, each state may have different requirements you'd have to meet. The attorney can give you advice once you have a good assessment from more than one physician you can share. Also, you can have social services come in to talk with her and see if she is putting herself in any danger. You KNOW she is, but it sounds like it would give you some sense of validation if you had someone else involved. In addition, you are right - there is no reasoning with her. Sometimes I find it best to change the subject, and not ask, but just "steer" my mother to doing what we need to do. Your godmother had to be a strong woman, determined and persistent. These are qualities that worked well for her all her life, and that she is now relying on again. I have found that these type of ingrained traits are still there, only often mis-directed with dementia. Sometimes just acknowledging to her that she has always been a strong person, but that even the strongest person needs help sometimes, may appeal to something in her. It is so difficult because each person in this horrible disease responds so differently! As far as things to do, perhaps appeal to the physcial side of her - if she can get around ok, encourage her to walk. See if you can "introduce" her to a retirement living situation by finding a local center that offers "day care" and giving it a try once or twice a week. Talk to the center's staff to see what suggestions they might make also - they have a lot of experience and can help you. I can also appreciate that you are in a very difficult situation since you indicated this was a "godmother". Where is her family? If you are not a member of her family, I can imagine it might be even more complex. I don't know if I've offered anything of help here, but I hope so.

You are absolutely right to take good care of yourself. If you don't what in the world would happen to your loved one if you ended up in the hospital. I wrote a mini book, Self Care for Caregivers: the most important person in the experience is YOU! I believe that from the bottom of my heart.

poly ASK, ASK, ASK! Relatives are not the only ones who can help, and often they don't anyway. Call a church, ask a neighbor, ask someone at work, ask a friend, call an agency, but do ASK. We always feel that we have to do it outselves, and we don't. Be specific in your ask, "I am having to move and need help packing boxes." I am moving and need someone on moving day to be with Mom, take her to a movie so I can get it done fast. ASK please. People are willing to help and it gives them the great wonderful feeling of giving!

HI. I am experiencing the same things, but with my husband. Angry all the time and suspicious of everything I do.. I am glad to know others are going through this and I am not as mean as he says. The more I try to do things for him, the more he expects... Thank you.

My heart goes out to you. I can definitely relate to your situation. I was Caregiver of my Mother during her last four years on earth, with AD. I have two sibbligs, neither of which ever helped. It is a very tiring, stressful job. It is definitely too much for one to bear along....get all the help you can (both for her and yourself).

There are so many resources now to help you....join support groups...read all you can about it Pray non-ceasingly and give the situation to God. I wish I had been more informed back then. There were times when I was not patient with her and yes, even got angry at her. That is perfectely normal. That is too heavy a load to handle all by yourself.

She will go through different stages....fear, anger,and even becomes very repetitive. Just let her tell you over and over what is on her mind. Treat her as if there is nothing wrong with her. Touching is a very positive, loving act. My Mother especially loved when I fixed her hair, or painted her nails. Speak softly and kindly to her. Talk about things she used to enjoy, old friends, music, etc.. if she is still able to do that.

It is, however, very important that you take time out for yourself.....even take a day now and then away from it, if you can. Get someone to sit with her while you get yourself pampered. You will feel refreshed and stronger the next day, for having done that.

Try to remember that when she does annoying things to you, that if she were in her right mind she most likely would not be doing them. She does not mean to irritate you, even though it looks that way. It is just that she can't help the way she is. My Mother felt so desperate; knowing she was not herself and could no longer be independent, but still wanting to be. How very frustrating that must be!

I hope you will seek out groups that are going through the same thing as you are. You can learn so much from them. At the time my Mother passed, support groups were almost non-existant.

If you belong to a church, or work, ask everyone to pray for the both of you. The power of prayer is so awesome! The problem won't go away, but you will feel the burden has been lightened, as you share it.

My prayers are with you.

Suzanne

I found "how to say it to seniors" extremely valuable. Gives explanations of behavior plus 'scripts' for various scenarios (like how to discuss assisted living moves, etc. Right now I'm reading "elder rage" by Jacqueline Marcell. Subtitle is 'how to survive caring for aging parents'. It has a great chapter on behavior modification.

Oh my gosh - This is exactly how my mom behaves. I haven't even read through all of the replies yet, however, because I have kind of an urgent need for advice. Last Monday, my brother and I met with my mom's doctor to tell him about all the various strange things she has been doing, saying, and thinking, etc. He agreed that it is more than likely some sort of dementia and discussed medications and coping methods with us. Today, in just a few hours, I will be taking her in to him for her A1C test. However, she is not aware that he is going to also address the dementia issue with her.

Anyway, my brother and I had agreed that he would somehow casually "mention" it to her this morning, in the hopes that if she is not caught totally off guard she will not throw as much of an ugly scene as we are expecting. But, he just left and went home without saying a word! I went after him and asked him what I should say to her and he said he didn't have any idea.

So . . . should I say something to her prior to taking her to the appointment in a couple hours? I literally feel like a deer caught in the headlights. I am her 24/7 caregiver, (she also has CHF, kidney failure, is 100% incontinent, blind, etc., etc., etc.,), and, therefore, already am her number one target. And, she has this uncanny ability to pull herself together for others and sound totally rational as she accuses me of things like refusing to fix her meals, calling her names, stealing her food, etc.

I'm not sure how soon this reply will post, but if anyone out there happens to read this, I would be SO grateful for any suggestions or input! Thank you so much!

Laurie

Laurie,

I know how you must feel. Try to relax and I would let the Doctor discuss it. Coming from a professional might be more acceptable to her. God bless you for all that you are doing. My two brothers did not help out with my Mother either.

Hopefully the Physician will put her on some medication, and even you, too, if it is needed. Do not be afraid to discuss your fears and anxiety with him....perhaps just before he enters the room where she is.

I am holding you both in my prayers. God wants to help.....don't hesitate to ask him for strength to see you through this. You will need all the strength you can get.

You ARE strong....just keep the faith. God will see you through this and all future things.

Love & Prayers,

Suzanne

Thanks, Suzanne. Your words were exactly what I needed to hear!

Laurie