I don't know how else to say it, but my mother is very stubborn. Anytime I bring up the subject of getting her eyes examined, her toenails clipped, going to the dentist, washing her hair, getting washed, she nearly goes ballistic. She is definitely not easily swayed into doing things. She insists that she is taking care of those matters, but she really isn't. I tried bringing a special kind of toenail scissors over to their house lastweekend and she wouldn't let me trim her toenails. Her toenails are so long, but she insists she likes them that way. She cannot see very well anymore, and she won't go to the eye doctor. She often sits at the kitchen table with her eyes closed and says she has trouble opening them. I ask her if I can put some eye drops in her eyes but I get an emphatic NO!!! I would like to get her some at-home assistance but my father is afraid she will hit the roof as she is very temperamental and high strung if we go against her wishes. She is in bed most of the time but she does get up to eat her meals and is able to intelligibly articulate at times. She cries a lot and asks for her mommy (my grandmother who passed away some 25 years ago).
I'm not sure what we will do for the holidays. A few years ago she enjoyed sitting in the living room and looking at the Christmas tree, then last year she didn't really care if it was up or not. Now this year my dad and I are not even really interested in fussing much with a tree. We'll probably just put up a small tree. I plan to hang some lights outside their house. One tries to maintain an upbeat attitude, but sometimes the facts of what is really happening to a loved one takes its toll and it's hard to find the spirit of the holiday as it brings back so many memories of what was. What do the rest of you do for the holidays? Do you decorate like you once did?
This stubbornness is typical of the disease. The person feels out of control of her own life, and therefore resents anyone making suggestions.
When I was the caregiver for my Mom, there were hassles every day. "You don't smell good, would you like me to help you wash and change your clothes?"
" NO! I just took a shower! I do not smell bad!" (both not true.)
"It is below freezing outside, you really need to wear your warm jacket. "
"I am NOT cold! Don't tell me what to do!"
It is really really hard. This seemed to happen to Mom when she was in stage 4, approaching 5. Now that she is in Stage 6 or even 7, she does not protest about anything any more. She has lost that spark, the attempt to be independent. Now she is fine if someone tells her exactly what to do. Making her own decisions is impossible now.
For the last 5 years I decorated her apartment for Christmas except for the big tree. There was no room for it after I moved in with her and we got 2 recliners for the LR. I hung decorations on all the windows and on the apartment door, hung up cards that came in, sent out cards in both of our names, put candles on the table and holly on the walls. I am not sure if any of this made much impression on Mom .. at first it did, and she was delighted with new things I bought for the house. I still don't know what happened to the tree decorations of my childhood, which she used until Xmas 99 .. by Xmas 2000 they had disappeared. I don't know if she threw them out, or gave them to the other daughter, or to someone else.
We always went to my brohter and SIL for Christmas dinner and present opening. A few of those years I spent Christmas here in IN with my daughter, then Mom stayed with my brother.
Up until last year Mom could still sing the old carols and open presents with enthusiasm, but she just stopped giving presents quite a long time ago, which was fine with us. She enjoyed going to church, but there were times I was embarrassed because she had an 'accident' (another of her sutbborn refusals was to wear depends or any kind of incontinence help) .. but I'm glad now that she was able to go ...
Keep up the good work with your Mom. It is NOT easy ..and the caregiver can get so burnt out that they need a break, or even a change in the AD patient's place of dwelling. We finally had her move to my brohter's and I went to live here nearer to my daughter and grandkids. Now she is in a rehab home/nursing home after a fall and hip fracture ...
God bless you and all caregivers,
Last edited by Martha H; 11-01-2005 at 04:55 AM.
Thank you Martha for the kind words of encouragement. Your mom sounds like she does far more than my mom, but I know you've had your struggles as we all do. Yes, you're right, my mom is very independent and insists that she has done things that we know she hasn't. They say pick your battles which is exactly what my dad and I do. My mom and dad live together in their own home. They've been married around 60 years. God bless 'em. Do you get on well with your siblings. When you mentioned 'the other daughter' I took that to mean there might be some strain there. I know I don't really have any relationship with my sister as she lives out of state and really doesn't seem to be interested in my mom's condition/deterioration.
I try to show my mother I love her everyday by calling her several times on the phone. I go there a few times a week and do her laundry and buy her winter night clothes and cook for them. It's often a challenge when I go there because she can be very combative, and verbally abusive, making anything I attempt to do while I'm there very taxing on me. I know my dad is weary but I tell him to hang in there because he knows he will be lost if she should pass on before him. She says she will outlive all of us, which I wouldn't put past her.
I am sorry that your mom is not very cooperative. But, like others have said, it is probably just a stage of AD. My dad is not combative, so far, but still likes to have some say in most matters. He will let us help, but my mom is a different matter.
She will let us do things around the house and drive them when we are there. She drives my dad the rest of the time. They try to go out 1 time a day, together. The rest of the time, she goes out in the am, while he is still asleep! She is a sneaky little mom! :>
But, my mom, who just got diagnosed as Alzheimers/Dementia patient - level 2 - 3, has uncontrolled diabetes and many other health problems. She does not do what the dr. says, does not have the tests or take all of the meds that he gives her. He had to give her an ultimatum (sp), either do what I prescribe, or find another dr.
So, she did start taking some of the medicines (do not know if she will keep on taking them) and did have a blood and mamogram test. Also, a osteoporosis scan. But still has not done her colonoscopy. My mom was in such bad shape, that she had to have 2 units of blood a week ago!!! She did get to do it outpatient, as she hates being in hospitals! Anyway - TMI - she will not let me do much of anything for her. Really wants to stay independent and make all her own decisions!
You are right about picking your battles. Save it for the big ones. The ladies on this board are trying to teach me to have patience and think before I talk. Like how you say something. I used to say. You need to do this. and You should eat that, not that. But, now, I either, just sit silently for a minute or two, or I think of a better, nicer way to say want I think. Sometimes it works and sometimes it does not. I do not fight with my dad, just my mom. And not as much as I used to. With my friends on this boards help and my anxiety/stress medicine, I am much nicer to both of my parents and it makes my visits/work with them go so much better!!! :>
Still working on it tho. I think that some people are just more unwilling to let go of their independence or maybe just like to egg some people on (like you and me and our moms!).
My parents are almost in the same boat as yours, in some respects. My parents still live at home together. They have been married about 58 years (?). Except that my dad is level 5-6 and has parkinsons also and my mom is level 2-3 and has other illnesses. I do not know how much longer they will last at their home together without some help. My mom would fight the outside help, just like your mom!
We are going to have Thanksgiving at my house with lots of relatives (even some from out of state). They are coming in case my father does not remember them by next summer. At Christmas, we will Christmas Eve at my mothers as usual. Except, like the last 2-3 years, my sister will come and stay with them (lives out of town) and do most of the work of getting the meal together. I will bring a few things - maybe more this year! We just never know when it will be our last together in their old home. It is about 45 years old and we mostly grew up in it. So... One more time!
Sorry for the book. I guess it just had to all come out!
Take care of you and your parents. And all of you other caregivers take care of you too. Love, Wannabe
Thanks Wannabe. I sorta got on my dad's case this morning over the phone as I asked him if he had given my mom her thyroid med and he said he put it in her coffee, as she told him yesterday she would not take any pills. I got upset with him because I already told him the pharmacist did not advise putting the meds in hot coffee. I told him to be creative and take a sharp knife and cut out a small circle or triangle in a banana and pour in the ground up pill or put a slit in a grape and do it that way. I told him he didn't care and then I told him I knew he cared but that he wasn't being creative. I know he gets weary being with her 24/7 but I also remind him how lost he would be if she weren't around anymore.
I spoke with her earlier this morning as I always do just to say hello and see how she's feeling. She was sitting at the kitchen table watching some t.v. with my dad.
I do realize that you care deeply and want your mother to get her pills as she should, but your father probably needs a break. The 24/7 care of a fussy, uncooperated person in draining to the max. This has nothing to do with the love your parents have shared for decades. The person who lives with your father now is less and less the woman he loves. He is likely to be in mourning for his beloved wife who is in there somewhere. One of the stickies at the top of this thread is about The Imposter.
Your statement about reminding your Dad that he'd be lost without your Mother concerns me. I must kindly say that telling your father he'll miss her when she's gone is not helpful. That's sort of like saying "Deal with it, better combative and abusive than gone." I doubt that your mean it that way, but like Martha, Sally, and Barb in their caregiving fatigue, it's likely that your father needs time away from Mom. He's not a young man. There are facilities around that offer respite care for AD patients so their caregivers can live and rest for a few weeks. That may be needed. Whether or not your father has time off, he needs great understanding for himself and all he has to cope with. Methinks your mother is not your only bundle to care for.
In case you are unaware of this, I never cared for my widowed mother myself. When she needed an ALF, I lived too far away and by the time my family and I moved here, Mom was too far down the AD slippery slope for me to do it (I have lupus).
Thyroid medication should never be taken with food, caffeine or anything with calcium in it. All of these things diminish the potency of the medicine. The medicine should be taken on an empty stomach (1-2 hrs before or 2-3 hrs after meals and at least 6 hours from calcium supplements).
Just a thought here. What if your father told your mother that her thyroid medicine is a vitamin that will help her feel better and enable her to do more things that she loves to do? It just might work.
As you know, we need to be clever and imaginative and inventive and sometimes even downright devious. Whatever works....
Thanks, Barb, I know what you mean about not giving the thyroid meds with hot beverages. I didn't realize that giving it with food was also bad. I explained to my dad that he mustn't give it to her with her coffee as he did this a.m. He tried to tell her that he got her new meds and that she needs to take it, but she refuses. I'll tell him to try the vitamin suggestion. I'm not sure how else to get her to take it.
Barbara, I appreciate your input but I don't think you really understand the situation that is going on with my mother and dad. My father is the one telling me that he would be lost if she weren't around. When two people marry, their vows include "for better or worse, in sickness and in health." It's true though that the person that they fell in love with years ago isn't the same person, but who is. Everyone goes through changes as the years pass. My dad doesn't get much in the way of breaks but he really doesn't want to be away from her that much. He goes grocery shopping, errands, etc. On Sunday when he was leaving for church, my mom got up and held onto his arm, crying like a baby asking him not to leave her, so he ended up staying home. I usually get there after he leaves but I'm going to start getting there before he leaves so someone will be there.
My dad is aware of the alz support groups in their area, but he doesn't want to stay away from my mother that long. I gave him two very good books, "The 36-Hour Day" and "The Dignified Life."
Is there any way that you and your dad might be able to enlist the help of someone so that you and him can have a father/daughter day? You could use a day out too and I think he'd really enjoy your company and you his.
If you can't do a full day (it might be hard to tear your dad away from your mom for that long), maybe lunch or a movie?
When you next get a chance, perhaps you could look up and find some adult day care places. Some Elder Living Centers (cannot remember the real name), have day care too. And some have AD adult day care. If you live in a semi large city, there should be one or two. I have found 2 in my parents area. For when my mom, finally hits bottom and realizes she cannot leave him at home, any time at all.
I know you and/or your dad, probably do not want to, but after you find these places, just tell your mom you are taking her somewhere else and take her there. It is probably the only way you are going to get it done in your situation! Oh yeah, you do have to fill out forms and have her dr. fill out a form too. But, you should get it all ready, and then tell your dad. Work on him a lot, but nicely.
I do not know what you can do about the meds. Can you call her dr. and ask? If she does not take her thyroid med., she will end up in the hospital!
My mother loves ricotta cheese. I think putting the pill in a small amount of ricotta is better than not giving it to her at all. If I were there everyday, I would work on making sure she got her medication but since I'm not I have to depend on my dad, and there is never any certainty that he will give it to her. He tries to keep the peace, and in order not to ruffle any feathers, he doesn't push things if she flat out doesn't want to do it. Thanks for your input, Wannabe.