My mom has just received a dementia diagnosis. Goes for an MRI on Sunday to learn more about type and severity. This has been coming for a couple/few years. My guess is mild to moderate severity, probably ALZ. She's still OK alone and can navigate her life in our house pretty well. But has TONS of issues too. The conversations are often verrrry strange, not surprisingly.
She is also in PT for a outer hip/glute pain and trouble walking. PT is coming to the house twice a week and an aide another 2 days to help her do her exercises since she doesn't do them on her own. The original evaluation said that she has weak muscles and needs to do PT to strengthen them to get rid of the pain. That she'd have to work her way out of the pain. Makes sense to me. But mom does not like to do any work. She would love to be waited on, etc. Not happening in my house.
But OMG the complaining!!! Wants to know when all these people are going to stop coming to the house. I tell her, well you have weak muscles and pain so you need PT so not for quite awhile. She does very little during the day. Sometimes a little light reading. Sometimes folding laundry. Mostly watching TV and moving her papers around. So why is it such an imposition for her to spend a half hour during PT???
Then today she told me that she wants to stop all of it after our vacation 3 weeks from now. I told her she'd end up in a wheelchair and is that OK with her. At this point she just shuts down. I'm so frustrated that she does not want to do anything to help her situation.
Complains about incontinence issues. But refused to go to two appointments in the past. It's gotten bad enough that she's asked to go and I booked a appt and she IS going, if I have to drag her to the car.
Complains about being tired all the time. Yup. Diagnosed with severe sleep apnea. So she doesn't get good sleep, ever. But could not or would not use the CPAP. I helped her a lot and got her set up every night but most nights she'd take the mask off after a short amount of time and not be able to explain why the next morning. I just tell her that she has severe sleep apnea and you're going to be tired every day.
I know with dementia that these things are magnified. But she was like this before. She always thought that waiting to see how she felt tomorrow was a good plan. I am soo not like that and it just frustrates the heck out of me. She just let old wash over her and did not fight it. Now I'm feeling very much like I'm not doing more for you since you refuse to do anything to help yourself. Don't do PT and can do less? I don't want to do more to fill in the gap. So, I'll be hiring someone (with her money, of course) to do the things that she can no longer do. First hired a cleaning lady since she couldn't keep her room and bathroom clean or change her sheets. Now hiring an aide to help her do exercises that she won't do alone. I'm sure there will be more soon.
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I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.” For people to understand that reality and context as perceived and experienced by a person with dementia, is altered by the dementia; and, that their reality and context is continuously changing as the dementia progresses, requires learning and an attitude shift; it is not ‘common sense.’
Here is a list of useful tips from her e-book I found to be excellent:
The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently
Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by- play”
· Be aware of your body language and use it to communicate relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending themselves with what we call “aggression”
· If they become distressed, stop immediately and allow them time to calm down – don’t try to restart the activity right away
You need to change your behaviour to adapt to the dementia because the person with the disease cannot.
Another good book is Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's, by Diana Friel McGowin. Learn all you can about AD/dementia b/c knowledge is power!
Also plan for the future when you may no longer be able to handle mom at home & Memory Care may be your best bet.
GOOD LUCK!
I do know of one really good MC in the area. My friend's dad was there and I helped her move him in and then out (when he ran out money). In your experience, do you think it would be reasonable for the progression to be from being at home with some aides and then go into memory care? And then I guess when her money runs out, she'd have to transition to a medicaid nursing home?
This reminds me that she is now older than both her parents were when they passed, 6 years older than my dad, and my dad's parents as well. Her mom's siblings lived to be a bit older than she is now, all with dementia as well. I always assumed my parents wouldn't live too long given their parents all dying in their mid 70s and that they didn't take good care of themselves. I am hoping to break the trend by taking as good care of myself as I know how. We'll see how that pans out! LOL
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We used to have many posts where people complained that elders were living too long. How Doctors were extending their lives past the point they had any quality of life. The US has an average life expectancy of about 78 I think it is. Your mom at 75 would be near that. Perhaps she is tired.
The PT before a vacation sounds good. Hopefully she will have more energy and both of you will enjoy the break in routine. I think you are doing good to keep her active so she can have the best life possible. It is stressful watching our loved ones decline regardless of their age. Recently there was a post re an 87 yr old who didn’t want to go to the doctor for BP meds. Adult children as a group seem confused about what they want. Extend the life, don’t extend the life. Maybe againx100 you might find some benefit from reading “Being Mortal, Medicine and What Matters in the End” by Atul Gawande. There comes a point where a person might be ready to relax into old age and not feel compelled to fight it without it being called depression. How about reality? Since you know your mom has dementia, it might be a good time for you and mom to discuss Atul’s five questions. Or it may be later than you think.
Here is a link to an interview where he is discussing the questions he feels every elder deserves to discuss with their doctors and family.
https://www.nextavenue.org/atul-gawandes-5-questions-ask-lifes-end/
Your mom is lucky to have you.
Once a complainer always a complainer. They are called Debbie Downers. I had a friend like this. When she complained, I'd suggest a solution. Always a reason why the solution wouldn't work. One was an application for the Senior bus. She was under the age limit but disabled which they excepted. When she was complaining she couldn't find a ride, I asked what happen to the bus? She said she was turned down. I doubt that, she just never applied. Now if I had gotten her the application, had her fill it out, take it back and follow up on the progress she probably would have liked that. Sorry, my new slogan is "I am here to help people find the way, I am not here to be the way"
Her bedroom was getting problematic. She has a dustbuster and used it sometimes. Swiffer sweeper too. But she eats in her room and kept getting ants. YUCK. And couldn't change her sheets - well, technically could but would take a full day to do it. And her bathroom?? Let's just say I NEVER use it!!! So, a cleaning lady is a necessity!
LOL she is totally a Debbie Downer! I'll share that with my sister - she'll get a kick out of it too. Wow, I am stuck in the same thing you describe about your friend. I am always offering solutions to mom's complaints. But does she want to do any of them? Nope. And offers ridiculous excuses. Maddening. OK, she has dementia but it still drives me batty and has been going on for years.
After reading so much on this forum, I've come to understand that sacrificing one's sanity is not healthy for anyone; especially the one who forfeits her happiness trying to make someone else happy. Old age, physical pain/limitations and the dreary darkness of mental illness is NOT a happy place for anyone.
I wish I had quit trying. And that’s my advise to you. Quit trying, she won’t and you can’t do it for her.
Please read my response MJ1929.. I felt like all we ever did was argue and to what consequence. My mom went from independently living in a mobile home , to AL , then to a MC. She does nothing to help herself. But still asked the dr for PT 4 months ago.. I tell her she will end up in a nursing home, she does not care, and is lazy.
I know your frustration
Not for Sissies this whole thing of loss of one thing after another, mobility, joints, continence, mind. And when we have the mind being uncooperative as well?
I think Againx100 is moving into againx1000, and battling all of this? Well, think back to our parents battling US when we were in our teens. It just won't work, and the added frustration for everyone involved will be dreadful.
I too, can imagine the frustration. But not everything can be fixed.
I am kind of concerned about one single statement here and that is that the OP believes that all this can be "easily improved". I think there may be some magical thinking in that belief.
Healthier but miserable and feeling driven and disapproved of is not how you want your mother to be.
Those aides who you've hired to encourage her exercises, how are they getting on with her? The coaxing/threatening/encouraging bit is their job, and that's what she's paying for (excellent decision on your part) - are they are doing it, do you think? If so, you should, if you look surreptitiously and discreetly without your mother's noticing you, begin to see the green shoots of returning motivation. Any sign?
The aides are getting along well with her. She likes them. She doesn't like doing her exercises but likes them. She's kind of a people pleaser and I think she likes the extra attention. If green shoots of motivation appear, it would be a miracle. She has never had any drive to take care of herself.
Sorry your mom forgot how to walk. That is pretty advanced and is just incredibly sad. I will not be able to handle that level, no doubt. As her condition declines, I expect to hire more in-home help until that gets too expensive and/or she just needs to much care and then transition to living in a facility appropriate for her issues at that time. I need to get in an app to the SNF down the street from us, a few miles.
It definitely gets worse over time. It's degenerative and untreatable. So cruel.
I have thought about telling her that if she's not going to go to the doctor and do something to fix whatever issue she's telling me about, then please don't bother telling me about it. Not sure if it would work and if it would shut down too much of her ability to tell me what's going on in case it's something new that actually needs to be addressed.