It seems over the past two weeks, my 90-yr-old mother with dementia has declined quickly. She spends two weeks at her own home with me there, then goes to my brother's house for two weeks. During the last stay with my brother, she walked into his and his wife's bedroom at 3am, talked to their pit bull who was sleeping in his crate on the floor and that woke my brother up. She was in her pajamas but had her tennis shoes on and some of her clothes were in the basket of her walker.
When he asked her what she was doing, she said she was ready to "go home." She said that there was "a lady at her house who stays with her sometimes that would be wondering where she was." That "lady" would be me. Mom does not know where she is when she is at his house, nor why she is there and asks him about it the entire time. Sometimes she thinks he is her brother (who died 2 years ago) and she never remembers his wife's name. She can not find her way around his house (although she did get to his bedroom!) and she has to be led to whatever room she is trying to find. She has been visiting his home for over 25 years!
When she came home from his house this past Sunday, she did not know she was in her own home and did not know where anything was. She "toured the house" from one end to the other, commenting along the way about what a nice house this was and how she loved all the decor. I try to get her to go to the bathroom about every 2 hours or so but, to this day, she does not know where it is. After she uses the bathroom, she always asks, "Where do I go now?" This is a house she has lived in for over 45 years. Her inability to find her way around was not the case before this last trip to my brother's house.
Since she has been home this time, she has not used my name once. I asked her if she knew who I was and she hesitated then said "my daughter." When I asked her what my name was, she did not know.
She has severe aphasia and is difficult to understand in the best of situations. It seems to have worsened in the past few weeks.
I guess what I am asking is if this rapid decline is "normal" for this awful disease? It seems I got a different mother back this time.
It is possible that as your mom's decline progresses, the movement between the 2 homes is more and more disorienting to her. If she also has increasing short-term memory loss, this too would add to the soup. Has your mom's dementia ever been identified as a specific type? This may give clarity to its trajectory. I'm so sorry that you must be on this difficult journey. Your mom is very lucky to have such hands-on TLC from her family. May you have peace in your heart as you care for her.
We do not have a diagnosis of dementia type. I do think it would be very helpful to know what we are dealing with more specifically. My guess would be it is vascular dementia as an MRI of her brain a few years ago showed evidence of several mini-strokes and resulting damage. Which would be the best type of doctor to determine what type of dementia? Neurologist? Her PCP just calls it "cognitive decline" and has left it up to the family (my brother and me) to decide when it gets worse.
She really does not seem to have any memory at all. She does not even ever mention my Dad, who passed away in 2013, and to whom she was married for 68 years. She does not talk about the past or ever mention anyone's name from past or present. Sadly, she does not even remember where her bathroom is from one minute to the next. I have pretty much removed the word "remember" from my vocabulary.
Again, thank you for your kind words. Peace? If only.
As it is a marked change, do report it to her doctor and discuss possible investigations. But don't gallop ahead with those: it's important to pause and think what useful information they might provide before you put your mother through them.
If it has been what I came to think of as a "big bit of sponge crumbling this time" you might also find it gradually settles down again, somewhat; but to repeat I do urge you to report it, because there could be something nastier on the way.
The to-ing and fro-ing must be quite difficult for all three (four inc SIL!) of you. Would there be any way of sticking to one venue and still sharing the care?
I am sure the living situation is difficult for her. Heck, it is difficult on ME! I leave my home and significant other for two weeks every month to stay at her home, where I thought she would be familiar with her surroundings. Unfortunately, my brother would NEVER consider coming to stay with Mom for two weeks. After all, he has a life to live and a lawn to maintain! (Sarcasm if you couldn't tell.) I know it will turn out that he will withdraw from the caregiving process completely leaving Mom's care entirely up to me.
I would truly like to know what type of dementia Mom has but there will be no big tests run or anything invasive done. I really appreciate your informative and thoughtful reply.
Some facilities are allowing new residents. Have you called the facility you are interested in? Have you checked their ratings on the Medicare site or the department of human services site or talked with the ombudsmen at the Area Agency on Aging?
A UTI is possible and will cause major decline, rapidly. Maybe she has had more strokes? Is her doctor a geriatrician? Start with calling the doc, many appointments can be held virtually, no need to leave home.
Concentrate on getting mom into a stable and unchanging residential placement. Or think about having mom stay put and you and bro swapping home for two weeks at a time. Though even the change of person caring for her could cause confusion, and it sounds like that does as well.
I am fairly certain that she has a UTI as I tested today with a home kit and it turned the same color as the Positive indicator. I have notified her PCP (who is not a geriatrician) so maybe he will call in some antibiotics for her before Friday. I also would not be a bit surprised if she has had more mini-strokes. Thank you so much for your helpful reply.
My dad would never have put Mom in a MC, because he felt it was his duty to care for her. He died first, though, and my mother's health improved significantly since I moved her to MC. One person cannot do the work of a round-the-clock staff, no matter how much you hope you can.
Also, my mom has vascular dementia, too, and stopped talking about my dad within a month after his death in 2018. They were married 66 years, and her heart was broken. Don't blame your mom -- it might be the dementia, and it might just be easier on her heart not to talk about him.
I think my mom's memory is gone. She does not talk about the present, the past or the future. As a matter of fact, she does not talk much at all because of the aphasia.
I do the best I can. I am certainly not trained to be a caregiver. Some days are better than others but I see big challenges coming around the corner. I am 71 and did not plan on my "golden" years being spent this way. But, you do what has to be done. I find myself wishing that my parents had had lots more kids! Thanks for your reply.
There's no arguing with dementia; there's no rhyme or reason to it, and there's no coming back to a normal place from it. Sometimes I think it's harder on the family members than it is on the person suffering from the dementia! They are usually unaware of having an issue; it is WE who have to learn how to cope with them forgetting who we are, our names, and every other memory that was held dear to them during their lives. I hate dementia with every ounce of my being, and I have zero regrets that I placed my own folks in Assisted Living back in 2014. My dad passed in 2015 and my 93.5 y/o mother still lives in the ALF, but in the Memory Care wing nowadays. She's well cared for over there, and if she's up all night asking for various things, the night staff has no problem with it. She can't leave the grounds and get lost, she gets 3 hot meals a day and 3 snacks, and as much entertainment and activity as they're able to provide these days with the virus being an issue. It's truly a win-win situation for EVERYONE. The elder is NOT the only one to take into consideration here. Everybody matters, and everyone deserves a good quality of life; try to remember that moving forward.
Wishing you the best of luck.
https://www.agingcare.com/articles/caregiving-tips-teepa-snow-180395.htm
So yes. I feel for you. It would be a fascinating study of the human brain if i weren't living it. Take care of yourself.
Your wife is lucky to have you.
Best wishes to you and your Mom.
I am in the exact same situation that you are in. I live with my mother (81 years old) and am her caretaker. She was just a little forgetful for the past year but in the recent months since I have been working from home due to the pandemic she has had an extremely rapid decline. Like your situation, she thinks I am someone else. She has called me the double or thinks I am her mother. There are times where she is perfectly fine and knows who I am and I get encouraged and by the next day it starts all over again.
We have lived in the same house for 47 years and she does not remember where the bathroom is and will ask me to take her home when she is home. The other day she was insisting that we stayed at a house in another town when we were in fact in our own home that night. She talks to me as if I were a stranger and asked me if I remember her ex husband, who is my father. She also asked me if I know her daughter's friend (my friend).
It is extremely scary because the neurologist cannot do anything for her. What she is going through is vascular dementia which is more rapid than Alzheimer's.
I am extremely scared since I will need to go back to work soon. I know how you feel and I have been speaking with a psychologist because it is extremely hard for me to see her decline like this and she has also gotten verbally abusive. I realized I needed help in learning how to deal with someone in her condition.
I wish I could tell you it would get better but it doesn't. The most important thing is for you to take care of yourself so you will be there for your mom.
i am a good friend she says. I will tell her it’s time for bed she says she has none but she is sitting right next to it. Her memories are when she was a child up to her early 20’s. I can walk out of her room and return 5 minutes later and I am a different person. She has lived with me 30 years. So yes it can be rapid.
I would either not move her and hire caregivers to help out or if possible you and your brother switch houses for the 2 week respite.
It is obvious: we have to come up with a new solution for Mom's care.
After the shot, she actually seemed more aware of her surroundings. But, then night came! She again was up and down all night----once to go to the bathroom, once to try to "sell" her pillow, and other times, just because. She is awake most of the night and yelling, moaning, groaning, coughing and sometimes having a conversation. I hear her on the baby monitor I have by my bed. I don't know how to get her days vs nights straightened out. I woke her this morning to take her antibiotic and change her undergarment, then she went back to bed. She is still there at 11am.
Hopefully, after this course of antibiotics, she will be better? I think she has had a UTI for months. We have a virtual visit with her PCP scheduled for later this afternoon. It is a phone visit and not computer. It will be useless for Mom. I plan to ask about getting something to help her sleep at night.
You make a good point about the lockdown due to the pandemic. This is one reason I am putting off placement. I can't imagine not being able to visit, although she may not know who I am. I absolutely HATE this disease.
Blessings to you and your mother.
Mom definitely needs 24-hour care. Perhaps I can get a caregiver to come in from 10pm to 6am so at least I could get some sleep. Due to her being awake at night since she has been home this time, I have not slept.
For the first time, I am actually considering the idea of placing her. This whole thing is so hard!