My 58-year-old husband has younger onset Alzheimer's. He is starting to display stage 5 symptoms more consistently but is very good at showtiming for others. It feels like this is going fast, especially since there were definite signs since 2014 (when he was fired from his job and has not worked since). He does not talk with anyone else about his Alzheimer's and doesn't want anyone to know (they do). He doesn't drive anymore.
My 64-year-old sister has an astrocytoma brain tumor (20 years) and has aphasia that is getting more severe, making it hard to understand what she is saying/thinking. I also think there is dementia as well based on her MMSE score. The tumor has also caused issues with balance so she walks with a cane but should have a walker as she still falls (I got her the cane, she refuses the walker as she is not old enough to need it). She is at the point where she has difficulty cleaning a home and cannot cook for herself, but can care for herself, i.e. medications, selfcare, washing clothes. She does not drive and does not acknowledge that she has any major issues.
To spend time with my husband I retired in 2021 at age 58. Then my sister fell for a series of scams and lost a bunch of money. I was able to convince her to move to my state and into independent living at a nearby facility. However, she has no friends or family in our city but me. She tells me she is too young to live in a community with people in their 70s-90s. My husband and sister get along but spending a week together is about 4 days too much.
I am a planner/organizer for what needs to be done. Now I see that these two people I love starting to compete for my time (and with each other). I feel torn, knowing my husband is my priority but then my sister moved to be closer to me. I have planned to do things with both when possible--when walking is not involved. I am seeing my sister 2-3 times a week, visiting or taking her shopping and other activities as needed. I bring her to our house for family events. (My husband and I have two college-aged children who are busy with their education/work/personal lives. They do help if asked.)
I am feeling guilty about asking my sister to be in a facility, but the other option is taking care of her in an apartment and my husband at home which I know is just too much for me. I know that at a facility she will have support. However, knowing and feeling are definitely different things.
I am curious to know if anyone else has had a similar experience and what they have done to work with each person or the situation and what I might expect in the future. Thank you for reading/responding.
The balance is hard...I think two hours is the most I can leave my husband alone. Soon, he will not be left alone at all, and then he will go with me when as possible.
You have found some balance as well. My wish is it continues for you and you stay well.
However, your first obligation is to your husband of many years, whom you have had children with, whom you still love. Your assets further are comingled.
That doesn't mean shunning your sister, but it will mean seeing her less as your husband does come first.
Many if not most AL residents have a sense of pride in not being as old or as bad off as their peers, but that's not the criteria. The criteria is that if you need more assistance, you need AL. Your hands are full already. Don't feel bad.
There was a 48-year-old man in my mother's facility, so your sister isn't too young to live in one. He helped out around the place by setting tables, and doing other small tasks as he was able. Perhaps your sister's place could enlist her help with the older people.
Also, get rid of the cane. They aren't for balance issues, and when people start to fall with a cane, they lean on the cane, then pivot around it and fall awkwardly. A cane should really only be used inside when you can use a wall for balance with your other hand.
After your comment, I am concerned about the cane. She does use the wall with the cane when possible, but I see what you mean. I will talk with her doctor about other options...possibly the three-wheel rollator mentioned by another commentor.
Encouraging your sister to move to a facility was the BEST possible move to accommodate her needs. Tell her to take a look at the three wheel rollator options. Game
changer excellent mobility and doesn’t “look” like a walker.
I will check into the three-wheel rollator...that might do it! She loses balance just walking but I know it is not the best solution.
As I replied to BC , there is much positive to IL and also AL facilities..the issue is being able to afford it and finding a good place. I’d actually say , you could consider this for your husband and perhaps even yourself . If you lived there it would make spending time with both people less of a hassle. There would be places you could have your husband and not have to worry about him. I am not sure the exact situation with your children so don’t know if they live at home or merely visit and plan to not return to live with you. Living there also makes a shift to AL or even SNF easier. I met a man who lived at an IL area and as his wife became more ill with dementia , he was able to have caregivers both on a schedule and when his wife fell to help him immediately. When she needed complete care she moved to The SNF part but he was able to come and visit her anytime , even sleep in her room if wanted . He also frequently took her over to the IL dining rooms and wheeled her around the grounds.
As for now — explore the future , perhaps with assistance of a social worker or elderly law expert. If your sister is still pretty oriented , with just slight missteps , this may be the last memories you can make. So, go to concerts or whatever you both enjoy — perhaps use it as a respite from husbands care. If I am reading your question correctly, he is in stage where dementia has progressed markedly. Thus he may not really realize or remember when you are gone. You may need to have either facility or home care to help especially if he becomes agitated, combative or otherwise difficult for you to manage. Also, if your children are still at home, some things can be difficult to deal with even though they know it isn’t really him but an impaired brain driving his actions. Having him strike or yell at them or their mother is unforgettable and may cloud their memories forever. So sometimes , If you think of what he would have wanted when he was still himself , it can be easier . Also, there are often adult daycares that he might still be up to , although it seems as if those are not for sister as yet. She should explore things in her facility , but if not , as she is still able - explore community offerings as well. Book clubs, women’s groups, churches, etc. A former friend - much older than us, volunteered for a humane society and belonged to a YMCA well past a stroke despite physical issues. She also had a “gentleman friend” and enjoyed that time with him. She chose to sell her home and move to IL in a facility run by a religious group. She bought into their continuous care also. I think she had actually wished she had moved there when she was more physically able so she could have made more friends before becoming more restricted. To me , this area of that campus often seemed like a college dorm situation - with the same social interactions including cliques, jealousies and gossip.
I agree with the counseling advice— you need someone to talk to and give you an outlet.
My husband has not developed any negative tendencies but a sharing attitude. For example, he will want me to have part of his meal even if I have my own or he will carry the laundry basket the last 5 feet to help me out. At least he stays in that mode as long as I remain calm, otherwise he gives me the silent treatment.
I am hopeful that the facility activities will bring more out for my sister, and I am starting to see some interest. I tried for years to get her to do other things, but she has been resistant to most suggestions. I think limiting my interactions to 1-2 visits a week will help. She really likes the fact that there is a library with puzzles as well. I am hoping that she will visit and meet more people.
of course your two shadows can't begin to think there is something wrong with them. To much pride can be a horrible situation at times. You've GOT to come FIRST!
Good luck and take care of yourself. Hugs to you!