Dueling dementias... How do I prioritize when both my husband and my sister need care?

As a married person, your spouse has the priority. You can't take care of both at the same time.

I think you are doing a good job. I am balancing 2 sick individuals as well, a 92 year old mom with dementia and multiple other issues and a 60 year old brother who has had strokes , aphasia, and currently in a skilled nursing facility. I try going to visit him each day or every other day while my mom still seems able to be alone for an hour at a time. It is not easy, emotionally exhausting, and I think it would be way to really hard to have your sister in an apartment. I'm hoping she gets some social interaction where she is, and I'm hoping you can get some help from your area agency on aging or maybe there are other social services that can give you some respite. Wishing you all the best as you navigate these very tough circumstances.

Hi OP. You're such a compassionate person and this must be tearing you up.

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.

I'd say your priorities are where they need to be. Your sister could make an effort to get to know some people in her place so she wouldn't lean on you for her entire social life. Besides, your husband isn't going to improve, and the day will come when you can't leave him alone to take her shopping. She'll have to make her own entertainment eventually.

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.

What about you? How are you doing?

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.

Marley’s Mom-
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.

Believe me, if you think you have it bad now, it will only get worse. I feel you need to not visit sister so often. Let her carve her place out making new friends. Dwindling down to once or twice a week at most because your husband will drain you unless you start looking now into several LF. That doesn't mean put him in one now. Prepare yourself. Don't feel obligated to keep him at home because you've got to take care of yourself first, so you can help to take care of others. Don't overload yourself because you'll eventually break down, then who will care of you?
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!

I think - unless you can cut yourself in half to care for each of them, you are facing an impossible task and I assure you, it will harm you and destroy you. Your sister has multiple issues and they will get worse. Yes, going into a facility is (to me) the worst outcome one could have but sometimes there is NO choice in the matter. YOU and YOUR family must come first. Unless you have a caretaker for her full time so you can tend to what else you need to do, she has to go into a facility where she is looked over and cared for. I see no other option. You cannot do it all and don't even try. If you ignore your family, you will come to regret it. Perhaps tell her you need a break - try it for a week or two (so you tell her, or maybe a month) and you'll get her back - but don't get her back. Sometimes when there is no cooperation, what can you do but that? Also talk with an eldercare attorney and have in place who is the power of attorney and what all else needs to be in place - don't wait. Do it now. You have a family who needs you. And do not feel guilty because you are human and can do just so much - so choose what is most important for now and the future.

MarleysMom: It is IMPERATIVE that you seek respite through any means possible, e.g. Visiting Angels, et al.

Welcome to my club. Been caring for my handicapped stepsister 24/7 for 22 years. Rescued her from depressing group home. My sister's in need of skilled nursing. Has G/J stomach tube & pump, aortic stenosis heart, congestive heart failure, deaf & partially blind. Uses oxygen machine for sleep, suction machine for aspiration issues, nebulizer for lungs. But she is not feeling ill, is ambulatory and happy. Recently out of nowhere my ex- husband appeared. No where to go and very ill. So I guess I'm it. I am now caring for him as well. It's a tedious job but worthy. I just do one day at a time. And one person at a time unless the other is in dire need. My female respite worker comes 4 days a week so I can get to my appts and "get the hell away time". She is very helpful. Ask hospice or medicare how to hire a respite worker. When I'm home and they're sleeping / resting I will grab some downtime. I watch a lot of movies, read and talk on the phone. Sometimes doze. Yup, the only way I can handle my load is one day at a time. And not to forget, I do a majority of my shopping on line. Amazon of course, Walmart, Wholefoods and local grocery stores for home delivery / pick up as well. And drive thru Pharmacies. Good luck and blessings for the hard work you are doing for the better good. Karma, the good that will come back to you.