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

One of the really challenging aspects of both your LOs conditions as they affect the brain & so therefore can affect insight. Being in denial, not accepting a diagnosis or wishing to ignore it can be present as well.

I have two relatives that try to cover up small memory slips & other deficts (? pride, as we all have) but also vary as to actual insight to their (very high) care needs - low to near zero insight.

I think this mixture of lack of insight with wanting only family to help is really tough.

It can take some 'tough love' to set boundaries about how much you can realistically do - as one person. Especially when supervision needs increase.

Moving from the Doer to the Supervisor may become your role as time goes on. Getting more people in Team DH & Team Sis.

Moving may be needed for Sister, if not right now, down the track. It is extremely hard to run another household, especially if your own household also has very high needs. It can be done... with aides, a care co-ordinator, companion outings/driver etc.
But her staying home, with a team of people needs to be weighed against moving to where a team of people already exist (AL).

You probably have already kept both your Husband & Sister living at home for much much longer than without you! But keep assessing.

Pulling two other canoes behind your own can sink yours. Then you all go down.

This may or may not work for you but it is a suggestion. Long story very short, DH and I have ended up trying to care for multiple family members in very bad health while we too are both disabled. We looked into multi-family homes -- from duplex to four-plex with in home respite care. While the original upfront changes and cost seemed excessive, when factoring in the long term benefits, it made a lot of sense. Maybe that could be an alternative.

@MarleysMom, you mention two problems with your sister. I have one easy solution which may kill two birds with one stone. 

Problem 1. Your sister is unstable on her feet, and dangerously relies upon a cane. We all know a cane is NOT safe for an unstable person. 
Problem 2. Your sister is having some trouble being sociable, making friends, participating, etc…

Solution 1. To avoid instability, sister must refrain from relying upon a cane, and instead move to a walker. 

Why? If your sister falls badly using a cane, you and she will have a whole new set of insurmountable problems. My darling mother is in a similar unstable state. We bought her a cheap, lightweight four-wheeled rollator which has helped her move around safely for years, and is lightweight enough for her to lift into her own car trunk. We bought it at our local drugstore. 

Please note: Four wheeled rollators are much more stable than three wheeled ones, plus most four wheelers have a seat which is invaluable. Just plunk one’s rear down on the seat if tired, or to have a visit with others; plus one can store a purse, bottle of water and other necessities in the storage place under the seat. 

Sister will be more in command of her surroundings if she can grasp two handlebars and stably tear around her community, rather than slowly, carefully using a cane while holding herself up against a wall with her other hand. She will be perceived as less frail if she is standing upright, vigorously pushing her rollator around with confidence.

Solution 2. How will a rollator help your sister to socialize? Decorate it, changing decor with different seasons and holidays. This is what we did for mom’s rollator, and she gets admiring comments, smiles, waves, questions and cheerful conversations from people wherever we go. Everyone likes to have a reason to start a conversation (which is why people walking dogs make friends everywhere they go: everyone has a reason to start a conversation about the cute doggie, or personalized leash, or whatever). 

If your sister, with your fun help (and if your husband is in good form some days, he can decorate as can your children), changes her rollator decorations frequently, she will become memorable wherever she goes, people will automatically consider her friendly and approachable, and thus will have a consistent reason to talk to her. If she can’t talk due to aphasia, they’ll still be able to interact by pointing out their enjoyment of her decorated rollator. She will have plenty of socialization and interaction, I practically guarantee it. 

You may be thinking: decorations? What? Too hard, too expensive, forget it. You would be wrong to think that: We are lucky enough to have a party supply shop close by, so stop in frequently to buy cheap seasonal spangly bright decorations on bendable wire, here is just one example: 

Green shamrocks on 12 foot wire for $1.50, perfect for St. Patrick’s Day! 

https://tinyurl.com/Shamrocks-on-wire

We loop the decorations over and over in one piece from one handlebar area, across the seat’s cushioned back, ending at the other handlebar. Festive! Because such wire decor is bendable, you don’t even need to hook the ends to anything, the wire just molds closely to the rollator by itself. 

Valentine’s Day, St. Patrick’s Day, Easter, Spring, Fourth of July, Autumn, Halloween, Thanksgiving, Christmas, and more: we have spangly wire garlands for all seasons and holidays, mother is known for her decorated rollator, and people recognize her wherever we go. 

We even got little battery-operated twinkly Christmas lights to decorate her rollator, and they were the top hit!

If none of this sounds right for your sister, feel free to disregard.

Im sure sister needs more help than independence living. If she can’t cook, then how can she be trusted with meds? She needs higher level of care. You can’t get burnt out caring for both of them…you’re only one person…your husband may need memory care facility soon. Does he have neurologist? Is he taking meds to slow down decline? He don’t want anyone to know? People figure it out that he’s not all there. Doing it all yourself is going to kill you.

I’m caring for my 94 year old mother (95 soon) with dementia & believe me, it is exhausting..can’t imagine caring for another sickly person at same time. My Dad passed away in 1992 from blood cancer..& my mother & I have been joined at hip doing everything together since..Hugs 🤗

Mymomsthebest,

The place you mention sounds like a really nice place. It doesn't sound like the OP's sister is in such a place though.
It's terrible when a younger person is disabled and has to live with elderly people in a care facility. I get where the sister is coming from. I hope they will be able to find her the kind of place you're talking about.

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.

For starters, your sister is too young to be in a facility with elderly people. What a wretched existence. I'll speak plainly and say I'd rather be dead than live like that.
It doesn't have to be that way though. There are community types of housing for low-income, disabled people that start at ages 55 and up. Not nursing homes. Not AL facilities. Individual private apartments. Handicapped people have outside homecare help who comes in to do their housekeeping, meals, errands, hygiene assistance, etc... I've worked for at least a dozen or more young people in this kind of housing and living. A few lived in the same building. They were all on Medicaid and that paid for my service (I was agency-employed in those days). The people who needed more hours often cash-employed residents of the building who were able-bodied seniors to run small errands like pharmacy runs or groceries or cleaning if the person didn't get enough aide hours a week.
The rent was on a sliding-scale which means it went by a person's income.
Your sister might do very well in a 55 and over type of place. Please look into some for her and keep us posted.

Marley'smom, not much to add to the good advice given. Just know you are doing an amazing job. Don't forget to allow yourself to lean on others, and when you're not able to care for hubs by yourself apply for the help you need. Hugs to you.

Seems your loved ones need more help than you can provide.

Sister should phase to assisted living which can phase to total care when the time comes. Plan on seeing her maybe 2 days per week - once for "sister time" and once with your hubby. Help her to connect to groups in her community to socialize - you might have to bring her to a couple of gatherings until she feels more comfortable.

Hubby will eventually need more help than you can give alone. Start getting the children, friends, members of your faith community, and paid help into your home to visit/assist him. You can even ask for same helpers to "visit" (assist) your sister.

Reason you need others to help? You can get sick, injured, or hospitalized. Others need to be involved to take over when you are not available,.

Try to get them on Long-Term Medicaid. Gradually remove any additional funds in their accounts legitimately over a period of time, if you know what I mean, until they have just enough to pay their bills before applying. Once they are approved, they can qualify for part-time in-home care and eventually a nursing facility. Another thought: If either one of them own their home and have equity, they can do a reverse mortgage and use that money to hire in-home care.

I just went through the Alzheimer’s Care for my Pop. He had Service time and was approved for part-time in-home Care through the Veterans Administration. They came in Monday, Wednesday, and Friday for 4 hours each day. That was good for 4 months, but then more care was needed. They added 4 more hours Tuesday and Thursday. Me or my Sister came on weekends. Two weeks later he became bed ridden. After many falls. the hospital approved him for Hospice. For two weeks they came whenever called. Hospice we’re Angels! Then they had to keep him mostly sedated because he was very violent and out of his mind. My Mom would try and feed him in between when he would wake up. Last week he would eat no more then a few bites. He passed in his sleep two days ago. The past two years have been difficult. The past two months have been hell for my Mom. The past two weeks, we have watched during his end-of-life phase. You will need help. I recommend you try and start the process of getting them both approved for Medicaid.

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.

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

Call in other relatives. Things have changed, your sister may have to move nearer to other family. Your husband and kids have to come first. My mom was near me and flipped out, I had to put her in a small group home, that is wonderful, near me for my and my son's mental health.

Please take care of yourself and spend time with your children . Sometimes we are closer to a sibling then a spouse . Find time for you and enjoy your sister . No one knows how much longer we have time with people who are ill . My Mom had to move into a place for older people when she was 64 and made friends and lived there till 77 . Your in a tough spot dealing with 2 ill people . Find a group you enjoy or a activity that is just for you alone .

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.

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

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!

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.

Contact your local area on aging for resources - they have lots of information, can give you ideas of resources and how to pursue them.
Sis may not like the independent living place but it is the safest setting.
Nobody wants to live with a bunch of old people - even other old people!
Seeing yourself reflected in those around you, or anticipating what your future life will look/be like, can be very distressing.
If there is an adult day program in the area, see if she qualifies. Would give her a couple of days a week out of her apartment...may not love it either, but will give her social engagement.
My sense is that your first priority is to take care of your own health, as you have 4 adults who need you/depend on you, to various degrees. Having a connection to a therapist who understands your situation can give you a place where you get a chance to vent and be supported, more than an online forum.
You do have a full plate, and there is always the struggle between trying to plan carefully in advance and the reality that life is full of very unpredictable events.

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.

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.

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.

are the visits of 2 to 3 times a week weighing on you? It will be worse with sister in an apartment. How much realistically can you handle … I think you look at the long road of where all this leads….there your answer lies.

That is entirely up to you. You're the giver, they are the recipients.