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.
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.
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.
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 will have to see about a therapist. An outlet for mental health (venting) may be the thing I need. Thank you.
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.
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 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.
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,.
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.
Another benefit can be that sometimes you “buy in” and then can receive whatever you need , moving from IL to AL and to skilled or memory care as needed.
In fact, I recently read an article about even much younger people moving to these communities , often when they have family residing there. The one woman I saw interviewed said that hers was safe , with security on site. She enjoyed the facilities as far as her apartment , dining and recreation and had also enjoyed some trips. She did not opt for any meal plan since she mostly cooked for herself but she also lauded her neighbors who often brought her cooked food and baked goods. She said they felt a connection to her as a substitute for family of far away or unable to visit .
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.
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.
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 🤗
My husband has a neurologist and has been on Aricept since his diagnosis in 2020. He just denies there is a real problem for 95% of the time.
My best to you and your mom on this tough journey. I am glad you have a great relationship!
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.
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.