MsAdventures Asked January 2016
Buying a new house. What should I look for for both my husband's well being and for mine as his caretaker?
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My husband has early/moderate-stage Alzheimer's. We are moving to GA from NJ to be close to our son. There are homes with 2 bedroom/2 bath on main and finished "terrace" levels with kitchen, bath, etc. I know that sounds like a lot to take care of. I am already having problems sleeping with him and have talked with the doctor about his constant moving. I have always been a "private" person and like having my own space. I paint and write. I know my life will change but if I can manage having someone in once in a while... Is it a viable idea to have separate living quarters? Not crazy about 55+. What should I look for? Yes, I do love my husband - but I'm scared of losing my life, too. Thank you for understanding and replies.
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With that in mind we will be using a frame around the toilet which maximises stability. You can have rails and indeed the full on drop down rails but in our experience the frame is the best option. That's part of the reason I said 2 bathrooms for you don't need that and your visitors won't either and they are cumbersome to remove and replace if you have a family gathering.
The more space you have (and by space I don't necessarily huge rooms but ones uncluttered by furniture) the easier motility will be for him and for you. I am assuming your husband has only Alzheimers. If he doesn't then plain walls, carpets and curtains might need to be in place. The best flooring for a bathroom is rubber - its softer than tiles and linoleum, non slip and water (or any other liquid!) proof. As you can probably tell I am sorting this right now for our new home. You need to have good lighting we will be using the daylight light bulbs because they offer the best lighting, but also some softer lighting for the evening when I want Mum to begin to calm down ready for bed.
An electric recliner is a good choice and will allow him to rest in situ without going to bed in the afternoon. If his hearing declines and it might you can get wireless TV sound enhancers.
If you are buying a new bed then I would try to get one with a steamable mattress just in case incontinence because problematic. I also have a commode for the nighttime so Mum doesn't have to get out of bed and try to walk anywhere. I am relatively strong but I can't lift her if she falls.
You will be fine me dear xxxx
In answer to questions, I am 72 and healthy and active. My husband is 76 and healthy except for the Alzheimer's. I am grateful to you all for these honest replies - even though they leave me a bit breathless and scared. I'm probably still in denial about how much he will change and need help. The money isn't too much of an issue, since it's so much cheaper in GA than NJ. My idea is to have a caregiver come and stay at the house when I need help and then have him go into Assisted Living when he is not aware, and can no longer feed, or toilet himself-Close so I can visit.
Back to the housing question: I've always worked, taken care of finances, cleaned, gardened, raised two boys... and my husband has worked and done all the home improvement labor. I've traveled the world, and some by myself. Now I'm starting to get tired! Just thinking about the future is overwhelming. I want to be close to our son and have neighbors who understand... but I don't want my husband's illness to define us. I hear 55+ is hard on the spirit as everyone airs their problems. I don't want to end up like that. So, I see, from what you say - it is a good idea to get the space I want - if I can afford it. Wide doorways (at what point will he need that?) one floor, new - so low maintenance - maybe I don't need a "in-law-suite"? I know I will need help and friends and prayers. And I have to realize that there will be good that come with this too. Like "meeting" you nice people who have offered help without knowing me. Hugs to all.
There are going to be books on 'universal design' and 'accessible housing' at the library for you.
Key points are: whole house at the single level, ability to alarm the doors and windows in case he tries to wander without your knowledge, a level threshold, NO STAIRS ANYWHERE, larger sized bedrooms, washer/dryer close to the rooms, and certainly separate bedrooms and bathroom if you wish and you can possibly afford it. Step-in larger sized shower. Possibly a guest room/suite for a stay-in caregiver in the future. There is a great deal you can choose to help you as you move forward into old age that will allow you to stay much longer in your own home. I picked a house for accessibility and i just love it.
Clearly the first consideration is the handicap accessibility which is important for all of us as we age. it's not so much "help I have fallen and can't get up" it is more likely to be "help I can't get up off the toilet" The advice of an occupational therapist would be good but if not get into the position where you think you may need help and from there see where bars would be most useful, it probably won't be where you first thought. Lets take the toilet. It is most useful to have a frame firmly attached to the toilet so there are arms on both sides to lever yourself up. An easy substitute is to remove the bucket from a commode and place that over the toilet to achieve the same result. A raised toilet seat is too unstable but if you are going to a remodel there are toilets that are higher. I would also recommend a bidet or at least a toilet seat bidet with hot and cold water. There are of course lots of other things needed in a bathroom. If you are unsure try using the handicapped stall in a public rest room to see how much room you really need. Naturally the other rooms in the home will need to be adapted to. It is very important to consider future needs as well as current ones.
I believe the need for ones own space is of paramount importance in any marriage. How this is arranged will depend on the needs of the individual and should be carefully thought out
Watch your own TV, read quietly, pursue your hobbies or just sit and nap.
A 55+ community may be an excellent place to start although in our case we enjoy the solitude Good luck with whatever you decide but one thing is for sure hubby's needs are going to change.
I live with Mum and I HAVE to have my own space - I would go nuts without (or even with!!) Minimum requirements for me (as we are moving) would be if I could have afforded it
a wet room or a big enough bathroom to get a wheelchair into and a hoist (if you are planning on caring for a long time) plus 1 more bathroom for me (selfish NOPE practical for him and you need my space time
2 bedrooms
2 living rooms
A good sized kitchen or a kitchen diner so that you have somewhere to eat together or for when family come over
A patio would be nice
A conservatory would be nice depending on where you live
A garden that is paved and has planters/flower pots is far easier to manage
Definitely all on one floor not perhaps for now but definitely for the future
Wide enough doors for wheelchairs to go through easily and no steps to obstruct access and egress
A third bedroom would be fab if you ever need overnight home carers, that you could also use as a studio in the meantime
If money is an issue and obviously it can be (I would love all this but our home will be much smaller)
Still would want two bathrooms
Definitely a bedroom and living room for him (Mum hates living and sleeping in the same room)
I am going to have a bedsitting room but the bed is a fold into the wall one so not visible during the day - you can also get some these days that tilt and turn into a table - they are not cheap but cheaper than buying that extra room for sure
And it is all on one floor. We will have a covered patio and a small garden (just grass)
If my wishes seem odd I live in UK and houses here are tiny in comparison to many I have seen in USA
Oh and obviously a kitchen
Don't be too quick to pass over the 55+ some are lovely but I must admit often smaller
Moving is very difficult for those with dementia and often a drastic decline follows a move. If this happens you need to understand that the level of care you have now, before the move, may become much, much more. Make sure you have a geriatric specialist and a neurologist lined up before the move, just in care meds need adjustment, or if there is some sort of emergency.
But, that is not what you are posting about.
I'm with Pam about being on one floor. With an accessible elevator it could be any floor, but there had better not be stairs within it.
Two bedrooms seems like a good idea. Even if hubby eventually moves out, it can be your work room, so you won't have to do your writing at the kitchen table or in your bedroom.
A member of my caregiver support group lived in a continuous care community. At first they lived together in an independent apartment. As her husband's dementia got worse he moved into some kind of long-term-care unit. She could walk through a skyway and spend part of each day with him. Sometimes, especially if their children were visiting, she would bring him back to their apartment for a day. If you can find and afford an arrangement like that I think that would ideal.
Babalou asks how long you expect to be able to care for him. Great question, but I don't know how anyone can possibly know that. I vowed to care for my husband as long as I was able, but that I would be realistic in assessing that. As it turned out, he died on hospice in our bedroom, after living with dementia for 10 years. My sister was able to care for our mother in sister's home for 14 months when we all agreed Mom needed a care center.
Your husband is early/mid stage. He could decline rapidly and need a care center within a year. He could plateau where he is, perhaps for years. It is possible (though statistically not likely) that with enough help you will be able to keep him with you to the end.
It is definitely important to keep living your own life! You'll be a better caregiver for it, too. It may not be at a level you were used to before, but don't lose it altogether!
I would read a lot about how the caregivers of those with dementia, who are often spouses and adult children, try to care for them in the home, especially a man who is being cared for by a female. If the patient becomes aggressive or resistant, it can be very difficult to deal with. And if if you are only dealing with assistance of bathing, dressing, medication, feeding, etc. It can still be exhausting.
Would you be in a position to pay to have multiple shifts of people come into the home to help with his care? In that case, the extra bedroom would be good to have a place for his care.
Since he is in the early to mid-stage, I'm not sure if I would proceed with a condo or opt for an Independent Living location that is close to an Assisted Living where he could eventually get assistance when the time comes. Maybe, some others around here, who have gone through this will chime in. I wish you both the best.