Do I move to assisted living with my husband even though I am fully independent?

With his problems AL is not the answer, he needs more care then what most offer.

My decision would be based on your plans after his passing. Do you have a place to go if you decide not to stay?

Good Morning Atlraptor,

In response to your cry for help...first things first, have your wife assessed by her Primary Care Physician (PCP) and also try to find a Geriatrician and/or Geriatric Neuro Psy doctor.

The PCP will write the order for "in-house services". I would deal with the immediate first--nurse, physical therapy, blood lab tech, occupational therapy, speech therapy, CNA, if possible cleaning lady and any Church people that can visit routinely once a week.

The above mentioned should be covered by your health insurance. If you don't belong to a Church find one and formally register and ask that they visit weekly, etc.

Also, are you cooking? How is your nutrition? Is your wife and yourself getting the proper vitamins and balanced diet?

Have everything delivered--groceries, medications. If you're not tech savvy find some 20-something to set you up in the family and make yourself familiar with the "portal". Each doctor has one and you can find out your wife's test results right away.

This will have to be done in stages before you officially decide to make a move. You have to have an actual diagnosis--is it your wife's executive functioning skills, peripheral vision, gait/balance issues. When was the last time your wife had a panel of bloodwork?

Good quality shoes, I recommend SAS Mary Jane denims shoes you can buy online or similar. If your wife can go outside an "Upwalker Lite" is highly recommended. You can ask the doctor to write a prescription "before" you buy it and hopefully your insurance will reimburse you.

Prior to our big move, I had mother go to one morning a week day care program. Provided breakfast, lunch and had physical therapy and speech therapy (again the therapies are covered through your insurance but NOT the day care program) for her on site. They also had a nurse, I would request Mom's vitals be taken. Some provide transportation to and from but I drove my mother because she always has to go to the bathroom. I in turn would get the oil changed, my teeth cleaned, etc. I couldn't count on my siblings to show up for coverage so I had to take matters into my own hands.

If $$$ is an issue there some programs that you can apply for. Don't be too proud to ask.

A button through insurance with a GPS tracker on it is good in case your wife should wander. These are all things you can do this week by phone or on the internet.

You have to have a "diagnosis" before you can proceed to look around for placement if it comes to that.

If you are a Veteran (during "time of War") there may be some Aid & Attendance programs available.

Usually with insurance and prescription, the last quarter of the year is the culprit. October, November, December Some people hit the donut hole and they have exhausted their limit for prescriptions. Now I order mail-order (90) day for mother; her basic meds.

But, I also have the local neighborhood pharmacy that delivers in case of a UTI or other issue that requires a one-bout script. UTI's (urinary track infections) are common if you don't drink enough water, sit too long or wipe yourself good.

I give my mother a shot of cranberry juice each morning. White Hanes cotton underwear that I bought on Amazon. My lifeline Amazon, saves a lot of running around.

The Durable Medical Equipment is part of your health insurance. You can get railing for the bath tub, a shower chair, nozzle spray and most importantly railings around the toilet but NOT the booster sit because you can't wipe yourself the right way and that can cause UTI's.

For the record, years ago when my family was saying "what's wrong with Mom" I would walk around the neighborhood circle crying. I, too, did not know where to begin. It seemed overwhelming. But, present day I have been in the trenches for many years. It's only been lately that I feel I have enough experience to participate with support. At first, when I was a newbie to this, I was glued to the forum every Saturday.

Just remember assisted living is a non medical home. They are there to assist with his daily living skills not his medical needs if any. As for yourself I agree with lots of really great comments made today. You need to think of yourself first. Or maybe you are thinking of yourself. If that's the case I say go for it. There are alot of folks out there that can afford 5/6grand month. I'm pretty sure LTCins will not pay for you yet. Don't forget a place for mom is not the only place to find a facility as they have a smaller list. Each facility has an ombudsman poster if you have issues or concerns and they have ALL the facilities and their ratings and it's a free service by your state. Wishing you the best.

let the professionals handle the sick person - if you go it could be heartbreaking . Your life and freedom matter .

Please do your research before deciding to "live together." Parkinson's is progressive and the later stages are very difficult for the person with the disease - and in many cases harder for their loved ones.

Most facilities ask that the family allow for at least a 1-2 week adjustment period for the new resident, during which visitation is allowed, but they ask it be brief to let the staff and resident get acquainted and the new resident get familiar with a new routine.
Many facilities do allow occasional 'overnight' visitors with prior notice...depending on your LO's situation, this may or may not be beneficial to them--or you, but it's something worth investigating.
In any case, YOU need to care for yourself first. Think of it like the oxygen bags in an airplane--you have to put yours on first before you can help anyone else. Your absolutely NEED that down time/time away to use your oxygen mask before you're of any use to anyone else, especially your LO.

I am a daughter helping my parents who are dealing with this decision right now. They have been married for 57 years. He is 91 and independent she is 86 and dependent on care givers and my dad (and me). She has mild cognitive impairment and not a lot of mobility. They currently live in independent living with care givers that come 17 hours a day but that is very expensive. We have been looking at assisted living facilities that also have independent living and memory care. With the help of A Place for Mom we found a place that has it all and they can stay together as that is what they want. I see others that have placed their loved one in AI but visit every day which takes a lot out of them too. I don't know the answer. These are tough times but I think there is a lot of peace of mind for ensuring the person you love gets the care they need whether you move with them or not.

Parkinson itself is devastating disease as we see changes and sometimes improvements only to see going downhill even quicker than before. And you see motor skills deteriorating as well as cognitive. Freezing of gait is the temporary, involuntary inability to move as brain does not get those signals to keep moving, or as neurologist explained meds are not as effective. And nobody knows what next, I only know it is not going to get better.
And my husband does not have dementia so I don’t know all of it.
However, after few visits in AL I can tell you honestly I would not go to live there.
And as sad as it is and unpredictable as well, but if he reaches advanced stage AL will not be the best place for him.

It sounds to me as if your DH really isn’t AL material. Perhaps just on the edge or it. He is only going to cope if he has one-on-one care (you?) much of the time. Before you sell up and try to get comfortable in AL yourself, perhaps you should look ahead as far as you can. If DH needs Memory Care, would you be comfortable there yourself? How could it work if he needs NH care? If you are 'not sure' you could live in AL, it's only going to get more difficult.

How would you feel if you had to start your ‘new life’ after you have closed down the current arrangements? It might be worth considering renting out your current home for a year or two, if you want to try the joint AL, so that you have a fall-back plan. The rent might help to pay the AL bill.

As Ireland beautifully describes below, seek out a facility with various levels: independent apt for you with assisted living, etc. available when and if needed for your husband. They exist and many are like little towns in themselves: good food, activities, pets allowed on ground floors, things like that. Otherwise, locate yourself as close to your husband's facility and visit at your comfort level, for mutual support and companionship, and to ensure he is getting proper care. Do not move in to his AL if you are still active and independent.

Good Morning,

I live at an Independent Living in the South...relocated from the Northeast too expensive. Been left with the responsibility of caring for a mother, 3 siblings too busy, every family is the same.

There are different tiers here...Independent Living, Assisted Living, Memory Care, Respite, Physical Therapy, skilled care on the premises.

Call button and 24/7 coverage on duty for security. Everything usually comes down to $$$. A few scenarios, you could "both find an Independent" place with other tiers. Bring in custodial care, etc. to care for your husband.

I was starting to get worn out. Mom was a rather young widow (56, now 87) and I needed a team of people since her fall in late 2023. The wonderful thing now is the doctor comes to the apartment, the blood tech and believe it or not the x-ray machine comes right into the apartment.

Mother has had pneumonia, a tooth extraction and need a script for a fall for lower back pain. Most of this was done in house. This is the cheapest way if there is such a word to get out of of this. We are not the Kennedy's with the private nurse for Rose, but just average people who had to leave one State and travel to another for wider options.

I work remotely, and am able to dine in the dining room. I am the add-on person. I pay my way too. For us, this works. Every State is different but the Southern part of the nation is geared toward a Senior population.

When mother passes, I will vacate the apartment and move to a 55+ Community, at another place. There are options. You can do everything online and do a virtual tour and call "A Place for Mom".

I recommend finding a place without a buy-in; basically no large lump sum down payment. Also, (2) squares a day are needed to avoid grocery shopping.

Sign up for House Calls MD (for the both of you) and have everyone come to you.

This is unusual situation but it works for us. We had to do something. As the your loved one's health declines you have to be ready for your next move.

In all honestly, the AL are really real estate and everything is a la carte. The employees that work here where I live do not have their mother's living in the AL but the Independent Living and they bring services in. The AL charges you for everything and they are all short-staffed, underpaid, and overworked; especially on the night shift.

The call buttons usually take time for a response since many people are calling at the same time. These facilities are big investments. There are layers--hedge fund people/owners who want their high return, management, employees.

Check out who owns the place, how many places they own and speak with the residents. Make sure you understand what you are signing up for. I know it's hard but we are happy with our move and I needed the help because you are going up against old age.

I gave away a lot of my furniture, clothing, dishes, etc. because you have a small living quarters. I asked for the smallest unit available since when mother passes I have to swing the rent for 60 days which is required upon move out.

Don't be talked into anything you don't understand and doesn't seem clear. Have someone else accompany you to get their input as well.

You are in my prayers...

No! Be his advocate from outside his AL and visit often. You will be a much better advocate if you are rested and cheerful rather than exhausted by living with lots of disabled people whose issues may cause noise in the night, pacing around, bumping into walls with their walkers and all the other things they do, like taking things that don't belong to them and hiding them here and there. I'm not being disrespectful to the elderly sick and disabled, but that is what they do.

I visited such a care facility yesterday for lunch. I spoke with several residents, encouraged them in their choice of dessert, and hugged a couple of sweet little ladies. I enjoyed seeing their smiles, but I guarantee you that their struggles could make a normal person feel sad if surrounded by it 24/7 as a living situation. I was glad to be able to walk out under my own power and leave after the visit.

All that said, it was a very nice facility, and I would choose it for any relative if any of them needed that level of care.

This is a personal choice for you.
My story follows:
After 2 years of being sole caregiver for my brain injured DH, I realized that he was no longer improving and I was not able to give him the help he needed.
I found a beautiful AL facility for him originally just for a month of respite care for me. I felt guilty but knew we both needed that change.
11 months later, he’s content there and surrounded by wonderful caregivers who are trained to help him with his every need. The nurses are in contact with his doctors and pharmacy and me.
I hadn’t realized how exhausted I’d become, no time away from home or my 24/7 worries about him for 2 years.
My experience has been very positive, living separately after 57 years together. It’s better for me and for him and my visits with him are positive experiences rather than worrisome ones.
Good luck with your decision. I’m sure you’ll find the right one.

No, I wouldn't if I could manage for some time on my own.
Firstly you will remain the primary caregiver in the eyes of hubby and of the facility.
Secondly you will be paying an enormous amount for care you don't need at present.
Thirdly, this is a decision you can make when and if you need to.

That's my thinking, but the final decision for you will be your own. I can't know how close you feel you are to needing this type of care yourself.
I wish you the best.

see www.aldermanoaks.com which has both Assisted and Independent-probably in your area too

If you stay at home while DH goes into AL, you will have a choice of spending a lot of your time visiting him, or working quite hard at making a ‘new life’ for yourself. I’ve just had 3 months on my own, with my DH selling the farm in another state. Adjusting to being on my own was difficult. I’m 77, with health problems. I felt I was getting better at it, making new friends etc, just before it ended.

I’d suggest that you consider your age, your health, and how you feel about ‘trying to have a normal life’ after all that caregiving. If you think that your life will still revolve around DH, why not go with him? If not, stay living separately, visit as much as you want, and take a break for yourself. You don't know how well he will adjust until you try it for a good while.

I know a lady at my mother's AL/MC.

Her husband needed AL, but she did not. They moved into the AL together.

When he needed MC, she stayed in the AL.

He passed away. She continues to stay at the AL, and even volunteers to greet new families. She has a name tag and everything!

She's very happy.

Thats up to you. In Moms AL there were couples. One lady stayed even after her husband passed. She enjoyed the people, outings and activities.

You can have a social life out of the AL and know that DH is being watched. With my Mom, they liked keeping her out in the common area. Many people in ALs have cars. My SILs parents went into a high end one. He had ALZ. She loved it. They had lots of things to do. She volunteered outside of the AL.

Beatty,
I really like your post.
Especially, paragraph about AL.
If OP moves with husband to AL and he wants her to provide most care as it happens for many reasons, i.e being stubborn and refusing others to help, what is the point?
As she stated he may not be able to adjust without her.
Also, lets be realistic what if you are able to live together 2-3 years and he needs MC, would you stay in AL?
Perhaps consider or ask neurologist about worsening Parkinson’s. Is he reaching advanced stage of PD?
Generally each stage is 2 years, except for stage 2 which is 5 years.
Most define stage 2 as honeymoon stage when medications work and then after 5 years they don’t or not as effectively.

There is no easy answer. Certainly no one size fits all.

I have family with similar, tossing up IL, AL, higher care options etc.

Same as your situation in that the couple have different care needs. 1 has high care needs, inc mobility assist & some cognitive decline.
The other is currently independant but may benefit from housekeeping & cooked meals.

I have been researching Placement Service Agencies to ask advice. How to find the right level of care/quality of life for BOTH? How does double AL work? How does split care work? Financials??

IL. Indep apt within a facility - you will need to provide your DH's care yourself or have visiting aides as you are. So no improvement to now.

AL. A double room within a facility. Will your DH get all the help he needs? Will you have to do the lion's share anyway? (Because you are there & want to or he prefers you to others?) Will you be able to make social connections for yourself or attend activities you like?
Or will AL living mean you'll both be living HIS life?

Combo. High Care/NH + IL.
There places exist where I live (Continuum of Care model) but so many considerations.

Pros: You would be close by, stay very involved, visit your DH in his section multi times a day.

Cons: You may need to *buy into* IL. May be $$$? Maybe not where you want to live.
Eg Many here are modern tiny highrise apartments. Some folk love the city hotel vibe of that - others feel caged.

Going back to the double AL room idea.. Could you TRY it? Not *buy into* the AL facility but rent the room? For say 3-6 months?
Rent your own home out short-term, or if affordable, go between the two places? Try before you *buy* approach.

As.. I dunno.. quality of life notes..

I met a lovely couple when volunteering in a NH. Wife was heart-broken to place her Husband in care but his Parkinson's was very advanced. He was a tall man with much stiffness & while ususally calm, had lost his speech so he would get frustrated at times. Even with aides homelife had gotten too hard. I recall 3 x assist for clothing changes was required in care. 1 to smile & distract while 2 did the work.

So he moved to MC. He had his favorite recliner. Mrs would visit every night & they would sit after dinner together, just as they had done throughout their long marriage. Then she went home. To sleep alone she said through tears to me one night. But to get some SLEEP. Through MY tears I said how the staff had got to know him, what he liked, had become very fond of him. That they cared for him very well. That he was ok.

I have never forgot them. I hope my DH & I can be just like that.

It is sad to have to make these types of decisions. But I think you should use the time as a gift to yourself to do things you might not have been able to do because of your caregiving load.

Visit often and advocate for him.

I wish you all the best.

I know a couple who went to memory care together, though she had no memory issues at all. She said that she'd been with him every day all their married life, and she didn't want to leave him. She did have some mobility problems.

I wouldn't go to a facility with a spouse if there were nothing wrong with me. My caregiving burden has been heavy for some time, and I'd want to try to have normal life again. I'd advocate vigorously for my DH, but from outside the place.

My husband like yours has Parkinson’s, no dementia.
It is progressing so fast, almost daily or weekly. He is falling, soon he will not be walking and there are other concerns which perhaps will get better, perhaps not. I reached acceptance that this is progressive disease and any complications could occur.
I am sure I would not go to AL with him. I was thinking about that at one point. And my husband would never want me to give up my life.
He was in AL recently for respite stay and it was beautiful place, seemingly, but no life. And very little assistance offered for over $300 a day.
And horrible food!
It is not for me, I want to be away from institutions.
And most people were 20+ years older than me, (although I have older friends but they work, travel, lead interesting lives). Most people in AL talk about ailments, complain about everything. To be honest I could not wait to leave. And that would cost about $15,000 per month for two of us.
And my husband probably in two -three years will need NH as per his neurologist. He will reach advanced stage and at that point he will be 2 people transfer. If dementia, incontinence show up then it will be beyond my ability to deal with all of it.

The answer may be that hubby needs memory care and at this point you, yourself, don't need any placement. We have others, if you look at the Forum, facing the aging and trying to figure out the when/where/why and how of it all.
I wish you good luck.

That's a question I think only you can answer. I knew someone whose wife had alzheimers and he lived with her in assisted living for many years. He was able to be with her and socialize with others while nurses were with her. Eventually she had to move to the memory care unit and he visited with her every day. It worked out very well for them. He also had long term care insurance for when his needs would eventually change. His sons were very hands off and not very involved.

Some people who have the resources choose to move to assisted living together (rather independent living with a continuum of care levels) well before either need assistance. I've seen some couples who are in very different places and feelings about it (one wants to do it the other says "move in with the old people? No way" )

You may feel better knowing also that you will have a plan for yourself if there is a continuum of care at the place you choose. You'll want to be sure it's a place that has enough to keep you happy and engaged. I wouldn't base the decision on his ability to adjust. That's a decision based on guilt and I don't think that's a great place to start.

There have been recent very informative posts about what questions to ask if an assisted living arrangement.

I hope others who have made the decision to do this (or not) will chime in with their experiences and thought process.

I'm sorry you and your husband are facing these challenges.

It depends on the facility, but there should not be a problem. Many facilities offer rooms that both of you could stay in together. I have heard of people choosing to go into AL after a spouse dies and they just don't want to be alone.