Giving Up The House

LunaCat

I’ve seen some wonderful advice on this forum, so now, I’m reaching out.

My H are retired. I am lucky enough not to have any health issues. My H has LBD.  He doesn’t have any physical disabilities, but has cognitive issues.  He still can do all the ADLs, but I am not comfortable leaving him home alone. He attends Adult Day Care (ADC) three days a week for seven hours a day. I’m lucky, I know, but I’m tired. I’m going to be 70 and am just running out of energy. 

I get up a at 5:00 and by the time I get him up, showered, dressed, fed and dropped off, I’m exhausted. He doesn’t like ADC, so I’ve got to keep him distracted with a high energy optimistic attitude.  It wears me out. Then I have to do all the errands and things around the house that I can’t do while he’s home; house cleaning, laundry, and maintaining the house.  I also try to sneak in an hour of just sitting quietly. Then, pick him up at 4:00, get home, make dinner, clean up and maybe get done around 7:00. Again, exhausted. The days he’s home are no better. He sleeps all day and I struggle to keep him active and entertained. We have no children or family, so it’s just us.

I know I have it better than most. But, like most I’m depressed, lonely, tired, frustrated and just don’t want to do this anymore. I don’t see any time in the future where I could justify or accept having my H go to a MCF. That’s a whole other issue.

So, I’m thinking of giving up the house and moving into a senior independent living situation. I’m torn because I know that I wouldn’t even consider this if I was by myself.  We have a small two bed/two bath villa. But, the thought of someone else doing the housework and cooking (including planning, shopping, preparing and cleanup), and maintenance on the house, sounds real good. It would make meeting people easier.  There could be more activities for us to do together.

So, does this sound realistic or desperate? Would I regret this later?

I would appreciate any opinions.

toolbeltexpert

Lunacat  I don't have any advice on selling but I am following g this because I have the same thoughts. Selling and putting my dw in mcf and maybe buy a little place to live near where she would be. We have a farm with 16+ acres. And it's getting harder to keep it up.  I am sorry your having  these problems, I wouldn't wish Alzheimers on my worst enemy.

jmlarue

Is money no object? Worst case scenario...can you afford to place your DH in a MCF as a private pay and pay the expenses for your independent living facility, too? I know we couldn't do that. I would need the help of Medicaid to pay for long term care for my DH so that I could still afford to maintain a home and live independently.  Once you sell your home, I believe the proceeds become a cash asset that you would be expected to spend down to a pittance before Medicaid might kick in to cover the cost of your DH's care. You remaining in an independent living situation would still be all on you. Even if the proceeds from your house sale is used to purchase the "senior villa" as real property, you'd still be looking at some (possibly large) monthly payment for a leasehold on the land and/or maintenance fee each month. Even if you consider yourselves financially able to do this, I would strongly suggest that you speak with a Certified Elder Law Attorney to discuss the financial ramifications of such a move.

BethL

When he sleeps all day and you try to get him up and keep him busy, give yourself a break. Let him sleep - that is, unless it would mean he doesn't sleep at night.

ButterflyWings

LunaCat wrote:

 I’m torn because I know that I wouldn’t even consider this if I was by myself... There could be more activities for us to do together.

So, does this sound realistic or desperate? Would I regret this later?

LunaCat - I'm sorry you are going through this. Sorry for all of us and our loved ones that this dratted disease even exists. Just reading your last paragraph, I would say definitely don't make any quick or rash decisions without consulting the CELA as recommended. The shock and stress of dementia caregiving, especially for a spouse, is enough to make decision-making very complicated, I know. Throwing all our plans out the window now, and considering things I never even imagined would need to be on the radar.

Based on your 2 sentences above, it seems to me that you are hoping for something that can only be temporary if at all -- your husband may not be able or willing to participate in the activities in a new location even now. And with inevitable decline in this progressive disease, "together" ends up not being feasible, or at least not in the traditional couples way of non-dementia togetherness. Would you regret giving up your place if that was the outcome?

In a way we are "by ourselves" already, in terms of trying to make decisions based on what is best for us as dementia widows - while our LOs are still here. It is very tough to think that way I know because I am struggling with it myself. His needs come first every day and they are usually pretty urgent. I am trying, though, to realize that "future" plans need to be based on what is best for me.  He will not be here due to his terminal disease, and actually he is absent more and more every day already. We are not taught to think this way. It is very tough.

Yes you sound a little desperate to have some help which is understandable. Boy do we understand that here. However, does it mean you "give up" your house/home that it sounds like you love and stated you would not otherwise do that? I think you are asking the right questions and are wise to reach out for input, especially the professional legal advice to consider all implications. Good luck to you.

 

terei

jml made some good points.  You should not consider selling your jointly owned home until you have some detailed advice from a certified elder law attorney(CELA).

I also agree that him sleeping is part of his progression + I would not spend a lot of time discouraging that unless it causes him to be awake at night.

Your health + welfare is as important as your LO’s..   Don’t reject placement out of hand.  It really sounds like you are exhausted + I would be checking out facilities so you have a plan B. What would you like your life to look like if (when) your LO is gone?  Take that into account because your role as caretaker is not permanent.  You will eventually have to make decisions that are strictly for YOU.

Ed1937

If you decide to sell, you should definitely see a CELA first. Doing it the wrong way could prove very costly in the long run.

I think you need to make a list of all the pros and cons of what you're considering. When you have all the pros and cons next to each other, it might make your decision a little easier. Just don't forget to look at what the future might look like with whatever decision you make. And even though you might not think about placement now, do consider that it could be necessary down the road. If that became necessary, would you then be sorry about the choice you now make? Are there other ways to make your life easier now? There are just so many things to consider. I wish you luck with your decision.

Jo C.

Oh gosh, you sound exhausted and pretty much overwhelmed; I am so sorry.  I can understand your wanting to do this as it sounds good as an alternative.  However; I question the outcome and agree that you absolutely need  to seek advice of a Certified Long Term Care Attorney (CELA) before you make such a decision.

One; any money you have from the sale of the house will then count against qualifying for Long Term Medicaid if it comes to pass when you need that level of care for your husband and you will have to "spend down" much of the money to qualify for his meeting criteria for Medicaid - and that leaves you at risk for your own needs including where you can live as you age or if you should become ill. 

Second; if you are thinking of taking your husband with you into the Independent Living setting, the time will come that he will not be qualified to live in such a setting and you probably may be asked to place him or lose your own ability to live there.

Can you afford to pay for both your own Indepedent Living and your husband's MC or NH care?

Is it financially possible to hire someone to come in and do cleaning and other chores for you to free you up and get some rest?  Even if you move to an IL setting, you will still have all of your husband's dynamics to manage if he is with you and he will continue to decline within his dementia leaving you to handle all of that and more as he declines, or else admit him to MC.

The choices are fraught with many unknowns, but that CELA will be able to advise you and set you on a path that will be best to preserve what you have for the future, and the future will get here faster than we all think we know.

From my personal point of view, I would not recommend selling your house at least at this point, but then; I am not a CELA.

Please let us know how you are doing, and if you do seek the advice of a CELA, and how things are going, we will be thinking of you and we truly do care.

J.

Stuck in the middle

I have priced assisted living in my area, and it is a lot less expensive (for me) to hire a housekeeper and a lawn care service, and to throw one-dish meals together when we don't eat out.  I can order groceries on line and the clerks will bring them to the car.

Old89

These are very individualized situations and depend on each person's values and resources.  Age, health, life expectancy all impact the decision.  I am doing exactly what you are considering for the very reasons you are considering it.  I have been through - no way will I place my wife.  Hired a housekeeper/caregiver with mixed results.  Full time it is expensive.  And it adds its own responsibilities.   Many houses have sufficient equity to pay independent living expenses for quite a while.

I likewise would not make this choice on my own.  But I decided I just do not have it in me to provide the care for my wife personally.   This is exacerbated due to her believing I am her brother meaning we have no marriage relationship.  I see no benefit to her and a huge cost to me personally in being her personal caregiver.  So my choice is to care for her by moving her to an assisted living situation with me living in the independent part of the same facility.   That way I monitor her care, see her frequently as "her brother" but do not have to spend every minute of every day and be hyper vigilant at all times.  My health will not hold out doing this by myself with our without in home care.   I will see in a while if it is a wise decision but it is one I have thought about  great deal.  The burdens of maintaining a house properly while caring for a spouse with dementia and losing my life's love, has been too much.  I have felt my life was not worth living any longer due to these burdens.  That drove me to reconstructing how I care for her.  I care and always will but will not personally provide the care.

harshedbuzz

Luna C-

I attempted to answer your post yesterday and it disappeared into the ether. I will try again.

I agree with others that your first consultation should be with a CELA to understand how this could impact you vis a vis qualifying DH for Medicaid if it becomes necessary. You would also want to use their services to vet any contract you would need to sign ahead of moving. Mom's CELA was very familiar with the various CCRCs (continuing care retirement community) in our area in terms of which were good and which were only so-so.

I feel it's important to think about where you want to be in stage 8 and include that in your decision-making. If you would be happier in your current home, maybe renting it and moving to a 55+ apartment would ease some of your burden. I moved my parents back to the area in which they raised me when dad was diagnosed fairly late in the game. I dearly wanted mom to move into a lovely CCRC for a lot of reasons- to replace the activities and amenities she lost moving from Florida, a ready built social life and to have services for dad as his needs increased. Alas, she would not budge. She wanted homeownership; I found her a 55+ community with a pool and clubhouse and large shopping district walking distance from her cute little carriage house. Her HOA provides all exterior and lawn maintenance. She's very settled there in her widowhood. Before we found the house, she'd been in a beautiful 55+ apartment but it was quite small and she's a person who needed her space from dad's mess and noise. 

Three people I know have made the move to a CCRC starting in the Independent Living area. A few caveats about CCRCs.-

1. The units tend to be small. In many the 2 BR will run about 1200 sqft which may seem small if you are coming from a sprawling suburban house. 

2. During the pandemic (and especially bad flu outbreaks) these places sometimes go into a more "medical facility" mode in terms of restricting movement of residents-- even those who are fully independent in their own cottages may have issues leaving and re-entering the campus. Friends' moms who signed onto IL because she felt she'd "cooked enough" found that all of her activities and dining room meals were canceled. One poor lady ate tepid food out of Styrofoam containers for over a year. 

3. Some CCRCs have a rigorous physical to be passed before a space is offered. If the business model is that care will be provided going forward, they will look to limit those with dementia by screening for it. My first choice CCRC did this; dad would never have passed. 

4. One thing we were warned about by our CELA was that the quality of the different units within these complexes can really vary. Often the IL and AL areas are lovely but the SN might be kind of an after-thought. This matters if you or your DH needs rehab after an illness or accident. My one friend's mom lived for 20 years in a Lutheran CCRC and did rehab/SNF twice- once for a broken hip and 5 years later when she had COVID. My friend is an RN and was quite impressed, but a member of my IRL support group who lived at the place I wanted to move my parents to would not use the SNF/rehab associated with his CCRC. He was a retired physician.

5. Often these places do offer SNF and personal care, but they're not really big enough to run a full-fledged MCU with dementia trained staff and dementia-informed care. 

6. The social piece. Even if you find a CCRC or other 55+ living option, you may have difficulty integrating into the social life with a PWD. Many older people who have not had a cognitive shift are not interested in including those who have. You would likely find friends, but if your DH is obviously impaired or unfiltered, people may avoid him. I saw this with my own dad at his home in FL, the apartment and the place where mom lives now. 

6. There are some real plusses to a CCRC. The doctor I mentioned earlier was able to hire caregivers (as one might hire a baby sitter- self pay) for his wife from a pool of people who already worked with them and with whom his wife was familiar. It was also nice for them to go for walks and to the pool/gym together. They had meals together with long-term friends in the main dining room for a long time, but eventually he was able to dine with her in the SNF. He even brought her back to their apartment some afternoons once she went to the SNF.

Not related specifically to CCRCs, but I believe any steps a caregiver takes to streamline their life and lessen their burdens around the day-to-day benefit the PWD greatly. 

HB

LunaCat

Firstly, thank you all for your advice and suggestions.

We first downsized from a large home three years ago. You all are correct about contacting a CELA. I could not have done it without a the help of a CELA who was instrumental in creating new wills, advanced directives (living wills), and POAs. Additionally, I would suggest talking to a Certified Financial Planner.  Both these people worked to give me more financial control and to protect my H if anything happens to me. Thankfully, I got all that done before my H had a serious decline. 

All that aside, I struggle with the emotional and psychological aspect of making a move. As I said, I’m near 70. Hate to say it, but my future is now. I can’t plan for the time when he will not be here. That time may never come. My H is physically healthy, but cognitively impaired enough to need supervision. He really is still pretty easygoing.  My goal is to make both our lives enjoyable. Right now his is, but mine is not. I don’t want to sacrifice his happiness to find mine. It’s tough trying to find that happy medium. 

I guess I’ll do a little more research and a lot more soul searching.

Again, thanks for all your compassion and love.