‘Just Put Her in a Home,' They Say

I hear you, Bill_2001. I was where you are 6 months ago. Then sh*t hit the fan, and I had to make the tough decision. The saving grace was that I took the advice of many posters here and started researching/vetting memory care facilities early, and as one poster had said, "you should have started yesterday!" So I was prepared and chose a couple of facilities where DH was placed on a waitlist with both of them. When a bed became available, it couldn't have come at a better time.

I wish you well and hope that you're able to take care of your wife to the very end. I had hoped the same for my DH but it just didn't work out that way for us. Be flexible and be prepared is the best advice I have.

Dear Bill,

Thank you for addressing the financial aspects of this situation. When I read all the posts here about placement, i wonder aloud how everyone is paying for this. I, too, am still working, but fortunately my clients come to the house. Whatever I'm earning helps to pay for a very part time care giver who gives me some respite for a few hours so that I can leave the house and not be stressed out . Unfortunately, the day care facility which is a blessing for so many, was not a good fit for my husband, and the drop off was so traumatic for me--I decided to use the money for private care.

I've been down the Medicaid route with my mom, who out lived her funds, and let me tell you, it was a nightmare, When she finally was poor enough to qualify, I was told that there was a 6 month to a year waiting list to get ANY home care for her. She was 102, on hospice during covid, so I kept her existing caregivers (private pay) and took out a $30,000 personal loan to pay for her care. When she died, all that money had been used as well.

I live in a resort area, and year round housing is scarce and expensive, so we rent out a guest apartment over our garage to a full time resident, and that also helps me maintain things around here. Hopefully I can keep things going this way for awhile.

I should add that my "life experience" with our medical system has contributed to my determination to find a way to avoid this inhumane system that we have here . It stems from my father's long drawn out battle with Parkinson's, back in the 60s and through the 70s. My parents had no assets to speak of.When dad reached the point where he needed to be in a nursing home, my mother, who was a nurse, was told that her salary was just a few thousand dollars too high for any financial help.(literally about 2000.)

At that time, the advice we were given by a social worker was: Divorce, or, "quit your job and go on welfare and the state will pay for your husband". Nothing has changed since then, its disgusting. My mom refused to do either, and we ended up in family court. I know that these experiences have made me bitter and resentful, but I feel that there has to be a better way to assist the millions of us who are caring for our loved ones with no compensation and very little assistance. I hope you are able to continue with your current plan and not burn out. All the best to you.

Bill, I’m so glad you wrote you did. I’ve been struggling recently wondering if I’m doing the best thing by keeping my husband at home. Family and friends have gently suggested that they’re concerned about me.

For me, just thinking about living in this big house alone and not having him share my bed is too sad to even contemplate. Then there’s the money aspect. We’re not rich, but we’re not poor either. Even if he could qualify for Medicaid in a memory care facility, that would leave me with very little to live on.

it’s a sad situation, and a sad disease . For today, with God’s help, I will carry on and take the best care of him that I can. God bless you, Bill, and thank you for sharing.

Thank you Bill. I don't know what else to say. I am very fortunate that I've been able to stay home and take care of my DH as things progress. I still think about when/how/where to place him if I have to. I want him here with me, always. You expressed all of the concerns so well. Wishing you the best.

Bill,

All respect to you. Thanks so much for posting your feelings. It helps us all. I know how you feel and struggle with this decision daily. In fact I am in the midst of a respite/trial care period at a memory care facility for my wife. I figured I won't know how she does and how I feel unless I try it. It's been two weeks and it is all going well...as well as it can be anyway.

I talked with her when her symptoms started to progress, saying I probably won't be able to do this "until the end". She understood and agreed. So here I am trying to decide. What to do? No good answer. It's a struggle either way.

I watched my dad go down struggling to take care of his wife, no help, didn't want it. He ended up with dementia with behavioral issues and caused myself and my siblings much heartache. My DW and I vowed we'd never want to impact our son's life negatively if we could avoid it. I wouldn't want to effect her's or my son's live if I was living with dementia.

She's in a memory care community within walking distance of our house that we've lived in for 37 years. All reports from caregivers and other spouses I've talked to that have loved ones in the community are that she is doing well. I've seen nothing to cause me concern so far. Although it breaks my heart, I think her staying there is best for her and best for me. That's how we always lived...family as a whole is first.

That being said, I know how it is different for everyone. I wish you all the best and I am sorry you have to make such difficult decisions, especially since "it sucks no matter what you do".

I was one of those caregivers whose situation required that I find placement, quickly, for my husband. Diagnosed with AD in 2015, he had a paralyzing stroke in 2022 that made caring for him at home impossible. My children and I found a good facility for him only ten minutes from our home.

i had wondered, before the stroke, how I would make the fateful decision about placement. I no longer had to consider it. I had postponed knee replacement surgery in order to care for DH…to the point where I could hardly walk. I finally had the surgery this past January and I have returned to my workouts at the Y. I had given up exercise just before the pandemic. During my years at home with DH, I put on weight (stress eating). I have now taken all of it off. I stopped drinking alcohol too. So many friends and family members kept telling me to take care of myself. I have finally been able to heed their advice.

Crushed, you are very talented. I love your poem.

It is a disgrace that you have to face the financial dilemma you describe in one of the richest countries in the world. But it is the way it is in America. Given that, it may not matter that there are other factors not highlighted in this discussion that would be important absent the financial issue.

I made the difficult decision to place my DW in a residential facility last September. The immediate reason was that I found I could not keep her safe despite 24/7 in-home care. She managed to get in the car and turn the ignition on (fortunately couldn’t start the engine). And I could not keep her from climbing stairs despite having round the clock help.

After she moved into the residential facility I was pleased to find that her quality of life was dramatically better than it had been at home with me for years. While it is true that I would deal with incontinence faster and probably more thoroughly than the care home does, I was unable to provide her with the social interactions and intellectual stimulation she gets daily now. She is far happier now even though she only sees me a few hours a day. Yes, being alone is hard on me. But I’m not the one with the devastating illness. I can deal with it. It is a great comfort to me that she has a much better life now, even though I’m a smaller part of it.

I feel for you , Bill, and wish you well.

I've been caring for my DH as he's declined, sometimes slowly, sometimes by sudden big steps, over the past eight years. I covered everything by myself until last summer, when it became clear that he couldn't be left at home while I worked. He wandered off and was found a mile away, he tried cooking by putting plates directly on the stove burner. So I began to bring in home-care workers, and that has helped, but only partially. He's going into memory care later this week. I was lucky to find a place nearby where a friend has had her parents living, and they're very happy with it. I've done research and have found overwhelmingly good reviews.

The other piece of luck comes from planning. My DH set us both up with long-term care policies when we married 30 years ago. His mother had early-onset Alzheimer's and he was always worried about it. It doesn't cover everything, but it takes a bite out of the cost.

I hoped it would never reach this point, but he needs more help than I'm capable of giving. After two falls in two months, I'm afraid that he'll get seriously hurt, or that I won't be able to get him up, or I'll injure myself trying. We live in a rural area, and 911 would take a long time to get here. None of this is easy, but I'd like to be able to pass pleasant times with him and not make myself ill trying to care for him, take care of all the bills and household stuff, maintain a hard-fought-for career, etc.

If I wanted to join a group with similar Dementia experiences, it would be this Post. My DW was diagnosed with MCI 6 years ago and has been slowly getting worse, her memory is now about zero. I was retired so our world is getting smaller together. The worsening of her condition is slow and I can mostly see it in the rear-view mirror. Even though I identify and could honestly say what has been said, I feel it is important that I comment to get some thoughts out of my head and on to paper. DW is often uncooperative, and I have not been able to put that behavior aside. So, I will be patient and wait for DW condition to worsen which I believe will give me a clear direction. I read these posts to prepare myself for the future.

Dave

Correct.

I was just saying that in our planning we focused on what resources were needed while he was alive and hadn't given it a thought to how the resources would be affected by his death.

As far as Social Security, if only one spouse worked and had SS, the surviving spouse who didn't work continues to receive that monthly amount.

However if both spouses worked, the surviving spouse does not collect 2 Social Security checks every month. That survivor only gets one check - and that check is the higher amount one. So in effect the survivor of a two-income household has reduced monthly income.

I'm not saying this is right or wrong - but the survivor of the two-income household gets penalized in a way.