How to decide to place or try to keep home?

JulieB46

I don’t post often, but I read several times a week. DH has declined to the point of needing daily care while I work full time as a school counselor.  He had a huge decline in November when his doc and I decided to stop Donepezil due to him adding Klonopin.  I really didn’t think it was doing much and had read that we should try to keep meds to as few as possible. We added the Klonopin because I was concerned about his behaviors towards me  Angry, and wanting to do the opposite of what I asked   Anyway, in November, he began sleeping 15 plus a day, didn’t talk, didn’t eat or drink much   I decided it was time for placement   I had visited several with my sister, and we decided on one nearby that had a “deal of $4300 a month( before care).  Care ended up being another $2500.  I signed on November 30th  I thought it was for the first of the year   Nope, it was for December  I immediately felt horrible.  I cried every time I thought about moving him in.  I looked over my notes and wondered if his decline was due to stopping the Donepizil.   I added it back in on that Saturday and he started eating and drinking and staying awake.  I called his doc and said I didn’t want to place him yet.  He said he supports whatever I decided.  So, I left $4700 on the table and he is still  home.  I can retire at the end of the year.  Has anyone kept their LO at home til the end and how did you decide?  Do you spend stupid amounts of money to have placement and feel sad, or do you keep him at home and quit your job and put your life on hold?   I seriously have never felt more unable to make a decision in my adult life. 

Nowhere

I quit my teaching job, retiring early so that we could have at least part of the retirement we’d dreamed of having. This decision was made six years following his MCI diagnosis and it was getting harder to leave him home while I worked. We moved west and had a relatively good six years of hiking and kayaking before he grew too paranoid and delusional (two most difficult  years worth) for me to continue living with him at home.  I placed him in the fall of 2020. Facility life has been a different kind of hell for me. I feel deep guilt and grief in that his life, “being locked up and in prison is not worth living”. His mantra until his dying breath, I’ve no doubt. His brain is broke, but my spirit couldn’t deal and go the distance.  He’s such a nature loving free spirit at heart. He watched three older siblings and his father die in institutions with Alzheimers. He’s had the disease going on 16 years, since I was 50 and he 60. 

Placing my husband was one of the hardest decisions I’ve ever made. It came down to I simply couldn’t care for him any longer as I was sinking. There is no right or wrong with this disease, as it simply knows no rules or boundary. Perhaps, since you have the deposit paid, you could try placing him for a month or two and see how he acclimates? By many reports on this site, loved ones do better than expected in their new homes. Perhaps trying now, will give you a better idea if you truly want to keep working with him placed or retire and resume caring at home before the start of the next school year. There is a third option, too. You might find a home carer or explore a local adult daycare and continue working. Many do. 

Wishing you peace as you move forward. 

Gig Harbor

Hi Julie,

I think that there is no right decision. The one thing that seems to not be mentioned often is how important you are. Much angst goes into trying to make the spouse as happy as possible while the caregiver flounders. You are young and if working more years will bring you financial stability for your retirement and if the work brings you pleasure and fulfillment placement might be the best. Your husband will have both good and bad days if he is placed but he will also have them if he stays home. It sounds like you have family to help if you become sick or injured but for those of us who don’t, placement provides that security. All I can say is don’t let guilt take over your decision process. Marriage is a joint venture and sometimes you will have to make choices for your mental and physical health and that is OK.

Rick4407

Hello Julie, I'll add a post with the opposite situation.  My DW was diagnosed in 2016, so its been 6+ years.  She is now stage 7 and sinking fast.  I've kept her home.  It has been exhausting but overall worth it I think for both of us.  She has remained happy and more or less cooperative.  Anger or hostility were my "deal breakers" that would force me into placing her.  I think Seroquel, initially for her delusions was what made it possible for me.  Now it's a help with fragmented sleep. 

Her neurologist had a Nurse Practitioner who was available by phone or email.  She was able to respond quickly when behaviors got extreme to increase Seroquel dosage or schedule.  Having access to expertise was reassuring.  I have no family available so I hired a caregiver to help out several hours a week with housework, a little supervision of my DW, and another adult to talk to occasionally.   

I've read here a lot and posted occasionally, that's also a convenient form of adult communication.  It has helped me to be prepared for each new step down. 

Living in the moment and not worrying about what might have been was key to my mental health.  My wife is now in palliative care and we expect hospice within a couple of weeks.  These will both be still at home at this point.

I did have a plan B for placement with her on a waiting list at a local MC.  She has been #1 on their list for several years but I keep turning them down.  The tedium has been difficult but I would do the same again.  

It's a very difficult decision and having a plan B is essential.  Good luck!  Rick   

Belldream

Oh Julie, this statement - "I seriously have never felt more unable to make a decision in my adult life." - sums up completely my feelings day and night. I'm sorry I don't have experience either way to share, as I'm in a very similar situation as you at this time. I'm working and don't plan on leaving my job. My husband is a gentle man who has said he only wants to live here with me. He watched his father die of alzheimers at a VA hospital and always said this was his biggest fear for himself. Now that we are at that crossroads, I know he doesn't wish to go anywhere. If he displayed behaviors which made me unsafe or if he had no idea who I was, it'd be so much easier to place him. It's that guilt that was talked about here that gets in my way. And my heart just can't seem to get on board with placing him. For right now, it's working to keep him home. I am working on resources to come in to give me respite for a few hours here and there. At this time I'm working from home FT. It sounds like your job requires you there as a counselor. If you don't feel ready to place, adult day care may be your best option, as they take good care of loved ones and keep them busy with activities and the social aspects are important. It would in my opinion give your LO a taste of what that could be like so maybe down the road, placement would be easier. Again, I have no experience to share, but wanted you to know you are not alone in this heart wrenching experience of trying to decide what is best. Someone here in another thread said what I felt were wise words ... essentially - take note of the worst behavior your LO has, and then make decisions based upon that - because this is only going to get worse, so using the best days to help you decide isn't really a.measure of where he'll be next. I hope that makes sense and you are in my thoughts during this seemingly most difficult time.

Ernie123

Hi Julie: You have my complete sympathy for the stress, guilt, fear and sadness you are living with at this moment. My DW had to be placed 3 years ago and I still remember those days as the most difficult of my life. In her case, the decision to place her was in a way made for me because her paranoia and occasional delusions led her to sometimes see me not as her husband but as a strange intruder. She would become very angry, hit me and try to force me from our house. Her psychiatrist said because safety was becoming an issue I should no longer care for her alone at home. Our children and an Alzheimer’s counselor agreed. So the burden of making the decision was not just mine alone.

I do have some advice for you. Seek out trusted advice from professionals and close family. My brain at that time three years was a snow globe of confusion, stress and emotions. I was not in a good mental state to make a clear decision and it helped me to have the reassurance from others that placement was now necessary for the good of us both.

Don’t assume that your DH will be better off at home with you than in a good MC facility. Once the move is made your LO will become accustomed to a new environment that is staffed by kind, compassionate caregivers and offers a more social setting than being alone at home. My wife, now in stage six, is happiest out in the common area sitting with several other ladies usually listening to music or engaging in a simple group activities. She usually responds better to the PSWS than to me, especially if she is having a bad day.

Finally I would suggest placement sooner is better than later. Decline is inevitable and your caregiving challenges will increase. It is better to plan and make a move on your terms than having to find a sudden placement after some future crisis that you cannot manage. Moving when your DH has some cognitive ability will allow him to become familiar with a new living environment and recognize familiar faces of his caregivers. Then, as he progresses, he will be in a place where he feels safe.

Please let us know how you make out with your situation. You have to think of your own physical and mental health and be aware of your limits. It is so difficult to accept that you cannot change what is unfolding 

Beachfan

Hi Julie,     

My comment will be a bit of a re-run and I apologize in advance.  My DH was placed in a MCF in November 2021, after two years of intensive research and 11 years after his initial diagnosis of MCI.  I had hoped and planned to keep him at home until the end, but always had a plan B on the back burner, "just in case".  COVID gave me an excuse to keep him home longer.  I agree with Gig Harbor; you need to consider your mental health and physical wellbeing as well as your DH's.  I make no apology for placing DH; my kids could see how caring for him 24/7 was affecting all of us.  He is failing and fading daily, 38 miles away; he could just as easily fade and fail right here by my side.  The difference is that I am not fading and failing; I have resumed some semblance of living- - enjoying kids and grandchildren, freedom from stress and physical and mental exhaustion.  The decision to place or not to place is yours and yours alone.  My kids helped make my decision and for that I am extremely grateful.  But as Gig pointed out: let there be no guilt on your part.  One redeeming factor in DH's placement (if there is such an animal) is that by the time he was placed, he knew no one, knew not where he was and it mattered little who was providing care and where, as long as it was loving care.  He is content, well cared for, and well-loved in his MCF.  I visit once a week. He fails while I thrive; it's not fair but it is a fact.  Best wishes with your decision; I don't envy you.  Take your time and allow others to offer opinions; either way, once a decision is made, you will still have doubts.  Time will help; I promise.  

Ed1937

Julie, I'm giving you a link to a video about this by Teepa Snow. She is one of the very best. When Is It Time to Move Someone To Memory Care? 

M1

Like Beachfan this may sound repetitive, but it was threats of violence and not recognizing me that forced the issue here.  Plus inability to find/hire any outside help in our rural area--the few that were available were not covid-vaccinated (she was high-risk), and again the threats of violence precluded being able to bring anyone in.  The irony is that living in a facility was the last thing she wanted, but the only way to go.  and she ended up getting covid in the facility anyway.  Nine months in, it's still pretty rough.

Ed1937

I posted the link above before I saw the video, because I know how good Teepa is. I would suggest that people watch the video because she hits on things that might not be brought up on this forum. 

I know some people say it's best to take furniture and things from home, while others think it is best not to do that because it might feel more like a permanent placing to them. I think it might be best to tell your LO that the facility said we can take furniture and things from home, or they will furnish it (even if they won't). And you can come home when the doctor releases you. Just my two cents, but my wife loved having her own bed and things.

Paris20

My husband was diagnosed with AD in 2015. He lived at home until he had a paralyzing stroke this past May. The decision about care was a moot point. There was no way he could be cared for at home, regardless of the level of help we could get. He remembers nothing that happened after 20 years ago, and is entirely unaware of his condition(s). Whether I’m with him and how often I visit is soon forgotten. He’s in the best facility in town. It costs me an absolute fortune but I know he’s well cared for.

Since he’s been in the nursing facility, my life has improved immeasurably. I am no longer confronted with this horrible disease 24/7. I can read, watch TV, go out to lunch with friends, and will soon have the knee replacement surgery that I postponed until I cannot walk now without pain. I’m no longer attacked, called names, engaged in battles over taking his meds and eating healthfully. I no longer have to wash soiled linens in the middle of the night.  I don’t  have to watch him sleep the rest of his life away while I stress out. 

I visit DH several times a week, come home, and decompress. Visits are becoming tougher as he worsens but he still knows me and I know it makes him happy to see me. I guess what I’m saying is that I’ve reached the stage of acceptance in this grieving we all go through. I used to read here that most caregivers wait too long about the placement decision. I think that’s true, but we learn that a bit late in the journey.

sandwichone123

I am also younger and still working. I planned to keep dh home until either he did not recognize me or he became aggressive. He enjoyed going out for long walks, but increasingly would tell me about "those kids" who were problems and places he'd been asked to leave and I realized he would end up either injured or arrested if I didn't do something.

I knew I 100% did not want to be a full-time caregiver, and I love my job and find meaning in it. I also realized I could better afford memory care than I could quitting my job and staying home. I also realized that my dh, a very social person, would not do well home alone day after day while I was at work. So I put him in memory care.

He has done well there, and I visit him once a week and take him out another day each week. He does know who I am, and misses being home. I feel guilty, and have to talk myself through the whole process over and over and realize there really wasn't a better option available to us.

saltom

Julie, I take my DH to a care facility tomorrow and am having a horrible time trying to get his things together without bursting into tears. His memory doctor thinks he is in a moderate stage, and he has lots of cognitive lucidity as well as bizarre hallucinations. I keep wondering if he is really ready for out of home memory care. On the other hand, he cannot be left alone at all. I can barely get garbage put out in the trash bin without his getting into something. While the home caregiver aid has been wonderful, she is not available as much as I could use her, and I feel rushed trying to get DH up and dressed before she comes because he doesn't want her to see him without all his clothes on.  And the two most important reasons for out of home care are that caring for him is really taking a toll on my health, and if something happens to me our daughter would be stuck finding care for her father in a crisis situation. My family and friends have all said it is time for very practical reasons.  I had a placement specialist arrange tours of three sites and our daughter and I visited them. We both felt a licensed small family home just a mile and a half from our house was the best choice for DH. So tomorrow we take him and leave him. Intellectually, I know it is the right decision - emotionally is another matter.  I do plan on visiting him nearly daily once  he is settled in.  As our daughter said, "Knowing you limits and what you are physically and mentally capable of doing is a lot more than many people."  Whatever your decision, trust yourself and your instincts.  Good luck.

JulieB46

Thank you to all who gave advice and suggestions and support.  I appreciate you all sharing your experiences. I will continue to try to make the best decision for my DH and myself.

JulieB46

Thanks, for your advice.  I tried adult daycare last winter and he was constantly looking for me and didn’t take part in the activities.  I do have caregivers coming to our home daily, so it is buying me time.  I agree with you—I wish he didn’t know who I was— it would be so much easier to place him.  We met with the palliative team, but I don’t think there is much that they can do for him until he requires hospice and then they would provide those services.

JulieB46

Thanks, Ernie. I appreciate your advice. I know he will probably need to be placed as he is becoming more and more angry with me when I try to provide hygiene care.  He refuses showers even every 3 or 4 days, and the only time he changes clothes is when I wrestle him into the shower.  He is carrying on conversations with “ his friends “, but sometimes yells at people in our backyard who aren’t there.  He also believes his parents and siblings who have died are still with us.  I don’t tell him otherwise.  I am going to start seeing a counselor next week. I’m hoping I can figure out what’s best for us both.

JulieB46

Beachfan, I have followed your posts on this forum.  I am envious of you for having such loving and supportive kids.  They supported the move of your DH to MC.  My DH has 2 grown children.  My step daughter supports any decision I will need to make and she just thanks me for taking care of her dad.  My stepson is more critical and I don’t feel supported even though he only visits his dad 2 or 3 times a year. I do look forward to the time when I can enjoy life again.

JulieB46

Paris, thank you for telling me how your life had changed for the better after placing your DH.  I do want my life back. We were a couple who had separate friends as well as couple friends.  There was never a problem with living life separately, I miss being able to get together with friends on the spur of the moment.  I know I will probably place him unless he declines very quickly in the next 6months and we bring hospice in.

ElCy

I placed my DH 6 weeks ago. Never on a million years did I think I would so soon. I thought he was in the early stages. He was driving, cooking, doing laundry, etc. but that all changed after he kicked me out of the house when he didn’t know me and threatened me when I tried repeatedly to return. After a 911 cal and 4 weeks in geripsych, I was informed that he could not be alone.

We have no family and at 67, I still work full time. It just wasn’t feasible for me to quit working. So far he has acclimated well. He has never asked to come home, but always asks me to stay the night. I visit all the time (I live .5 miles from MC) as I want to be with him as much as I can while he still knows me.

This week he had a UTI followed by Covid resulting in double incontinence. I was thankful that there was staff to deal with it, though I had to help a bit. Shook me to the core though. I ache for him everyday. And ache for what we have lost. There’s no good answer. But for me and my DH I believe I made the right choice.