Keeping spouse home

Cherjer

My dh is  mid-late stage 6 and still can walk but shuffles and sleeps well at night so far.

I do have caregivers that come five hours at least three times a week. My question is to those that have kept their spouse home until the end. Would you have put your spouse in memory care if you had a "do over"? Or were you able to give the care (with help) and finally have hospice? 

I am facing this dilemma right now. I have mentioned in previous posts that dh screams so loud when he has anything done regarding hygiene. If I could control this.. life would be much easier! I guess it is his way of communicating and calling out "help" repeatedly. 

Thank you in advance for sharing the experiences you have had keeping a loved one home.

Rick4407

Hello CherJer,  My DW is in stage 7.  As with your DH, traditional hygiene seemed to be a real difficult area.  I have settled on reviewing what is necessary hygiene and what is normal by our cultural standards.  I've settled to only do what is necessary for her health and happiness, not what our cultural standards are.  Her teeth are only occasionally brushed, showers are not regular.  I keep her crotch very clean primarily with a bidet that sprays warm water.  She does not object at all.  I am a fanatic about changing her Depends, about every 3 hours or more often if needed.   My focus is really on what's absolutely necessary for her health and comfort.

Keeping her home has kept her happy and comparatively cooperative (within her ability to understand).  This has worked for us.  Good luck.  

Judi57

Cherjer wrote:

I do have caregivers that come five hours at least three times a week. My question is to those that have kept their spouse home until the end. Would you have put your spouse in memory care if you had a "do over"? Or were you able to give the care (with help) and finally have hospice? 

I am facing this dilemma right now. I have mentioned in previous posts that dh screams so loud when he has anything done regarding hygiene. If I could control this.. life would be much easier! I guess it is his way of communicating and calling out "help" repeatedly. 

Thank you in advance for sharing the experiences you have had keeping a loved one home.

Cherjer,

I would not put my husband in memory care or any nursing facility if I had the chance to "do over."  He stayed at home until the end.  And though there were trying times, it is what I wanted to do for him, and also for my piece of mind.  I would have been visiting every day for hours and wouldn't have accomplished anything at home.  When he slept which was a lot near the end, I could get little chores done.

As for hygiene, I also did what was necessary.  I wiped off his face, arms, hands with warm water.  Teeth brushing when he felt like it.  Private area every day, but only a time of the day when he was really comfortable.  And his favorite was when I massaged and washed his feet.  Shaving him was a chore, but  I managed that once or twice a week.  Trimming his nails was every two weeks.  

But in reality, what I did may not work for others.  It is what worked in my situation.  If everything but the hygiene is okay.  Try baby steps with the washing like I did.  Just wipe the face to begin with, and that's it.  When he gets used to that move on to his hands, and so forth.  

Good luck with your decision.  It's a tough one to make. 

Ed1937

Cherjer, I did not keep my wife home until the end. But she was incontinent, and I cleaned her up for about a year before she was placed. You really can't go by what others have done. It all boils down to what your situation is, and if you are able to handle it properly. There is no shame in saying "I can't do this anymore". Your personal health is more important than anything else. You can't stop his progression, but you can protect your own health.

My wife was also reluctant to hygiene, as are most dementia patients. I agree that it is best to insist on the minimum to keep them healthy and somewhat presentable. Our goal was a shower twice a week, but there were times it was more than a week. Many days she would have a mess in her pants, and at that time I would get her in the shower, but not for a full shower. Just enough to get her cleaned up.

jfkoc

My husband died at home with 24/7 care the last year. I did, however, have Plan B in place and would have turned to it if at home did not work. 

Please have your Plan B at the ready and do get night help as soon as needed. You, w/o sleep, is not going to work and if you go down everything goes down.

All of that said, there are people who seem to flourish in placement.

Cherjer

Thank you so much for sharing your experiences. Tomorrow I meet with my care manager, and I have been encouraged to place my dh. If I can get a few things under control, I hope to keep him home but like you mentioned, Ed, I do have to think of my health. Thank you all for the tips on hygiene! As long he is clean from the waist to the hips I am happy!

Cherjer

Yes jfkoc I will have a Plan B as I often think if something happens to me, what would I do with DH.  That will be a  conversation with the care manager tomorrow. Luckily, I do get a good nights sleep...so far.

Lills

I cared for my DH at home.  He died last April of ALS and FTD.  He had been incontinent since 2018.  When he became bedbound the last 19 months of his life, I had 3 hours of CNA help most days, but after their shift was over, I was terrified that I couldn't turn him and change him without help. At first, I needed much help but I learned...In fact,  in time, I could do everything hospice and all the CNAs did by myself--with the help of a hoyer lift.  I used the hoyer lift, pads with handles and Laven straps to lift him.  Zip-Zap.  

I know there are many on this forum who placed their loved ones.  Certainly, it was a Plan B for me, too.  Many of my friends and family members often tried to talk to me about placing him. You need to decide what works for you and your spouse.  No judgment.  

If I had to do it all over again, I'd absolutely keep him home!!!  Cut-dried.  It worked for me.  I felt I had a purpose and felt useful. I'd like to think I gave him one last gift.  

Beachfan

 I agree with Ed. It becomes a personal decision and no one should sit in judgement whatever you decide. Having said that, I come from the other side of the table. I have the utmost respect and admiration for folks who manage their loved ones at home until the end; I did not follow that path and will make no apology.  For years, I cared for DH at home 24/7; it was easy, I made it look easy. We had a routine, a schedule; when Covid hit, we had nothing to do, nowhere to go. It was a no-brainer. I never employed in-home help. I couldn’t figure out how to reconcile agency help ( 2 to 3 hours per day,X amount of days per week.) I knew I wanted to come and go on my own terms.

By the time Covid started to ease, DH no longer knew me or any family members; I don’t think he knew where he was, he could do next to nothing by himself or for himself.  Plans for a 30 day respite morphed into permanent placement when my kids pointed out that I had no life outside of caregiving and in the grand scheme of things, it no longer mattered who provided care or where it took place.  The bottom line was that they had already lost their dad; they were losing their mom as well. (Upon reflection, I am relieved that they took the decision out of my hands.)

I am happy, I am at peace.  DH is content, well cared for and clearly loved at his MCF.  I visit once a week; it it easy to come and go as there is no recognition, no reciprocation.  He is there; I am here.  Life goes on.  Not what we would have chosen, but what I have to live with.  I don’t envy you (or anyone at this crossroad); it is a gut wrenching experience.  I wish you well.  

*** Lills**** I just read your post ; you have always been one of my heroes with the love and care you provided to the end.. I think of you and your DH at Christmas, recalling how your neighbors lit colorful lights that he could see from his bed. Bittersweet. I hope you are doing well.

Battlebuddy

  I agree with everything that has been said. My husband is home with me and has been his whole journey. When he became aggressive I began looking for memory care. I found a great place . The next day ( strange I know) he began sleeping all day and refusing to get out of bed. 

  Not long after that( a couple months) he stopped walking and became bed bound. I bring this up because many of the Memory Care facilities I visited said he needed to walk in. If your husband is shuffling and you want to place him, just know that you don’t have forever to make that decision. 

    I’m happy that my husband is here. The aggression was controlled with meds, and though not easy, I too am glad he got to remain here with me through Covid etc. I think I will always be happy knowing he got great care. But it’s not for everyone. My situation led me this way but everyone has to travel their own path 

Gig Harbor

Hi CherJer,

I placed my husband in June. He is 12 years older than I am and retired at 61. When I retired at 67 in 2018 he had already had 17 years of doing exactly what he wanted when he wanted. I managed everything and by June I realized I was exhausted and resentful. It was hard to keep him entertained and still take care of everything else. I felt that I needed to have some time for my retirement and not be tied to the house except for 12 hours a week. I also worried about what would happen to him if I were to get sick. I found a new memory care with lots of activities and made the move. He settled in well and never asked to come home. He remembers nothing of our home now and barely remembers our daughter. He has his friends there and seems happy. This sounds selfish on my part but he so thoroughly enjoyed his retirement that I feel it is OK for me to do it too.

Belldream

This topic and all these thoughtful responses have really helped me as well so thank you for posting this. I too am at that crossroads trying to decide.i also work full time out of my home but I will need to go to an office on occasion and have to figure out who might be able to come be with DH. He just came home after 2 months at a SNF and before that he was much higher functioning and could be left alone. He is somewhat incontinent,  using the toilet intermittently and often missing the toilet. He gets up throughout the night which gives me less sleep. Thus my posting at 4am here. He does get somewhat aggressive, mostly he's upset I won't let him do something he wants to do. Sometimes he's quite lucid and says he's so happy to live with me and loves me so much. This breaks my heart and I feel guilty for thinking of placing him. I have a similar  situation where my friends, family and children all feel he'd be best placed, and they don't like to see me have no life. I have to wonder if they are just thinking they'd never be able to do this so why should I be able to. Like when someone makes fun of something because they're actually scared of it. I want to give him this gift of caring for him. Yet I wonder if I'm really still in denial. He's been diagnosed with alzheimers and there's no coming back from that. He's only going to get worse. These are things I have to keep telling myself.  Look at the huge change in him over the last 3 months. When I reflect on that and all the little signs along the way that I didn't realize were signs of his decline because they were small, and blurred into our daily life. I can take on this little thing, then this other little thing. I adjusted accordingly.  But now with this mental decline, he is babbling much of the day. He giggles to himself at nothing I know about. He talks to me in all seriousness and wants an answer when I have no idea what he is saying, the words are all jumbled like a scrabble board turned over. And there are times he feels we are in danger, and we need to pack and leave this place. He sees people here when it's just us two. I have a few meds that calm him but then I feel like I'm drugging him so we can keep at this. While I'm working, he naps some, and otherwise he's sitting there with nothing to do, just staring. I have little things to keep him busy but he only looks at them occasionally. If I ask him if he's bored or lonely he doesn't seem to understand my question. It's so hard and heartbreaking to be put in this position to choose where and with whom someone should live their life. One.minute I'm sure I'm placing him, the next I'm sure I'm caring for him here.

ghphotog

Belldream, I'm also undecided about placing. Some days I'm sure I can keep her home but other days I think a lot about placement. My DW should be placed but I just can't do that to her right now even though it would probably be best for both of us. I have a hard time making the hard choices when it comes to this. She would be so lost without me so I'm going to try to at least wait until she no longer knows me or family. Currently she doesn't know where she's at. She doesn't recognize our home anymore so it may not be too much longer when she doesn't know who I am then maybe it will be easier to decide.

Cherjer

Thank all of  you for your comments and seems like many of us are in the same situation on doing the right thing for our spouses. Since I posted I have met with my care manager and at home doctor. My care manager is concerned about how my health will be affected by keeping dh home. I completely agree with her, but right now with outside help, I think I can do this for awhile longer. 

Belldream, it must be so hard to work and at the same time take care of your dh. I do hope you have some caregiver help when you are working. 

This forum is so helpful and bless us all for supporting each other on this journey that we never expected.

wants out

please tell me how to get help.I'm at my whits end,family are no help either.

F&E

Wants out go to the top of this page and touch the green box ;top right corner;(add post)then type in your topic and then type in your circumstances questions,etc.This will start a new thread about your topic Also,sorry for your troubles.This forum is where plenty of help is available ps when finished touch the box at the bottom of the page marked POST

Ed1937

F&E wrote:

Wants out go to the top of this page and touch the green box ;top right corner;(add post)then type in your topic and then type in your circumstances questions,etc.This will start a new thread 

Actually, you need to go to the top of the page, then click on Spouse or Partner caregiver forum. Then you can look for the "New Topic" button. You will get a lot more replies with a new topic because with ongoing threads you will not get the exposure. Also please tell us what is going on. Let us know what is bothering you. Welcome to the forum. You will get a lot of help and understanding here.

F&E

Ed 1937. Thank you for the correction

Ed1937

You're welcome. That's been done before. Nothing to worry about.