Keeping Loved Ones Home As Long As Possible

Sunnyside42

My DH is still doing okay going into our 4th year of Alzheimers diagnosis. We have a 3 bedroom home. My daughter and 12 year old son live with us so there are no extra bedrooms. I would like him to be at home as long as possible and as long as I am able to care for him. He is 86 and I am 81. Physically we are both in good condition. At some point, he would probably need a special hospital-type bed and that is my dilemma here. I am trying to imagine where we put that. Get rid of our queen bed that we share now and he can be in the bedroom. Then I would have a small twin bed in the same room? I am wondering how others have done this. If it were just he and I, that would not be an issue. Also, if you do not sleep in the same room, where do you sleep and how do you know their needs during the night? This situation might or might not be far ahead, but I am getting a bit anxious thinking how we would handle his staying in our home. Thank you.

mpang123

My parents sleep in separate bedrooms. But if my dad needs a hospital bed, there will be no room because he is sleeping on a queen size bed and the bedroom is too small for both. How will he get rid of the queen bed?

Rick4407

Your solution of hospital bed & twin bed may be necessary. My DW slept very soundly on a moderate dose of seroquel. We slept together through the entire journey in our queen size bed. Her mobility was very limited the last couple of weeks. Hospice brought a hospital bed and put it in the living room but it was never used. Her last night she was restless and moaning at about 3-4 AM. I gave her a little morphine and she settled down. I stayed up with her until about 10AM when she died. I kept her in "Depends" and on 1 or 2 chux and the bed stayed dry. It was a very difficult day. My absolute focus was on her being comfortable, I didn't think I could do that from the next room. Rick

ImMaggieMae

My DH can no longer get up the stairs to our bedroom so he sleeps in a hospital bed in the great room downstairs. I push it over by the sofa at night. (Perpendicular to the sofa actually, so my head is only a couple feet from his). I sleep on the sofa. Not the most comfortable place for me, but it works. He is late stage 6.

Babz0226

I appreciate all these comments because that is my goal, I hope I can do it,. My DH is 77 yrs old and MC since 2017 but late stage 6 touching stage7. Thank you for all these responses they give me hope I can do this at home.

mpang123

I have the solution to my previous post about where to put the queen bed if he gets a hospital bed. I just remembered that my parents have a garage where they can store it. So that answers the question.

Sunnyside42

https://alzconnected.org/discussion/comment/210542#Comment_210542

The hospital bed and twin is what I am thinking. Since he is doing so well so far (aside not remembering 5 minutes ago), I am hoping our journey parallels yours, in that there won’t even be a need for the hospital type bed. The advantage to that bed is that they are adjustable. I have been in an in-person support group for three years. Last year we lost four of the loved ones. Two of those stayed home to the end. Unless it changes, my DH is a very gentle agreeable guy with sense of humor in tact and always a willingness to help.

ImMaggieMae

The hospital bed was needed in our case because my DH has acid reflux plus some swallowing issues, so even in our regular king size bed upstairs we had a couple memory foam wedge things to elevate his head. The adjustable head (and feet) on the hospital bed make it so much easier to get the right height. And because it’s in the family room downstairs and he’s only in the bed at night, it’s easy to move it around with the wheels. If at some time I have to change him in the bed rather than in the bathroom, being able to move and adjust it should make things easier. I wish there was space for a twin size bed for me downstairs. Sleeping on the sofa gets old.

harshedbuzz

@Sunnyside42

It's really hard to say, so it's best to be open-minded and have a Plan B ready for all possibilities.

In the spirit of hope for the best but prepare for the worst-

At 81, I would at least tour several MCFs and SNF and decide which you'd use if necessary. The progression of dementia will impact your DH physically at some point. My dad was swimming laps almost daily in the middle stage and shuffling by the later one; in the last year he was frail and hands-on fall risk. The other consideration is about his care if something should happen to you. One third of caregivers predecease their LOs. A fall or medical crisis could land you unable to provide care and what efforts your DD can make after her other responsibilities directed at you. Even if placement would be temporary, say SNF after a qualifying hospitalization for rehab or MCF for respite so you could recover at home during treatment, it's best to know where you'd want to go ahead of time.

Some couple share a bed until the very end, others do not for a host of reasons. Sometimes incontinence is a huge issue. Sometimes PWD become very restless sleepers; mom was a trigger for dad to want to have conversations or threaten her. A certain percentage have difficulties with spatial awareness and tend to "starfish" the bed and cannot be moved. Many at-home caregivers don't bring in a hospital bed until they add hospice services. A hospital bed is as much for the caregiver as PWD— being adjustable saves backs when giving bed baths and changing incontinence products. It is also easier to change bedding on a hospital bed compared to a Queen or King.

Some folks elect to put the hospital bed in a more public area of the house as their LO becomes frailer and spends more time in bed. This might give them more socialization and access to TV. Others put the bed in a bedroom and add a cot, twin or even a recliner for the caregiver.

Another option would be to share a room with your adult daughter at that point. Often people use motion detection mats to alert them that the PWD is on-the-move so they can redirect to bed or assist in the bathroom. Depending on circumstances, she might not still be with you.

HB

Sunnyside42

Thank you for the common sense reply. I have thought this through now as much as possible. Assuming DH is here until the end, I would put our queen size bed and mattress in the garage, use hospital type bed and a twin bed for me in the same room. Impossible to know the timeline because of our ages and his relatively good physical condition. I say “relatively” because there are times when his balance is off especially in the mornings. We were given a very nice folding walker recently by a friend whose mother passed away with Lewy Body. I didn’t think we needed that but in the mornings upon getting out of bed, he does use it because that is when the balance is off. We haven’t gotten into the incontinence part yet. He still takes care of his needs like shaving, brushing teeth. I have to choose clothing and turn on the shower for him, put shampoo on his head, and then leave him to finish. So that’s where we are. Everyone’s journey with Alzheimer is slightly different. So far, he is easy to cope with most times. Also I began an in person support group from the beginning and it educated me right away about what NOT to do to cause escalation. Mostly that has worked.

Sunnyside42

https://alzconnected.org/discussion/comment/210571#Comment_210571

To add to my reply to you, we are already set up in a local Alzheimers Care Home if something should happen to me or his circumstances change so that I cannot take care of him. He goes to their Day Club one day a week for 5 hours which is ample time for me to swim and/or take care of myself in another way. To qualify for the Day Club we had to go through all the paperwork but now he would be able to be there longer if needed until I could find a more reasonable solution (it is $10,000 month there but a wonderful first class facility and Alzheimers specific).

gampiano

I also put the hospital bed downstairs and slept on the couch, exactly perpendicular to it! This worked until the last days. Basically, the entire back of the house became a hospital room. It worked, and sometimes i still sleep on that couch… go figure

ButterflyWings

Couch potato here too. DH as well. It is a reclining strato-lounger type structure and helps with his asthma so he doesn't lie flat and get all choked up. I use chux disposable pads and am able to be right next to him. Not as comfortable but I was up constantly even with the hospital bed from hospice due to his various issues at the time. He would slide down to lie flat and start coughing and wheezing. I'd have to get up, lower the hospital bed top portion. Slide him back up to the top, tilt it back up, go back to sleep, rinse and repeat in another hour or so. Then he'd start fiddling with the diaper and end up with soaked clothes, chux, sheet and blanket. Up again - changing him and everything, tossing laundry in, and trash out - back to bed for an hour maybe. The only good thing is the hospital bed air mattress can be wiped down quickly and doesn't need full linens.

The hospital bed was used a few months, two separate times when he had downturns to the point that he couldn't stand or help me help him at all (with toileting, hygiene, sitting up at all to eat or drink, etc.) So, hospice put the hospital bed in the guest bedroom and I just shifted over from our bedroom. When we use that bed, I sleep on a twin bed right next to it. Sort of like Ricky and Lucy in the old "I Love Lucy" days of two twins, but just right next to each other almost like a double bed. His hospital bed air mattress is easier to wipe down, and easier to get him changed and cleaned up, etc.

I much prefer him being mobile obviously, and as long as he is able to stand up with my help, and keep his own balance while I sponge bathe and change him plus dress him - we will sleep in the living room on the couch. I was on the couch anyway for years since he is a wanderer and I had to sleep with one eye open in line-of-sight of front and back doors. I don't miss those days. He is still exit-seeking in spirit but just can't execute any more. As much as his progression saddens me, those were some scary, stressful times back in mid-stages.

Sunnyside42

https://alzconnected.org/discussion/comment/210661#Comment_210661

ButterflyWings, Thank you for the many options. I guess this is going to be whatever works when needed. We aren’t there yet, but who knows when this could change and what the needs will be for each change. I am grateful for this site and the suggestions and input. Every situation is different too. In my case, my choice of where his bed should be is determined by the fact that my daughter and 12 year old son live with us. We have a 3 bedroom home and they occupy two. Our bedroom is relatively large, so I can visualize using the hospital type bed for him, and getting a twin bed for myself, putting our Queen bed in the garage. I do not see us sleeping in the same bed to the end as some people have.

ronda b

https://alzconnected.org/discussion/comment/210571#Comment_210571

ronda b

My DH and I have separate rooms for many reasons. He goes to bed at 6pm and gets up up anywhere from 2am to4am ,stays up for a couple of hours and goes back to bed usually for a couple more hours. I put a baby monitor in his room. It has helped so much. I can tell if he is having any kind of problems.