My mental dilemma

spirit97x3

  First time posting and want to thank all for helping me get thru a lot the year or so by reading your post. Have learned a lot about what was to come and is to come. Help me get thru a lot of things, especially mentally and emotionally. My wife is is in last of 6E Alzheimer's. Started about 6 years ago. 3 years this July she jumped from stage 3 to stage 6 withing 2 weeks after 3 visits to the ER from blacking out and falling. We've been married for 33 years and have always been together.

Here's the tough question I'm having a hard time with because of guilt on my part. She's getting ready to go into stage 7 anytime now and need to go with the electric bed type for her. As most know we don't get much rest or sleep when we are the only caregiver 24/7. Choice I need to make is change our room to her bed and a twin bed for self or set hers in spare bedroom, which would separate us at bedtime. I know it sounds crazy, but just not sure what to do? I'm having a hard time with having to deal with the thot of her being alone a lot of times especially at night. I know she sleeps a lot more now, but this is just so much harder to deal with than all the other things I've had to do so far in our journey thru this decease. Really tears me up inside on this one. Harder than watching her suffer daily with just everyday things. Hard for me to not be able to fix this that she is going thru. I've always been able to take care of and fix what ever she had wrong, but this one is winning. Have redone a lot to make it easier for her like rail supports for bathroom and a bedside ramp to roll chair up to get her in bed, but now can't stand up more than a minute without me holding her up. Anyway, just needed suggestions from others that have had to make that choice? Thanks for your input.

jfkoc

I bought an electric for my husband and a twin for me ...both extra long....and stayed together in our bedroom. When 24/7 was needed I moved to another bedroom.

I now make up both as a King with separate fitted bottoms and enjoy the electric myself.

I suggest staying in the same room as long as possible.

Marie58

Spirit, welcome to the forum. If you can get enough sleep, I'd keep her in the same room. And separate beds may actually help you get more sleep. Have you considered Hospice? If she's approved, you may get a hospital bed provided for her. Blessings to you both.

jmlarue

Sounds to me like you wouldn't get restful sleep if you're not in the same bedroom. The downside to staying together might be, will the room be too crowded to accommodate another bed? You need to be mindful of the free space you'll need for navigating the wheelchair, the ramp, and possibly other helps like a Hoyer Lift in the future. My BFF chose to add the extra bed in the room to be close to her DH at night and it was a crowded, awkward arrangement that was near impossible to navigate. Respite caregivers complained about it, but she was really compelled to abandon the idea when 911 had to be called and it took the EMTs moving furniture to get her DH out of the room. That caused unnecessary delay in transporting him to the ER. Just something to consider.

spirit97x3

Marie58; She has Hospice nurse coming in weekly to do her vitals. They will supply the bed when needed. I've been holding off on it because up until this past week could handle her ok. Now her legs are starting to go and hard for me to hold her up and clean her at same time. Would take out our queen for hospital bed and put in twin for me. If too tight I would clear out some things to make room. Thanks for your input!

jfkoc

Hopice will want to get to both sides of the bed so allow for that space too.

spirit97x3

jfkoc; sounds like what I most likely will do? I've been her caregiver spouse 24/7/365 for the last 3 years and will most likely be it until the end. She is changing faster everyday towards stage 7. Mostly likely will be there by June? Hardest thing I deal with now is her suffering. Tears me up inside! Biggest thing that helps me is you guys and your post and my researching to see what comes next. This forum has helped me a lot. Don't really have anyone to talk to about what is going on with me or her.

ButterflyWings

Spirit - Welcome. I have nothing to add to the excellent responses from our forum mates except, I'm so sorry for your losses thus far and the road ahead in stage 7. 

We are not quite there, but not too far behind you and your LO. We got the bed delivered when DH first went on hospice but it was so quick, I had them set it up in the next bedroom and DH was too aware to move to a different room at that time. After a month I sent it back as it was just running up the electricity bill lol inflating the mattress 24/7 in an empty room. At the time, the noise piqued his curiosity throughout the night which sometimes prompted delusional thinking about who was and wasn't in our house etc., etc. 

Not sure what I will decide when the time comes that he really can't sleep in our regular bed anymore, but your question helps me learn what others have done. That's always helpful. I agree you should do what makes YOU feel best, with the hospice caregiving support's access to both sides of the bed, being a consideration. I hope all goes smoothly for you from here on out.

Ed1937

Spirit, I'd just like to welcome you to the forum. I'm sure you know it's a good place by now. Sorry for everything you're dealing with.

It sounds like as long as you have plenty of room, staying in the same room would suit you best. Just make sure you have room to walk around without tripping on things. I hope you find the best fit for you. If it doesn't work, maybe you can rethink your setup, and try separate rooms.

Joydean

Spirit, I have no information at this time. I do want to say I’m sorry you and your dear wife are going through this. Hope you get your room set up where it works best for both of you. Please come back and “talk “ to us as often as you can. Share what ever you feel like sharing or just express your on frustration. I think many call it venting. Just come back, all of us are going down the same horrible road! Prayers for you and your dear wife!

Gig Harbor

This is not totally appropriate as you plan to keep your wife at home until the end. I am planning to place my husband and I am glad we sleep in separate rooms as it will make that transition easier for him. He started to have wild dreams and would kick out and throw his arms across the bed. I would wake up getting kicked and hit. He would also get up to go to the bathroom at night and turn on the overhead light. I moved to another room so that I could sleep.

Lills

When my DH could no longer walk and needed much assistance standing up (stage 6E), hospice brought an extra long hospital bed.  I then turned my LR into a hospital room.  I had a lift chair, commode and hospital bed in very close proximity to each other.  He just needed to pivot--which I could help him do.  I just didn't want him away from the daily action.  

At first, I was afraid that he might try to get out of bed alone so I slept on the large sofa in the LR.  As time went on...I continued to sleep there so I could hear him and be near him.  I got used to it! 

**Too bad there isn't a trundle bed attached to a hospital bed.  There needs to be!

 DH died three weeks ago and I'm back in my own bedroom--but can't sleep.