Limbo(1)

Gig Harbor

Having my husband in memory care makes me feel like I am in limbo. I visit twice a week but usually only stay an hour. If he is with his friends he doesn’t seem particularly happy to see me. Yesterday he was very confused. He had been talking to imaginary people and when I arrived it seemed to agitate him. I could not get him to go for a walk and I felt uncomfortable about taking him out for a drive. I was afraid he would not want to get out of the car when we got back. I honestly can’t imagine him living there for years but it is the same as being confined in our house since he couldn’t go outside alone nor did he want to. I am surprised that I don’t have unlimited energy to do things around the house or to go places. I thought that having freedom would automatically make that happen. This disease just creates a sadness that just colors every part of my life. I am still very grateful though for the chance I have to have a normal life while he is safe doing basically what he would be doing at home.

JoseyWales

Gig, I'm experiencing the same limbo. I was thinking just the exact same thing the other day. In a way it's like we're widows, but not. I can't grieve his loss, and I don't really have him here. It's hard to move on, and I don't know how to move on or if it's even ok to do that. (Editing this to add that yes, I know intellectually that it's ok to move on!)

I'm on summer vacation from teaching, and expected this to be the summer that I got things done and started a new life. Instead I find myself working on things that don't really matter and wandering around. I can't focus. I don't want to go places, I don't want to start any projects. I also can't sleep that well, and wake up worrying in the middle of the night.

I think DH will survive years in his placement, because he's young and physically healthy. I have a long stretch of this ahead.

Ed1937

Gig, I understand. When I placed my wife, I had absolutely no interest in doing anything. But I haven't had any interest in doing anything for quite some time. Still don't. It will come back, but slowly. I think it's just a long grieving period. And I think we all go through it.

Do you think it might be a good idea to not visit for a week or two?

M1

Gig and Josey, I feel the same way and I'm not sure it's going to change.  I try to keep busy, and the farm has some "musts," but it's a purgatory all its own.  I find myself wishing for her death or for a worsening of her condition (so I could at least visit).  Feels awful to say it out loud but it's very true.

Rick4407

 Hello, the respondents so far on this post are members whose posts I have been reading and following for a long time.  The limbo question of “what’s next” is a challenging one for me.  I think about what’s next on a daily if not hourly basis.  My professional career was always looking ahead and planning for the future.  My DW is late stage 6 with a foot into 7.   This will probably all end for me in a few months or a year.   There is no preparation, there is no planning for me to do, no anticipation or dread of what's next.  It is a very hollow feeling to have nothing to look forward to or to plan for.   Rick

Gig Harbor

Well now I don’t feel alone. We all have the feeling of lethargy and sadness. Sometimes I feel like I am slogging thru quicksand. I have cut my visiting down to two days a week and he has no idea of when I was last there. I had envisioned taking him out to parks and coffee shops but so far have not done that and now that the weather is so hot I will wait. I am just not sure how he will do. It is basically living two lives. The alternative would be to have him at home and really no happier than he is now and I would be a prisoner in the house except for my 12 hours of caregiving I paid for each week. Some on other sites have taken offense to my saying I felt like a prisoner but honestly I felt that way. You can love someone a lot and still be unhappy in their presence. I just couldn’t face devoting my every waking second to caring for his every need and ignoring my own. At least now I can keep myself busy with projects and maintainance and that was not possible before. There is just no good answer.

Battlebuddie

  Battle Buddy here. I too am doing the Limbo Dance ( How low can you go!)

It’s so hard to be in limbo. I find not being able to plan the hardest part of the disease in some ways. Seems to effect everything. My son has been dating a nice girl. Wants to marry her or at least get engaged. How do we throw all that in the mix of my husband on Hospice? We are almost to a year on Hospice. It’s the ultimate limbo state. Couldn’t even count on that to at least say - ok we are down to 6 months or less. So we all are just in a holding pattern in our little planes just waiting for some sign that is time to start out decent and land this Alz plane.

    As far as the inertia , that resonates with me too. I have all kinds of ideas, but getting things done is hard. I find I have to do small things because the big projects just seem too big. I find myself doing my caregiving duties and then coming out in the living room and just turning on some tv and sitting while I try to figure out my life. I don’t think I’m wasting time but I think caregiving just takes so much emotional effort that there needs tp be some mindless recovery time. 

    Thanks to everyone who posted. I was kind of feeling bad about my lack of drive and such. It’s good to be reminded that we are running a marathon here and it takes a lot of work. So what if my “ self care” includes Chicago Med episodes I’ve already seen? 

    

    

Stuck in the middle

Helperheart, you are so tired you don't remember being rested.  If you weren't, you would consider your son dating a nice girl a blessing, not another burden.  It will get better, believe me.

Beachfan

Having DH in Memory Care since November has not caused me to feel as though I’m in limbo; rather I feel like I’m no longer on high alert 24 hours a day.  Several times every day a thought crosses my mind, about something I could never do last year at this time. (Activities as mundane as sitting leisurely on the porch with a cup of coffee, running 3 or 4 errands in and out of the car on a hot day, painting a closet, going to the beach- - nothing earth shattering, just everyday stuff that I could no longer do with ease.) And yes, I feel like I’m a widow, but I’m not.  I think because DH is so progressed in this disease, I had no choice but to pick up the pieces and carry on once he was placed.  He doesn’t know me, he doesn’t miss me, there is no interaction or reaction when I visit him; I have no alternative but to move on.  

I’m not traveling the world, socializing, shopping, or pursuing new hobbies or projects.  I’m just enjoying life, alone but not lonely, and no longer walking on eggshells waiting for the other shoe to drop.  Maybe this is limbo- -?

Gig Harbor

BeachFan I like your description of life now much better than the way I described mine. We are doing the same things but you put such a positive spin on it that it made me happy to read it. Thank you for that.

jfkoc

Limbo/purgatory....I was able to bypass but have often thought that that phase must be beyond difficult. Fatigue, frustraion, grief, depression.... all seem to be componants. Add to that the ever present responsibility. I don't know if I would have been up to the task.

billS

It has been exactly 6 months since I placed my wife, and I do feel a bit in limbo. I visit her every other day, usually for about an hour. I approach the facility with sadness, that she has to be there and that this disease has stolen so much from her. But once inside I find her content, cheerful even, and I take time to chat up the staff and other residents. I always feel like staying engaged and monitoring her care ensures staff will be more attentive to her, and that puts me more at ease.

Then on the way out I feel this strange mixture of sadness and relief, relief that she is doing so well and is well cared for and safe, and relief that I can go home and work on projects or just relax. The sadness is always there, but I try to keep it in the background by engaging with friends, hobbies and chores. Luckily I have plenty of each. One chore I really need to get started on is clearing out my wife's things that she will never need again: tons of paperwork, loads of clothes, books, etc. That's a tough one because of all the reminders of what her life once was.

Joe C.

Gig, I understand your feelings, after I placed DW I felt lost in my own home and the routine I had followed for 4 years suddenly didn’t exist anymore. For me, staying home was and still is to some extend a lonely/depressing existence. Initially I lacked the energy to do things inside my home like cooking & cleaning and lacked the self confidence to go out on my own to try an socialize but I would go out if invited by others. Finally I made the decision that I just had to start doing stuff/anything. Initially I made a commitment to do ONE thing for myself each day and with time things are starting to get better, except for the house cleaning, it’s beginning to look like a bachelor’s pad around here.