Placed my dh about 2 weeks ago; I am wondering how long it takes for that to seem "normal". Any sense of relief I have from getting the work of the 24/7 caregiving off my shoulders is tempered by missing his presence. Of course, I visit him daily and oversee his care, but the change in my role is a big adjustment.
Dear Marilyn, it never seems normal, just as seeing the vacant look came stealing over their faces and the light leaving their eyes never seems normal. It isn't normal. Only when they die, and the memories of that longer period of their lives when they were normal returns in memories do you feel yourself coming back to normal. Or so it is for me.
Dear Marilyn, I agree with mary, I doubt it will ever seem normal to you. Although Rich was in the aLF only 2 weeks, I missed his presence in the house so much. Going to visit everyday made me feel even lonlier because I had to say goodbye and leave him there. That's one of the reasons I've fought so hard to have him at home. Maybe it is selfish of me but I am willing to put up with the challenges of a live-in aide to have him with me. My thoughts are always with you and Steve. I believe you will adjust to the ew routine but I doubt it will feel normal.
dont think theres anything normal about this disease or the process we must go thru. i know its got to be difficult not having them around. ((marilyn))
Marilyn it was the quietness of the house that drove me nuts. It's seeing something on the floor and knowing it will stay there until YOU pick it up. There is nothing normal about the process. In time you will adjust-trust me.
I agree completely blue daze*. It's knowing everything that must be done,is now yours to do. I've started to get use to the quiet as my DH was never a big talker. I placed him 8 months ago and nothing prepares you for the loneliness even though I know I did what was best for him,that doesn't mean I have to like it. Take it one day at a time is the best advice I can give you. That's what I try to do. Ruth
I can't offer any advice since my husband is still in early/mid stage. My heart goes out to you. Several of my male friends who have lost their spouses to cancer have moved on and are now engaged. I think where you are at is perhaps the most difficult stage of this journey. My thought are with you & Steve.
Ok, I guess I didn't really mean normal, but as ehamilton said, get easier. Right now I'm in limbo--haven't reclaimed the old life I gave up yet, because it's been so soon. However, I'm on my first trip in at least 7 years without having the "double workload" and although I miss him, I have to admit, it is much less hassle.
I think being able to get away must help some with "our transitions". I wasn't able to, and even now I can't. I am so glad you are able to get away and enjoy yourself some!!! Just don't be shocked if you feel hit by a 2X4 when you come back home to an empty house. I still feel that way now and again even now. I think I am the odd one out in our family here, as I just don't think about the future or getting my old life back. I know I can never get my life back as it was..... It just isn't possible. Life just has a way of happening, whether we want it to or not. I figure I will just ride the tide and see where I land...... I hope you are having a fantastic time!! :)
Just read on the Oct thread that Wolf is struggling with the idea of placing his wife. Thought I'd give an update--it has been about 2 mos now since I placed Steve.
First: he is doing fine. Compliant, no behavior problems, they all love him.
Because of the above, I am doing well too. I am satisfied with the quality of care (which was a big concern of mine); I visit him about 4 times a week and my brother goes on Sundays to give me a break. I examine his whole body each time and have pointed out things like a rash (allergy), cut his nails, am going to ask on Monday for more attention to be given to brushing his teeth. I've also pointed out some housekeeping issues in his bathroom. The psychiatrist has already reduced two of the meds he was put on at the geripsych unit and he seems more alert and is happy. (I am referring to Steve, not the psychiatrist!)
I have had zero guilt pangs. Although I couldn't achieve my goal of keeping him home for the duration, I accept that it just wasn't practical. He needs to be in an environment where he can be frequently monitored by professionals. I have been catching up on things around the house, been exercising more, have gone out with friends/family to movies, a museum and play in DC, restaurants, joined a women's organization, etc. Took two trips; the freedom is great. I've stepped up volunteering at the Alzheimer's Association; yesterday, driving in the car I felt an unfamiliar sensation. Then I realized--it was happiness! Just having the flexibility to come and go as I please, not always watching the clock, etc.
I think I may have had less of an emotional struggle with placement than some others, mostly because my hb's behaviors at home were very challenging and I've been told I kept him at home for about 2 years longer than many families would have. I know I gave it my all and am gratified that he has progressed to the point where he doesn't know where he is living.
marilyn it is good to hear that you are not second guessing yourself as we all do too much. It is great that your dh is doing so good. As long as you stay on top of the caregivers at the home he will do fine. I am a very proactive caregiver and expect nothing less from others giving care to my loved ones. May your Higher Power bless and keep both you and Steve at this time.......
I am wondering what type of place is he at? A regular nursing home or one that deals with this type of disease? I am thinking when DW does not know where she is, that may be a good time to place her too.
I am ttt-ing this, because it took a bit of searching for me to locate it, but I remember when Marilyn started this thread.
Now I'm wondering the exact same thing, but can benefit from what's already been posted. As speedy as Jeff's decline to the point of placement was, I'm glad to say, he seems to assume he's home, or at least he is as unaware of his location there as he is at home. The visiting doc came to do an initial check when we were outside in the courtyard in rockers this morning. While doing a brief assessment, the doc asked Jeff where he was--i.e...where is this place? Jeff looked vaguely perplexed or annoyed by the question, and replied "on the front porch." (Where at home we also have rockers.)
This was the answer I would hope he would give, because it confirmed my observation that he'd already lost his ability to differentiate between home and another comfortable homey environment before he moved.
As for when I will "normalize," or figure out how the heck to begin to have a life again...guess I'd better just be patient and let life slowly begin to fill in the blanks. Yes, there's a big blank space in the house. The dog was well aware last night too, I could tell.
Emily--I am so glad that Jeff gave that answer. For me, knowing that Steve never differentiated between home/psych ward/ALF certainly contributed to my peace of mind!
Thought I would check in again on this re my adjustment to Steve's placement. By now, it does seem "normal". He has done wonderfully well in the ALF, much of a contrast to what I had feared would happen.
I've been extremely busy playing catch-up with things I'd put off during 6-plus years of caregiving. Doctors and dental appointments, buying cemetery plots and planning our funerals (ugh), some financial stuff, took two more trips and planning another for this summer. I have come to realize that the at home caregiving was so confining, I think I was suffering more than I had even realized. Perhaps because his dx was preceded by a period where I took care of my parents for about 5 years, I've never felt that I was "retired". Now I can do more reading, more exercising, just little things that there was never time for. Even watching a TV program that Steve would never have been able to tolerate seems special.
Regarding social life, it's an interesting thing. Receiving many more invitations now that I'm perceived as alone. What they don't realize is that I actually needed the company and outlet more when I was actively caregiving, but I'm glad that people are responding to my "separated" status.
Confining, yes. Jeff was able for the longest time to accompany me many places, so lunch out was a nearly daily occurrence. Lunch + a quick trip to the grocery store. It was slow, and I didn't try to add in extra stops, but we could do that until quite recently. And then the rest of the time I was home. But it was not a productive, creative at-home time...more of an on-guard, hard to focus, at-home time. But I am in agreement that when you've been caregiver for many years, you don't realize how much you don't do (apart from caregiving,) until suddenly (like now) you have time to stop and think..."what do people DO anyway?"