I just got back this afternoon from 3½ days of respite away. Very nice. I am unbelievably fortunate in my choice of sisters-in-law. (Well, I guess I actually chose her brother, but that Helen came as part of the family package is a stroke of luck that not every Alz spouse has.) Jeff is fine, or at least as fine as he was before I left, and Helen claims to have gotten some sleep. (I slept beautifully in New Orleans myself.)
Helen was struck by how exhausting it was for her to have to be here with Jeff 'round the clock, and help him with EVERYTHING. I get high praise from her for this, and who among us doesn't need that?
Jeff has been changing rapidly recently. His mind is truly going now, there is no question. Whereas, over the past decade, he has been declining cognitively, and fading in every way, in the past couple of months he has progressed from mostly PCA to delusions, confusion, and those eyes--which before had lost their brightness--are now the utter void of AD. I would say it's heartbreaking, but you know...the heart is already broken and we know we're never going to get them back.
At my sister-in-law's prompting, we talked about placement. She feels like he doesn't have a lot of time left. I pointed out that even bad phases can plateau. We both know that. Anyway...it's not time now, but it's time for me to seriously look.
One take-away point I got from visiting the OTHERWISE very nice facility which discourages family from hanging around, is that in looking, I must give equal weight to quality of care and family access. While we may be nearing a point where his day to day care needs can be turned over to staff, and where he may be as comfortable there as here...it is equally true that I (and all his family and friends) must have as much access as we want. Yes, I want to resume a life of sorts, but not at the cost of not remaining the primary person in charge of his comfort.
I went in to 2012, and my year of being 50, knowing it would be different and bring changes. Here we go.
Em-I am so sorry that it has come to this. The class I just finished claimed that behind those vacant eyes our loved ones still live. I have a tough time accepting this-but keep trying to include Jeff in your conversation. If just a small spark gets in it's worth it.
Emily, I am glad you had a nice and I am sure a well deserved chance to relax also. I have had a couple of NH contact me about placing Kathryn. I explained to them that I was only looking into the future and was not ready at that time. One did give me some good advice. They told me they have limited space and that I should go ahead and put her on the list and if her name came up I could always pass and allow it to go to the next person on the list and Kathry would still remain on the list for the next opening. You may want to see if that would be true with the homes where you live. This would allow you to have something in place should you decide to do it and also allow you to wait until you are ready and at the same time be on a list.
Emily, I am glad to hear you had a good time on your mini vacation and got some much needed rest. Such a blessing your SIL is. It is difficult when we admit to ourselves the time has come to consider placement. Touring the facilities was really hard for me. I knew I wasn't ready then, but knew also one day it might be my only option. I was glad I took the time and did research as it allowed me to get Lynn into my first choice. They are very family orientated, and I naively thought they all would be. I can't imagine any facility telling me I couldn't see Lynn anytime I wanted! That would be a deal breaker for sure.
I too use to wonder if our loved ones are still “there” behind that blank stare. Now I know they are. Anyone who has seen our before and after videos can see the dramatic changes in Lynn. Clearly he didn’t re-learn how to talk, make eye contact, read, express himself….. He WAS in there all along, just desperately lost and unable to communicate with me.
There is just too much proof for me to doubt it. Not just Lynn, but coma patients, etc etc. Personally, I think when they can no longer express themselves, when they seem so lost to us, THAT is when they need our love, to hear our words of love, and feel the comfort of our touch the most……..
For many years I volunteered with special needs children,and yes, behind those blank eyes there is a person. I always treated them and spoke to them as if they understood and when you get that little spark or just a movement you know somehow they understand.My work with them and the years I spent as a NH volunteer really helped me to care for DH.Little dis I know at the time.
You are 50? Forgive me if I had not noticed that before. I am 52 as is H.
I'm not really sure what to say. It has been a very challenging week, some events about which I have not been able to post even here.
I'm glad it was a good time. On another thread I posted to you to have a good trip to LasVegas and I don't know where that came from except for my own excuse of confusion and exhaustion.
I understand that blank look. All that stuff was going on in there and now it is just in another dimension. I sometimes, okay, often, think there is something I can say to break throught that and for me there is nothing.
Well abby, there IS a Harrah's casino in New Orleans, and I walked by it, but definitely not by favorite part of town, or my idea of recreation!
Yes, I know we have to give them the benefit of the doubt, and love whatever remains behind those eyes. No question about that. It's just a disconcerting sign of progression to see how different things are looking these days.
But, yipes... I KNOW that with me having been gone for three days, and Jeff's sister having stayed with him instead, we're bound to have some confusion.
But...wow...he's suddenly hitting some AD milestones that I thought were quite a ways off. This morning he's been talking about me in the third person, wondering if "Emily Gillespie" (my maiden name) is ok. Then he looked right at me and asked "are you Emily Gillespie?"
I imagine that with me back home and Helen on her way back to New York, things might normalize.
I'm going to start another related thread, soliciting thoughts about how others have managed the constant worrying.
I beg your pardon for being direct but I have noticed for a few months now a change in your demenour which while not obvious made me believe you are feeling strained and stretched in ways you were not before.
While there are many considerations that go through our minds in these events the last one on the list is always the same. Us.
You sound the same as me in some ways and like all of us I have no doubt that you are looking for some definitive sign. I suspect though that only a real crisis provides that and that is very unlikely.
I have recently gone through this and I believe there is a very high degree of probability that whether you put Jeff into care now, or next year, or five years from now - your experience of it and your feelings about it will be virtually the same.
This next period will be difficult because you have conceived the reality but seek evidence and with the slowness of Jeff's condition it is very likely there will be none deemed sufficient. It is no suprise that the tonality of your SIL and your comments are from different planets where she was aware of the exhaustion of doing this for three days and you say this like some article in someone else's newspaper; but, do not portray how exhausting this is.
When we are good people the answer to when we have given enough of honour, duty, and love is always the same. Never. It must be some other perception that puts us there. I never listened to the professionals around me (there were many up here in socialized Canada because I don't pay for any of them so we had a doctor, a geriatric specialist, a case worker, an AD rep from the society, a respite director, a personal support worker, their supervisor, and a social worker all involved) who to a person said they didn't know how I did it and it is only now when I listen to the staff of eight in the locked up section of the residence showing me what a handful she is for them that I realize it was ok to do this [see, I'm still justifying myself].
For me the moment came when the respite director told me no NH would take her in her present condition and I suddenly started saying "I can't do this anymore" and inititated a crisis placement. She was right in that 5 of the 8 homes with proper facilities who read her detailed file, turned us down. (she bites sometimes)
If I may, consider opening up to Jeff's sister who sounds like she has a decent head and heart and ask her if she would be willing to talk about this and help decide when it is alright to place her brother into care. If you are fortunate enough to have her open up and share this decision with you - it may help you to decide what is to be done and when.
On re-reading what I've written, I want to add that I don't perceive the immediacy as the issue; but, the resolution of it in itself into a picture I can accept.
me too Wolf, not as far along as our dear emily in the process, but words of wisdom from you all, from a place where people come that love their spouses dearly, is priceless.