The last few times I visited DH in the nursing home, it didn't seem like he knew who I was. He doesn't respond when I say "I love you" like he had been. When I ask him who I am, he doesn't respond. At least he didn't cry the last time I was there. He seemed too "out of it" for that. Maybe he's on a downward spiral again, I don't know. Last year at this time, he quickly started going downhill. It wasn't that long ago that he seemed to remember some things, said the name of our dog, who died 1 1/2 years ago, and started crying, even said mine and his names suddenly, out of the blue, like he was introducing us to someone.
I wonder sometimes if there's any point in going, but I know I need to look in on him. I can't just abandon him, nor would I want to. But it's hard to just sit there, talking about the kids, etc. When he's in "talking" mode, he just goes on and on, not saying anyting that I understand. I end up talking over him. I don't think he understands what I'm saying. If feels so useless.
This is the first time I'm starting to feel like he's really "gone". If he doesn't know me, then I'm "gone" for him. I've never felt so alone. A house full of noisy boys, and I still feel alone so much of the time. It's like I'm in a dark hole, and I look up and the boys are there, keeping me from slipping away. But I'm still in the hole and can't get out. Does that make sense?
Sometimes, I feel like I'm going through the stages of grief all at once, one minute I'm angry, next I'm depressed, sometimes I just want to believe he'll get up and walk in the door, he'll be "whole" again. Everything but acceptance. I can't get to that point.
Sorry for the "pity party". I just needed to vent.
Kelly, I'm so very sorry for what is happening to you and him. It must be so hard on you - more so than him, I think. Are you on any kind of meds? You might talk to your doctor about that. I certainly can understand the depression and anger, but maybe you need something to level you out??
Arms are around you and I do hope you will find some peace soon.
Sounds to me like all of your emotions are perfectly normal, given the circumstances. Those who have been where you are will hopefully be along to give you more sage advice than I, but you have every right to feel the way you do, and this is the place to vent about it for sure.
You ARE going through a grieving process, which at some point, will take you to acceptance.
Kelly, so sorry this is happening; I can't advise you, not having been there, but it sounds very hard indeed and it is not at all strange for you to be going through all the phases of grief. I wish you strength.
well my lo acts somedays almost normal,then she'll ask if I'm going to spend the night or I have to show her pictures of wedding so she knows we're married,Ibelieve what your going thru is completely nomal,my mom an dad were both in rest home for the last years of their lives an my dad I think always knew me but he sure got screwed up with other stuff,my mom I believe always knew who I was an she passed away at 99,I also think the meds they are given messes them up,some days ok others in another world
Kelly, I'm sorry he has reached that point. I empathize with you and have to let you know it is going to continue the downward spiral. You can't be ready for it, even when you know it is coming. My husband just reached the point where there is no expression at all in the eyes and it is almost impossible to get him to even say "yes" these last two days.
I feel so bad especially for those of you who are younger to be going through all this. My husband and I are both 79 and his decline since diagnosis 9 years ago has been so gradual that it is almost imperceptible from year to year. I also had the “advantage” of watching my MIL go through the same process so I have some idea of what to expect. My children and grandchildren are all aware of where we are and are helpful. Reading on this site makes me aware of how fortunate I am—even in this bad situation.
Kelly - is there a social room where they take the residents to? In the VA facility my FIL is in, they take them to a social room usually placing them around a table usually with something going on even though they probably do not comprehend, and the wives/family usually sit and visit doing needlepoint or whatever. Their husbands do not know them, speak or anything and like you sitting in a room just starring would be hard. They develop friendships that help them thru the journey - family. When it comes time for hb to enter one, I hope it is set up the same way.
Thank you all. It helps so much to just vent to others who know what it's like.
Charlotte: DH does sit in a room with other residents all around him, but he seems oblivious to anyone in his area. He can't carry on a conversation or even really respond to anything that is said to him. He had been able to respond sort of mechanically, saying "I love you" when I say it in his face, or "Hi, how are you" when someone would greet him in a loud voice. But now, he seems to be losing that too.
I do think that medication has something to do with his alertness, although they've cut back on the meds since I insisted on it a few weeks ago, when I would visit sometimes and hardly be able to wake him up. Now he gets his meds at bedtime and just an antidepressant in the morning.
I hope he's not starting another downward spiral; if so, I can't imagine him making it through the winter.
The only positive thing is that at least he's not crying. He had been doing that a lot when I visited. All of a sudden, he'd just start crying. Maybe that's worse than not knowing who I am. I'm not sure.
Kelly, what a sad situation. It does sound like he's gradually slipping away, but at least from what you say he's not unhappy. That's a blessing. Sending lots of (((hugs))) to you and your boys.
So Sorry you are going through this heartache: My heart goes out to those of you that still have young children to raise. We all know what the end results are with this Monster of a Disease, but, we are never ready for it. Hugs to you Kelly and the boys.
Kelly - just wondering...my DH likes to have his head massaged and also lotion on his feet and hands...the "touch" seems to be good therapy for him...perhaps something like that might bring your DH some comfort and connection with you again...just a thought. ((((hugs to you!!))))
Dearest Kelly: Sadly enough, I know how you feel. I wanted to dig a hole in the floor, crawl in and pull the carpet up over me. Your feelings are natural. Can he sit up, can you sit next to him, close, hold his hand? I used to share a sweet, rest my head on his shoulder. Dear Kelly, he may not fully respond, but he feels your love, he knows you're there. But time means nothing to him, so keep your visits short for your own well-being. You're doing the best that you can, you can't do more. Feel that we're with you. Betty
(((hugs))) Kelly ,so sorry about your Dh decline.It must be terribly hard to have a Dh with early onset .His crying must really upset you .My Dh is in a care facility and a few times he has thought I was his Mother ,if he forgot me altogether I dont think I would visit as often as long as I know he is being well cared for thats the main thing .You have a full plate caring for your home and family and their needs and yours should be first in this situation . Rosie
Kelly, it is time to ask about hospice and about grief counseling. Even if it is too early for hospice for him, or if you feel that the nursing home is handling things well, they are the ones who generally do grief counseling.
I will try to make more physical contact, holding his hand, etc. It's helpful to realize that he doesn't really experience the passing of time. I wonder sometimes if my visits are too short. His brother stays with him for hours, I honestly don't know how he does that. But I think even regular brief visits are good.
Starling: Do you know if they would do grief counseling even if DH doesn't yet qualify for hospice? Do you know if they would come to our home to do it or would we need to go there? I am especially interested in this for the boys. I know they are grieving, each in their own way.
kelly, I don't have the answers to any of your questions, but I've read about someone (not a personal friend or acquaintance) who received grief counseling after an accidental death in the family for a hospice group in their area. The best you can do is ask.