I know I've enjoyed a fairly long "honeymoon" with this disease (for lack of a better term), but now, dh is becoming so needy I'm feeling like a caged animal - it's crushing. He needs to have me in his sight all the time and when I'm not, he wants to know where I am. He won't go to bed if I'm not right there with him and will hover around me until I get there, he's very uncomfortable if I go anywhere without him. At what stage does this behavior arrive, why, how lonhg will it last, and what comes next? What comes next will probably be worse and I'll be wondering what I was complaining about before.
DH and I were always very close, and did most things together, other than when I was at work. I liked to be with him a lot--we enjoyed each others company so much, and also, because he was so much older, I did not know how long he would live, and just wanted to maximize my time with him…and vice versa, I think. So he was always used to me being around. But now, in end-stage Alzheimers, he starts getting panicky in the evenings, and even with Seroquel, will start calling for me even if I am just in the next room. It can be maddening. He then apologizes, says, "I thought you left.", or, "I didn't know where you were.", and then a few minutes later, it is the same thing. Sometimes I just sit with him for awhile and read or twiddle my thumbs. Sometimes I just have to keep reinforcing that I am just right here in the kitchen cooking supper, or right here on my computer, or right here in the living room playing the piano (you would think he could figure that out)…it's kind of a process, with no one, pat, easy answer. I agree that their neediness makes you feel caged. I tell everyone that I'm incarcerated, or that it's like being in Alcatraz. I'm not sure what will come next or how long it will last. This is my 14th year of Alzheimers caregiving, and he became non-ambulatory two months ago, needs maximum assist to transfer, is incontinent at times, and sleeps a good part of the day even when he's been gotten up and given a shower and dressed. He doesn't seem to be having swallowing difficulties yet…I think that will be the next thing, as medical folks always assess for that.
If you reference the Fisher scale of AD stages, it says that the constant need to be near the caregiver usually occurs in stage 6. My husband has FTD but he does exhibit many of the symptoms of the various AD stages.
He went through the constant need to be with me in early stage 5, possibly late stage 4. Of course each person's symptoms are different but mothert if your husband needs to be with you all the time, he's probably somewhere in stage 5 or possibly stage 6. It does gets better in the sense that they stop being your shadow, but when they move on from that stage, then the losses really begin to show. I can tell you, as much as it annoyed me when it was happening, I'd give anything to go back to those days when he still understood most things, was reasonably independent and could still understand me and have some sort of conversation.
Oh man my hubs is right at this stage right now. I literally put in back in bed 7-8 times a night, or I sit with him until he settles. He follows me everywhere. He just always wants to be with me. We are finally moving him to a memory care facility next week, I am worried how he will react. But we have 2 teens at home, and I need to be there for them also.
samismom22, I just checked out your blog. What a beautiful family you and Curt have. I am so very sorry that all of you are so young and having to deal with this devastating disease! Sending cyber support and (((HUGS)))
That is precisely one of the main reasons I placed my husband. He had to know where I was all the time and I felt suffocated for lack of space. He still wants to be with me all the time but I just tell him I am doing the best that I can.
mothert, I think that he is afraid and keeping you in his sight makes him feel safe, I could see the fear in my DH's eyes and I am so grateful that I was able to reassure him and make him feel safe. It is also my only comfort now, knowing that.The memories from the 30 good years haven't come back but seem to have been overshadowed by "the raging years" (bunnys lamb) and the childlike, needy times that you describe now. It is very exhausting for you but you have already coped with so much worse than this. All the best.
I totally agree, Cassie. I believe it was fear my dh was going through and I helped him feel safe by being close where he could see me. I don't regret one second of my time spent with him. I had to place him in a nh this past Friday because I was hospitalized with pneumonia and did not have enough in home help to care for him. That has just ripped my heart out. I'm struggling with trying to recuperate at home and guilt of him not being here. He'd reached the stage of incontinent, trouble chewing and swallowing, having to be turned every 2 hrs. and I'm physically not able to do it right now.
Yes, I'm sure he feels safer having me in his sights - the poor man can't keep a thought for more than 30 seconds, that has to be pretty scary stuff. and I do feel so much compassion for my dear hubby. I know that I will look back on these days and maybe even think of them fondly (well, maybe not). I so miss the man I married, a real partner, someone who made me feel safe - heck, now I'm getting all teary-eyed. This is just getting started and I know it will get so much worse before he moves on to another and more difficult stage. And, I'm already feeling so smothered.
Another thing, my dh tells me how much he loves me about 50 times/day. Seriously, I get sick of hearing it. What's that all about? I think this is really common. Not that I don't want him to love me, I just don't need to hear it so often, it starts to have no meaning.
That is the hardest part mothert, losing the lovely men that we married and then having to watch them become more crackers by the minute! Sadly we can't go back in time so hang in there and I hope that your Dh calms down a bit soon. Best wishes.
Mothert, My husband's doctor told me that they are frightened most of the time. He said, patients often panic when they loss sight of you because they are afraid you might not return. My husband used to tell me over and over again that he loved me, and he thanked me many times a day. I really can't say that aspect of the disease bothered me too much. I used to think he repeated it because he was trying to tell me how much he appreciated all I did for him, but couldn't verbalize it any other way. Hang in there.
that was my greatest fear last month when I had surgery - that he would forget (which he did) where I was and panic. The notes I left helped a lot. They were full size sheets of paper with larger print telling him where I was and when I would be back. Where to go if he needed help.
mother the shadowing is a very harrowing experience to say the least. each person is different as we know but my DH started fairly early mid stage 5 and it lasted a long time. sorry. without the meds it exacerbates into the evening sundowning as it did for us. meds can help early and later pm. ask your dr if you can spread them out to cover the worse times of the day. my DH was so bad with the shadowing he walked around with binoculars stalking me even at 6ft away. it was terrifying to look up and see him watching me all day so closely. I would see him stalking me around corners and it just made me feel quite a lot of despair for us both. this part is never easy but it does eventually wear itself out. then like you say new things to worry over. til then find a way to work with the meds to ease his fears and your nerves. divvi
DH kept apologizing profusely last night, and saying that he didn't mean to be a bother, but that he felt so alone, and he was afraid. The sad fact is that he really is alone. He's outlived all his several siblings except one 91 year old sister, he's outlived his son (who never had children), and out of all his (even now) large extended family, only one niece even calls or sends a card. I don't think my daughter, s-i-l, and the three grands mean as much to him as his original family. (We're not Italian…lol…we'll never make the cut!) But anyway, just to show that the blue bird of happiness occasionally flies over our house--in the middle of all this neediness and sadness his sister called me to see how he was doing. I took a chance and put him on the phone (he can't always hear the caller, and he can't work the phone any more). Thank goodness he held the phone right and was able to hear her, and they had probably a five-minute conversation (cuckoo on his end) that seemed to make him feel much calmer. Talk about perfect timing.
divvi DH takes Celexa 40 mg in the morning when he gets up and Trazadone 50 mg before bed - we do go to bed late. He hasn't taken to stalking me yet, but he is acutely aware of my absences and when he sees me come back into sight, he always wants engagement or he will come to wherever I am and hover, which drives me crazy. I am a busy person, I only sit down in the evening to watch tv with him or at meals. I know he wants me to chat with him more, but he gets everything so mixed up and I find myself repeating everything over and over (I haven't yet mastered the art of simplifying the information) as he forgets it almost immediately but still wants to know. I can't even imagine how difficult this must be for him. The meds do keep him on an even keel, though, thankfully. I know he must be lonely and I am the only one he really wants, although he does love our housekeeper and his caregiver, Katie - he seems to be happy when Katie is here and I can safely leave him with her for the day. He also loves hearing from his girls even if he doesn't rememeber who he's talking to - I have to remind them to call their dad (sad). It doesn't take much to make him happy these days.
He's been moving into this "clingy" stage for a while and it's heating up more lately which is why I'm feeling panicky. I have this same reaction with the advance of each new stage and loss he suffers. Just when I think I've got this down, along comes the next stage of this awful disease, and the grief and fear in me starts all over again - takes me a while to get my act back together. I know he was in MCI by 2006 and after his diagnosis in 2010, his losses have become more profound. I know that this stage signals the beginning of the end and that can take several years and it gets much, much harder. I have learned to take one day at a time, though, and have stopped thinking about the future - it's still a long way off.
Add my husband to the hovering group; he is afraid for me to leave the house without him. We are almost literally joined at the hip. If I go to the bathroom, he'll come in and rest on the bed.
Getting him to accept home help has been a challenge, but the agency chose an excellent match for him, and I am able to escape for 4 hours once a week.
My DH is my shadow. If he is at. Family members so I can have a break, he is calling me to come and get him. I can be upstairs, he saw me go up, he will yell "where are you". If we go to the store he is directly behind me. But if I am in line he stands back a few feet. People will ask him if he needs help. They think he is by himself. I always tell him to stand by me. He says he dis not want to crowd me. But walking he is right behind me. I have turned around and almost fallen down bumping into him.