I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. It discusses a difficult time I had this past Saturday night. As I said in the blog, I do believe it is one of those that defines this website - "a place where emotions that are unique to Alzheimer Spouses can be laid out in bare, unsweetened, raw truth."
Please post comments here. Do you feel the loss as I described in the blog?
I agree and think that the nature of the disease is also a source of the loniness that we feel. If he were in a hospital/nursing home for any other reason than dementia just imagine the overwhelming support you would have from friends and family. Alzheimer's and every other dementia related disease is the modern day leprosy of biblical times. You are simply cut off from society as you knew it because there is such fear and stigma attached to dementia. The pain and loneliness of the physical separation would be the same. But, it sure would be nice if your friends and family reached out to offer support, ocassional meals, small blocks of time for respite, pharmacy or grocery store runs etc... So many times I felt resentment in my Sunday School class as the discussion revolved around "what can we do for so and so as they deal with this diagnosis/treatment plan". I wanted to literally scream...does anyone actually see me here??? Oh well...my own pity party I guess!
Yes Joan, great minds think alike, and you pretty much summed up word for word how I feel. Larry has been gone six months today, and also we are coming up on his birthday--he would have been 90 on March 7. Despite the 25 year age difference, we liked to live the same way and we liked to live with each other. I miss the day-to-day ordinary things so much--I find myself reflecting back on the happiest of years before the Alzheimers decline started to be evident. This past weekend I allowed myself to just stay in the house and vegetate…yes, wallowing in misery, I suppose…the memories just seemed to come in waves. It snowed all day from morning to night yesterday, and gave me an excuse to stay in and just mope. I actually went on a Star Trek marathon on Netflix, just sitting and watching the Star Trek films in order. Entertaining, and I suppose I could have been doing worse things…but it was really because I was missing him and our whole life together, our whole lifestyle…obviously I need to really pull myself together and build up something to take its place. I do get that intellectually, but emotionally sometimes I just can't get a handle on it. I'm not crying and weeping and wailing like at first--where it could hit very unexpectedly--but find that so often I just don't care about anything, and things like washing my hair just seem like too much trouble…like who cares, why bother, etc. So yes…emotional memory. Very emotional.
I would like all to know that I do have great sympathy for each of you as you hit the various mile posts of sadness with this disease, including the final one. For the most part I do not post those sympathies because in my case it would be hypocritical. I always feel a certain envy when one of you is free and that is certainly not the way most of you are feeling.
It's funny, I have felt that lonliness for a while. But now that I am looking at placing DH middle of this month, it is magnified. I am going through his CDs to take some with him. He could tell you any song title and who sang it. Not now. He asked me where I got all of the CDs. He didn't realize they were his. Small no large fortune in music. He was excited they were his. Already at night I am thinking how am I going to handle him not being here, even though he really hasn't been here for the past 6 years. Note to self do not listen to John Denver and Simon and Garfinkel or a lot more of the CDS!
Injail, you are not the only one who feels envy when others hit milestones in this disease. Everytime someone is placed or dies I wish it were my husband, not theirs. Even more strongly when it is a couple that had a good marriage.
Joan, we all need to allow ourselves to mourn the loses along the way. If we don't the grief will be overwhelming later.
Joan..you are saying exactly how I feel. The feeling of completeness, security...has been replaced by a cold emptiness. My husband has been in nursing home now for two months and it seems like forever. That completeness is forever stolen from us. I am so sad most of the time that I just feel numb. When I do feel it overwhelms me. I agree with you...it would have been easier had he just died. The closure would be there. But I feel like we have a double whammy because the pain is so great and we know there is more to come. The silent torture in my husband's brain and body and the torture that I feel knowing that we are forever separated. I know that he will never come home and I, too, lay in the bed in our bedroom and wonder why?
Joan--As many have said in the past, we ride a roller coaster when it comes to our emotions. My 59 year old DH has been in a facility for a little over 2 years and I still have times of weeping, having to walk out of there and leave him . I grieve for his loneliness (even though I can't tell if he can comprehend it), and for mine. Sometimes I want to scoop him up and take him home, but it just is not possible. His status: DH is in a wheel chair, has been moved to pureed foods, hasn't talked intelligibly for a couple of years--and speaks gibberish non-stop when he's awake...in addition to a bunch of other things. But I still feel the bond that we shared, and he is still so present in my mind throughout the day. I've found that most people just can't deal with visiting him, or asking about him. To many in my extended family I feel that they think of him as already gone. Thank goodness my adult children share the visits, and my grandchildren too sometimes. I 've only posted a couple of times here, and have not been able to, for over a year, because I just couldn't bring myself to--just struggling with so much emotionally. But I have kept up with the site and message boards at times....Thank you Joan, and everyone else for being here and being so faithful.
Joan, Your blog post brought tears to my eyes. Everywhere I go in my house I see projects that he was working on, and that we were working on together. Every time I enter the house, I still can't believe he's not here. The separation is awful, much too painful to describe, although you describe it very well on this site. I feel like the world is ending. My therapist and everyone else tells me I'm so young (I'm 57) and I have a lot of life ahead of me. But I don't feel that way. I feel I will die when he does. I don't even want to think about life after him.
My husband has been in placement for six months now, and I have just started to realize he will never live here again. It's my house now, not ours. The thought of that is almost more than I can bear. I agree with dellmc53 that we have a double whammy - we suffer so much from the loss of our loved ones in this life, and then will suffer when they die. Once again I have to say that without this website and the sharing of those going through the same terrible thing, I don't think I would make it through. Thank you all for being here.
joni, its so very difficult to have to live apart. I had a hard time just having mine in the hospital bed but in the same room. after being one for so long, its just plain devastating to be apart. I know the feeling of my house, not ours. my DH passed just 3 mos ago and the living totally alone is very frightful and depressing. losing them twice is how it is. once emotionally in mind and once physically in body and soul. try to find some bit of comfort knowing you are suffering the aloneness to make his life a bit better in care and skills. divvi*
Divvi, I am so sorry. I haven't come to the website for some time and I didn't know about your loss. It is a difficult, heartbreaking time. Gord passed away over 3 years ago and I am still in the process of slowly getting rid of his things. I feel as if I am trying to erase him.
I came here tonight because I have been crying almost nonstop the last couple of days. You say it all so well. I don't think I would have made it through these years since diagnosis without this site to come to, for the knowledge & wisdom, but also for the validation that what I was experiencing was real, and I hadn't just lost my mind, that it came with the territory, or just knowing that someone else survived it. At least I know feeling isolated, lethargic or overwhelmed aren't because there is something wrong with me. Or lonely, or just plain wrong. You are so right about it being the modern day leprosy. I cringe at the things people say to me. Just yesterday in the NH some stranger started asking in front of him why was he there, and why shouldn't someone his age be at home as she kept her mother at home (DH illness became apparent 10 yrs ago when he was 58). Like his friends who kept saying if I just would bring him home and take care of him. I finally told one of them they were welcome to do so. And of course the endless helpful folks that send me videos and can't understand why I would let my DH wallow in this disease when I could have already cured him with turmeric and coconut oil (I try to explain, there is NO cure - if there were do you really think all these people would be suffering)? Of course we tried everything! Both of us missed the whole last decade - for me 54 - 64 so far. I can't cope with getting rid of much of his stuff yet at all. And have almost no energy to do anything but the very basics of my job and seeing him in the NH. And sleeping is still impossible most of the time. Days like this I have to let the tears thru me- I know that riding this grief is like a wave, and I have to allow myself to feel it when I can, let it out. There is a book someone recommended to me about anticipatory grief - that is what this grief that goes on & on without resolution is. Anyway, thank you Joan for providing this site and expressing what we all feel that needs acknowledging, as well as everyone else who has come before and behind me and shared. It helps keep me going.
Hang in there, mariposa.I am dropping you the rope--tie a knot on the end and hang on.
People here do "get it" and totally realize what this nightmare disease does to the caregiver spouses. I just can't get over the tactlessness and sheer stupidity of some of the comments that "civilians" make. Oh yeah, right. Just take him home and take care of him. People who wouldn't dream of lifting a finger to provide any care are all very quick to tell us that we should. The remarks I used to get a lot were, "He seems fine to me.", (of course he seemed fine--because I was exhausting myself taking care of every last detail of his life)...and that classic, "I know I should have been stopping over to see him, but I just didn't get around to it." That one really gave me the urge to kill. Anyway, try to get outside a little bit and take advantage of the longer evenings, if you live where the temperatures are moderating and the time has changed to Daylight Savings. I walked outside yesterday and today, and it helped a lot.
Mariposa, Elizabeth stated that so well. My DH recently had X-rays because of a fall. I told the girl I needed to go back with him and why. She said she could do it. 5 seconds in she came and got me. Another tech came in and tried to get my DH to sit in a chair. He didn't understand. She asked me if he was on drugs. I whispered no he has Alzheimer's. She then asked me if I had read "still Alice". I was so mad. I just said yes I have 10 years ago. What that book is going to give me information on what I was going through? I have heard "I read an article about coconut oil, and many other things. Really you think if these things were a miracle cure the medical community wouldn't know! I am so over ignorant people. That is putting it nicely of how I feel.
Yeah, and the other thing that "civilians" always say is something like this: "Oh yes, I understand exactly what you are going through. My grandmother had Alzheimers."
Aaaugh!! I got that one from someone last week. But I was polite. (As I gritted my teeth and dug my fingernails into my palms.)