Joni, my heart goes out to you. I have never heard of PTSD with caregiving. I am happy you are safe now. I am just plodding along. I am meeting with the pastoral person from hospice and I will continue. I keep wondering if I am grieving like I am supposed to as I do not have the intensity of feelings that I had when I placed him. I do notice that my level of anxiety has lowered significantly since his passing. But he tells me everyone is different. I feel sadness in my heart and feel like a boat adrift at sea. He tells me finding a new purpose takes time and a lot of trial and error. I still prefer to stay home and going out is a real effort. God bless and I will be praying for you. Feel free to email me if you need someone to listen.
Joni, take it slow, take it easy, take it one day…or one hour…at a time. And stay safe. Thank goodness you are safe. This is the only disease that destroys the caregiver as well as the patient. Arms around. I am thinking of you and sending care and support by ESP.
There is life after Alzheimers caregiving. There is life after losing the one you loved so much that their loss took half of your heart that was ripped out when they died. It may seem like life is gone, but it isn't.
At the nine-month point, I still think of him and reflect on our life together constantly. He is never far from me. But I am just starting to be able to wake up in the mornings, eat, shower, and dress because I want to (not because I'm forcing myself to), and then do some authentic, enjoyable, meaningful activities with real engagement and enthusiasm. And I'm losing weight (which I needed to--got heavy as a caregiver) and getting much stronger and more fit, with my hair gradually getting back into a decent style instead of being chopped off so short because there was no time for or (later) caring about self care. I still feel very alone, and wouldn't dream of trying to look for guys--but I can at least see that it may be a possibility in the future…just for fun.
So it's a long journey, and I don't know the destination exactly…but there is life, light, and goodness after the devastation that is Alzheimers. Do keep us updated.
Dear Joni, I am so sorry this happened to you. Thank goodness you were released after a day. I think another member of this site had a similar experience within the last year. It makes me both sad and angry that caregivers often reach the limits of their endurance and are unable to find appropriate help within their communities.
If I remember correctly, your husband’s illness took up a good part of your marriage - you have had a long haul. I truly hope that you start to feel better and that you can put together a life for yourself that includes some beauty and pleasure.
I posted in the book recommendations about Tom Zuba's "Permission to Mourn - A New Way to Do Grief". A fellow widow gave me a copy. He writes from the perspective of surviving the death of an infant daughter, his wife, and then a young son between 1990 and 2005. His book has helped me heal. His Facebook page is Tom Zuba teaches a New Way to Do Grief.
He reminds us that we have walked through fire and we have extraordinary strength. The book was like a big hug for me.
Thank you everyone, as always, for your strength and love. It is three months ago today that the love of my life died. I am not doing well with this at all. At first the numbness was helpful, but that wore off pretty quickly, and these three months without Amir have been excruciating. I'm trying to stay busy when I can and rest when I need to, but no matter what I do, the evenings and nights are horrible, despite the fact that he was in residence for the last 7 months of his life. Am I crazy? I still find it unbelievable that he is really gone. I still can't imagine life without him, even though I'm living life without him. I get angry, I feel guilty, I feel overwhelming sadness, sometimes all at once. But every feeling I have boils down to one thing: I miss him so very, very much.
You will always miss him. Whether Amir was living with you or not at the very end I don't think matters. The realization that he is gone is overwhelming. Moving through the grief process is a difficult journey, and one that is different for us all. Just keep getting up every day and try to find some small pleasure in your day. You shared your life with him and now he is gone, so you are going to feel a tremendous loss. In time, the pain will lessen. It is over two years for me and I still miss him every day, but I cry less and remember more of our good times together. Now, I am very grateful that I had him in my life for all the years I did.
I feel your pain, and wish you the strength to endure.
I could relate to everything you said. First the numbness and now the excruciating pain.
My husband was also placed for nine months before he died. But the strange thing is I am missing the man before AD.
I need to be reminded how difficult he was ....it's like I only remember all the good memories and am Soo
Missing him.
Nights and mornings are the worst. I still reach for him when I awaken and then get that sick feeling when I remember he is NEVER going to be there. Yes, it is impossible to comprehend living the rest of my life without him.
I keep busy and family and friends are around but the loneliness is still there.
I am aware that there is no way to get through mourning except going through it. It has to hurt.
Lorrie, Like you I am keeping busy but the loneliness is always there. Meeting with hospice again next week. My husband was in placement for 16 months so I have gotten used to the house being empty. Actually I rather enjoy the space to myself. Just went today and put another payment on his grave stone. Father's Day was hard.
It is so good to read this thread and know that others understand what I'm going through. Fortunately, my DH did not have to be placed but I wonder if it would have been easier for me if I had already gotten adjusted to living alone. I'm outside a lot working in my flowers and that helps but I'm already dreading the lonely days of winter and the coming holidays. Father's Day was hard.
Yesterday I was in the grocery store, and the cut flower bouquets had some that were very, very similar to my wedding bouquet. (Chiefly stargazer lilies, with some pinks and purples, and some greens to accent the flowers.) I thought about it hard, because they were more expensive than the mini-carnation bouquets that I usually get, if I buy flowers at all. And they won't last as long. But I thought, "oh, what the hey", and I bought them and put them on the chest in the foyer. I smile every time I look at them.
"I wonder if it would have been easier for me if I had already gotten adjusted to living alone". Dazed*, for me at least, I did not really feel like I was living alone while he was placed. My husband had FTD and especially during the last years at home there was essentially no peace. He was hospitalized unexpectedly, then sent to rehab and then transferred to a palliative care ALF.
So, before his death I feel that it was pretty much an exchange of one set of worries and anxieties for another. I think there was some measure of comfort in being able to return to a quiet environment and to live without the threat of his unpredictability. But I was never relaxed because of the calls from the staff from the various facilities. It seemed like there was always some or another issue.
Lorrie*, as time has passed the memories of my husband as I knew him "before" are becoming stronger and crowding out the memories of during. Now this isn't all day every day and there certainly are triggers for upsetting memories. Generally though, this aspect of the passage of time has given me solace.
This is my first time posting here in this thread. I have not yet read through it, but I intend to read all of it.
For now, I would just like to share with you my latest coping mechanism. Although I can't believe it, today marks one month since Sid died. I found myself still barely able to get out of bed, still confused, unable to concentrate, and unable to get any tasks done. It is very important that some financial matters get worked on ASAP, but I just couldn't do it. My financial advisor needed cash flow charts filled out so she can do her job, which is to handle my insurance money the best way possible.
So here is what I decided to try. In order to get out of bed in the morning, I push all thoughts of Sid, my grief, and my pain out of my head. I put it in a corner, so I can accomplish all business that needs to get done during the day.
Then at night, I sit down with his picture, and let loose. Sometimes I yell at him for leaving me; sometimes I scream and cry, and sob; sometimes I remember the good times; sometimes it's all of them.
That seems to be working for me to the extent that it allows me to get necessary work done during the day.
Joan, I would keep your finances as simple as you absolutely can, and don't make any kind of major, irrevocable decisions at this point. I'm going to go out on a limb here, probably being a buttinsky...but I suspect the person who knows best how to handle your insurance money is...you. Just be careful, and try, try, try...and I know it's like trying to walk with your feet stuck in tar...try to summon enough energy, even if only in short bursts before you have to rest and vegetate again--to be really aware of your finances. A financial advisor is just a helper who is working for you, after all. Be careful how much control and authority you give her, especially at this ultra-vulnerable time. Try to be your own financial advisor as much as possible.
I give you a lot of credit for being able to compartmentalize. Just go easy on yourself, even during your more productive periods. One day at a time, because bereavement is a lot of work--a real sucker-up of energy. (((hugs)))
Once upon a time, when Sid and I had money, we had a financial advisor - a friend we had known for over 30 years. He did very well for us. I know nothing about investments. Numbers bore me to death, and Sid was horrible at it. Then we got caught in the housing collapse and Alzheimer's Disease. Goodbye money. Honestly, a lot of it was because Sid was unable to make any decisions, and I didn't listen to Steve ( advisor) as much as I should have.
Steve is slowly retiring and handing the business over to his daughter, who has a business degree from Wharton School of business, an MBA, a CPA, and a CFP. I trust her judgement implicitly on how to invest my money so that I can live w/o constant money stress. But as you say, she is the advisor. The final decisions are mine.
Oh, how right you are - this bereavement business is very hard work, a total energy drain, and it SUCKS. It cuts deep.
I was talking to my rabbi yesterday. She was telling me that the ancients thought of grief as a knife that cuts through to the heart, slowly moves to your back, then outside of your body, but still surrounding you. Little by little, it moves farther away from you until, although it leaves a scar, you are able to heal and enjoy life again. But it takes TIME. Different time table for everyone, but TIME.
Joan, thinking of grief as a knife cutting through the heart is a great analogy and so very true. I had a financial advisor before applying for Medicaid but not now. I have enough to live on and some in the bank. He had a small insurance policy. I do not worry about money now that he is gone like I did when under Medicaid. with Medicaid I had such anxiety whenever they would send me a letter that it was almost to the point of panic attacks. That has all gone thank goodness. I think your method of handling the grief is good--do whatever you need to do to function. My grief now is more quiet and not with a lot of wild emotions but just a deep,quiet sadness and numbness. I have had a few days when it has lifted but not too many.
Today was a sort of down day as its the 1 year anniversary of Ron's passing. The good thing is that I can now remember the good things without all the horror of the previous 2 or 3 years intruding. Now its time to loose some weight. I still have to get busy and figure out how to get rid of all his tools and stuff in the basement that I will never use. I need a man to help me. We never made any friends here in our development because he was already into the dementia when we moved here. I didn't realize that until months later.
Joan, I am so sorry that you have lost Sid. I cried while reading your posts and your eulogy. The part about watching them breath those last few breaths and then the stillness. It came back with a crash although it is never far away. Take care of yourself. The only way through this is to feel the pain, I guess. My thoughts and prayers are with you.
MaryinPA, I just had the 6 month anniversary. I know what you mean about all the tools. I gave so many away to my son and SIL. I kept the power drill, screwdriver etc. I have gotten pretty handy with small jobs around the house since he was unable for so many years. I, too, have reached the place where I need to concentrate on losing some weight. I frequent the YMCA about 4 times a week and really need to step up my workout. I am going to the Holy land this fall and part of the trip involves walking tours. I have gotta get into shape! I am glad you can enjoy good memories more and more now.
MaryinPA, I feel for you on the one year anniversary of your husband's passing. Mine has been gone just under four months and I am, sadly, no better off than I was at the time. Each anniversary brings new pain. One year ago I had brought him home from rehab, and was furiously trying to find an assisted living place for us. Never in my wildest nightmares did I understand that there might come a day when we wouldn't live together. I didn't have to face that reality until September of last year. So one year was the last period of time during which we lived together. I've thought so often that I wish there was a sign that would come down from heaven every time we did the last thing we would do together - you know, this is the last time you'll walk on the beach together, this is the last time you'll go grocery shopping together, this is the last night you will spend together in your home. Would it have made a difference? I don't know, and I'll never know.
My husband and I had our huge extra room set up as a workshop for us, and it is still set up that way. I used our 25 year old power drill to take down some shelves not long after he died, and it finally gave out while I was using it. Since I can't face going to the tool department in Sears without him, I ordered one in the mail. I was happy to get it, but when I went to throw out our old one, I couldn't do it. I sobbed and sobbed. I know people say it will take time and it will get better, but in my heart I don't really believe that. But I believe others believe it, and that's as far as I can get right now.
Love and hugs to all who are suffering and all who are healing.
Joni Not sure that time really makes it better. I do think that over the course of time scar tissue forms where raw wounds are and then the pain is dulled somewhat. It is still very tender but perhaps not the stabbing pain you are experiencing presently. Sobbing is very cathartic. Just take each moment as it comes...perhaps one day at a time is too overwhelming. And that's OK!
It is almost 3 months for me. I took a vacation (first one in years) and honestly it did me so much good to physically get away for a few days. The searing pain has lessened somewhat. I keep wondering if it will come back. Went to church and someone was celebrating 50th anniversary and that was a bit sad as we never made it that far. Still not making any major decisions and taking it slow and a day at a time. Hospice is coming on Tuesday and still in 2 grief-end stage Alz groups that still seem to be helping.
I've just returned from a week away in the Northlands--Montreal (Museum of Archeology and History), Quebec City (just looking around the old town), and Tadoussac for the whale-watching and the Whale Environmental Museum. (Actually has a long, French name that I can't remember.) I went with my friend Phyllis, and really enjoyed it--we basically ate our way across Canada--oink-- but I probably could have accomplished more book research if I had gone alone. And thank heavens for Pimsleur and Babbel.com. I actually can communicate (to some extent) in French...and what a help that is.
I just got in the door four hours ago, and realized immediately that the time away has clarified my thinking and emotions quite a bit. I'm at the not-quite-eleven-months point...when I came in the door I went right back to the bedroom to talk to Larry's picture. Basically what I told him is that I know I must move forward and build my own good life, in a way that he and I would both think was positive and appropriate. It is really time to get serious about that, and it doesn't take a thing away from our marriage or what we were to each other for me to have a good life moving forward. I felt with Phyllis on the trip the same as I feel here at home with DD and the grands...that I am so worn down in every way...so sad...lonely...tired...etc.etc....that others take advantage of this just a bit. Now, I don't mean to whine, or to sound like a victim, or to criticize family and friends...but I have got to get a grip. If I don't take control of my own life and move forward the way I want to, others are just going to control my life for me. You all know the situation with my daughter and her plans to divorce s-i-l, which make me almost the default indentured servant for her. And I found that with Phyllis on the trip, it was just a little bit too much about her...for instance, she was afraid to drive in Canada, so I did 100% of the driving. Give me a break. That was just taking advantage. Plus the ongoing litany of her physical ailments.Her sinuses, her stomach, her legs... Puh---leeze. I really care about other people and their problems, but I think I deserve more out of life than just being the caregiver to the nations. I'm not normally like that...I'm truly not a martyr...just have been at a low ebb this year because of the loss of Larry.
So I am going to start a strict writing schedule. I did all kinds of research in Canada that I need for my French-and-Indian War novel, so I'm good to go with that. And I'm going to back off from childcare and cooking for the family if it takes away from the writing I want to get done. And I'm going to give Phyllis my notice that I'm not going to rent the room in her Beacon house anymore. Where I really want to be part-time at least is back home in Kingston, NY, and I'm going to talk to my friends up there and see what I can come up with. I do miss my old home city, and I'm even thinking that I could stay in the Heartland part-time and NY part-time. I was so happy to walk into my little midwestern house and sit on the screened porch and look at the yard and the trees in the park...it truly is nice here. (Mim, you know what I mean. You can vouch for me that our town is nice.) Anyway, I think I'll go take a walk. I already played the piano a little, and just a quick fanfare on the harp, because it's a little flat. (Touchy instrument--doesn't like to be left alone.) Bye for now everyone.
Elizabeth, Larry would be so proud of you, and, as you said, making a new, good, life for yourself takes nothing away from what you had. Fantastic. Go for it, and don't look back.
Elizabeth, I agree with you that if you do not take control of your own life, others are going to take control of it for you.
I'm glad you had a good trip. In my years of living as a single person, I learned that good friends do not always travel well together. When I was in my twenties I took a charter flight to Europe with a good friend who insisted that we visit 7 cities (Munich, Vienna, Salzburg, Innsbruck, Milan, Venice, and Florence) in 10 days. I would much rather have gotten to know just one or two cities but I was not forceful enough to put my foot down. I resented her for months after we got back. Eventually I realized that there was a difference between a good friend and a good traveling companion. So try not to give up on Phyllis just because she proved to be a dud on the trip.
I rarely find anything on the internet in the morning especially, that makes me laugh, but "I deserve more out of life than just being the caregiver to the nations" did it!
Your post was inspiring. So is your French proficiency.
Thanks, everyone. I am feeling such a sense of happiness, peace, and purpose since I got back from Canada. Larry is in my mind constantly, but in a happy, good way...like he is right there with me, watching over me and being part of me always...but not intruding or getting in the way of any new, positive thing I choose to do. It's hard to explain. I still wear my wedding ring, and I still have the "shrine" in the bedroom...but I think I'm getting closer to the day when I will re-organize things a bit...really make it "my" bedroom in a useful way (like get all those pictures and Mass cards off the top of the dresser, and put my brush and comb there, etc. Maybe I'll wear my wide wedding band on my right hand, as a memory ring for me, but looking like an ordinary, pretty "right hand ring" for those who don't know our story). In the good old days before his decline, I used to tell everybody that he was "a blessing and a gift"...and he was...and more and more, I realize that he still is. He had a lot to do with the person I've matured into over the past 20 years, and I think maybe that in whatever way I make a success out of the next 20 (or whatever), that his spirit and care will still be with me, no matter what. And that's a good thing. There was so much sorrow in his death, but yet so much happiness and goodness in our life together...and that goodness is remaining.
Sometimes in the process of recovery from the tragic aspects of Alz-spousing, as a healthy determination to live life begins to re-assert itself, there's a tinge of implication that reclaiming some pleasure and moving forward represent not caring enough about the lost LO.
This is a well-articulated depiction of how this is not so.
Today would have been our 12th wedding anniversary and so many memories are flooding back, the happy and the sad. I just feel sort of 'blah' today, so I'm not going to fight it.
Now today I was able to start my day cheerfully and in a timely manner--have had some relaxation, but also got a couple of morning tasks done without feeling like I was just forcing myself to function...it is odd how sometimes I am fine one day and funky the next. Don't understand it and can't analyze it too closely...I think it's just part of the process. (Don't worry, everybody, I'm not going to give a daily report!)
When I am correct about something, I usually have scores of website members tell me that I have " hit the nail on the head". It's very gratifying to know that I have written something that so many people can relate to and are helped by.
By the same token, when I am wrong about something, I am wrong IN A BIG WAY. I don't seem to do anything " half-assed", so to speak.
So here is what I was SO WRONG about in this grief business. I THOUGHT that because I had grieved so long and hard for so many Alzheimer years, that I would have an easier and quicker time with the grief that came with Sid' s actual death. HA! WRONG, WRONG WRONG. This is physical, mental, and emotional torture. No, I don't have to get used to living alone because he was in the NH for two years, but the grief of him being gone from this world, never being able to see and touch him again, is all encompassing. It's cruel, painful, and unrelenting.
Even with one on one counseling, group counseling, and supportive friends and family, I am still a mess.
Dearest Joan, I wish that there was something worthwhile that I could say, to ease your dreadful pain but I still feel the way that you do, after nearly six years. Yes, life is ok and there are moments of happiness but like you, I really just want my husband back. But how can we wish that Joan, when it would only mean more suffering for them. Instead it is us who will keep suffering, first their vile illness and now their loss. So Joan, as Bama says, put on those "big girl bloomers," pull them up to your chin and just try to keep living until you are alive again. I send you my very best wishes and understanding , cassie*
You referred to something I do think about often. You're right - I DON'T want Sid back the way he was. He suffered so much. Not only was he physically disabled, confined to a wheelchair, and unable to do much of anything physical for himself, but right up until the last couple of weeks, he KNEW something was wrong mentally, and he was constantly frustrated that he couldn't remember, couldn't find the words he needed. He was also in constant pain from all of his physical ailments. I would never want him to keep suffering like that.
When I think of him, grieve for him, and miss him terribly, it is the PRE-Alzheimer Sid I am thinking of. My strong, tall, funny, capable, loving, kind husband with whom I lived for 45 years.
I have been slow at everything related to this dreadful disease. Slow at accepting that Alzheimer's Disease had changed my husband and marriage forever; slow at learning to relate to him as a "disease", rather than my husband; slow at adjusting to every cognitive loss; slow at learning to live without him when he was in the nursing home. So honestly, how could I think that I would be anything other than slow in the grieving process?
Tomorrow ( today, actually, since it's 4 AM), I will be getting together with one of the women in my grief support group. The counselor who runs the group encourages us to make friendships with each other outside of group, and this woman seems very nice and more than willing to be supportive, so we are going to lunch. I find that I am better when I am socializing with someone than when I am just sitting home alone. Even though I have much to do in the house, socializing keeps me sane. It keeps me from drowning in the well of grief.
Since you've been a member here for a long time, you probably know that I visit my sister in Chicago every year for the week of Thanksgiving. Well, this year I am going for 3 weeks. I am probably the only person who LEAVES sunny Florida in November to go to CHICAGO, of all places, but I desperately need to be with my family. Even if I will freeze my limbs off.
Thank you for your response. I am depending and relying on my website members to help me though this period of sorrow, so I deeply appreciate every post I receive.
"Just try to keep living until you are alive again."
That is so well said. I can feel myself "coming alive" in small patches here and there...where I am genuinely interested and fully engaged in something...not just going through the motions. And it is fascinating (well, OK...to me, anyway) how I have changed and am changing. Whatever is going on with me--and it's too early to really tell--but I'm definitely turning out to not be the same person I was before. I think I'm turning out to be much more self-protective...not so eager and goody-goody to be such a caregiver to the people around me. I'm turning out to be more of a musical and creative person, and not so much of a died-in-the-wool nurse type. I'm a lot more interested in taking care of myself than in taking care of other people. I'm getting better physically...much stronger, somewhat thinner (need to get more weight off, but the trend is downward, thank God)...and I'm sleeping through the night for six and a half or seven hours. I had been sleep-deprived literally for years...so now just going to bed, going to sleep, sleeping all night, and waking up in the morning to the pearly dawn sky and birdsong is just so...normal. So nice. It makes me feel like a human being again. OK, that sounds ridiculous, but perhaps it is one of those things that only other Alzheimer caregivers can understand. And as much as I miss him, and think of him constantly and our life together that I still long for (stupid, I know...hey, it ain't coming back)...it seems like what is going on is this: Somehow all that happiness and goodness...and the X factor that made our relationship so special...is still with me and part of me. Now I can't explain this well. Yes, he is gone, I am sick with bereavement, etc. etc. But I am coming out the other side with a lot of the qualities that made "us" so special incorporated into "me"--I think I am carrying it forward somehow...I just can't articulate this...it sounds weird. There was a lot of goodness and happiness in our relationship, and a lot of that has stuck to me somehow...through all the hard work and misery. So the hard work and misery have passed, but the goodness is still there.
It looks like there is still going to be life--a good life, maybe--after Alzheimers.
All the above posts have Said it so well. Joan, as Cassie* said I wish there was something I could say to help you but rest assured that all of us particularly those stuck in the grief boat "get it" and we will travel this journey together. I too feel that socializing Is a good thing and it sounds like you have a nice group to socialize with. I have started to reach out to some people that I knew before alz. One widow lost her husband many years ago from cancer and she invited me to walk with her. She started walking every day since hip replacement and since I enjoy walking I will probably do this with her once in a while. Hospice has encouraged me to try some things and if I feel better afterwards than it is something I need to keep doing. I think visiting your sister will be great for you. I took a 5-day vacation in July and while I was gone I felt pretty normal. Of course when I returned everything was the way I left it but the change of scenery was a good thing so that tells me I need to do it more,often. Elizabeth, you are further along the path than I but your post gives me encouragement. I have had moments where the grief has lifted but it does not last too long. However, I did notice a difference at 3 months so that is encouraging. I can relate to you not wanting to be the caregiver to the world. I raised my children, then had a career where I was caring for students and then cared for my husband For 12 years. Now it is time to take care of myself. I love waking up to,the sounds of the birds in the morning and not having the constant anxiety and fear that the phone will ring from the nursing home. That in itself is such a blessing. A couple things have happened that make me think that I am indeed moving forward. Last week I was able to move all the bereavement cards and letters from the middle of my table to another location. And I had the actual desire to clean my house--I am not a dirty person but during his illness I just hit the high spots and need to get into the closets and crevices.
Joan, it is still early in your grieving process. Be easy on yourself. I still find moments when out of the blue I suddenly realize that he is gone. Really gone! It literally takes my breath away because it hits when I least expect it! Everyone says to just take one day at a time. Some days we just have to take one MOMENT at a time. Baby steps...but at least we are still standing!
Oh Joan, don't be so hard on yourself. I really don't think it matters whether our spouse is home with us or not when they die. The grief changes, and hits with full impact when we realize they are gone from us forever. My husband has been dead for almost three years, and I am just finally accepting that he is never coming back. I have stopped resenting all the times we won't get to share. I think we all tend to remember the well-spouse, and that makes the grief even more difficult to bear. All we can do is try to find some small happy moments wherever we can. I am still attending a bereavement group once a month, but finally can talk there and not cry. As others here have said, I hope to feel truly "alive" again one day soon. Joan, you are a very strong woman, and I'm confident you will fight you way through, and eventually find smiles replacing your tears.
Joan, I felt the same way - that I had gone through so much terrible grief over my husband while he was still alive, especially when he was in the care home, that it would somehow lessen my grief when he died. And because I was in such numbness and shock right after his death, I felt like that was true. That I had somehow "spent down" my grief, and that the final grief would not even be as bad as the grief when he was in the home. That was very far from the reality of it - when the numbness wore off, as it did very soon, I realized that the finality of his death was far more awful than anything I had experienced to that point, and unfortunately, it continues to be awful. I still miss him so much it feels like I can't live through the pain. Just today I realized that he is never coming back. Just today, 122 days from his death, I realized he's never coming back. How is that even possible?? How can it be that I didn't know that until now?
I traded my car in the other day, bought a long overdue new one. The salesman asked my marital status and I said widowed. Later, when I saw the form he had typed up, in the marital status it said "single". I'm not single! I'm farther from single than I've ever been since the day I was born. I am widowed, meaning I am MARRIED, but my husband is no longer here. It's even hard for me to understand how I still consider myself married to him, but I do. My heart hasn't let him go yet.
Joni, your heart doesn't have to let him go. He will always be with you, as Larry is with me. And that is a good thing, not a painful bad thing. I'm not fully there yet, but I am coming to realize that there really is a life for us after Alzheimers. It is very different, but it's not painful...it just seems to take time. We are changing from "us" to "me", and just developing and defining a whole new reality. What helps me a lot is thinking back to Larry's life--how he buried his first wife and his only son--had such unbelievable sorrow and grief...but just kept putting one foot in front of the other...got some counseling help (which he didn't like to admit)...and found a great deal of very unexpected happiness again.
I, too, found that nothing...Nothing...in the years of caregiving prepared me for the misery and horrible-ness that I felt after he died. This 11 months of grief has been, without question, the worst thing I have ever experienced in my life. It is re-defining me...no question. But I am starting...just starting...I'm starting to see that there is growth in all of this, and that I'm going to come out the other side with some changes and with some strengths that I didn't have before. And I'm so, so happy and grateful sometimes...that I had him in my life. How can I be unhappy, when he is at peace and no longer suffering, and I know that we had a long marriage full of closeness and love that some people never get to have? Well, of course I am unhappy sometimes, but I'm feeling a good deal of gratitude, too, that I had him for the years that I did. (I'm not making much sense, I suppose. As I said--I'm not there yet. The grief cocoon is starting to open and I'm not quite sure yet what is going to come out! A butterfly, I hope--but don't really know yet.
I just check in every once in a while now...not often. It has been four years since Dave passed away. I don't know if I should share my thoughts and feelings with you because I don't know if mine are normal. First, you are correct that I felt that the grief I suffered during losing Dave to AD would lessen the loss when he died, since he had been "gone" from me for such a long time - not talking, not knowing who I was, etc. I was wrong. There was a super big hole in my heart after he died. It is still there.
I tried travel - I worked full time, but weekends, vacations, holidays - I took off with other Alzheimer's spice from here and we became like family (still are!) and that helped me immeasurably. I tried changing out the furniture in the house and getting what I liked. That helped.
I can occasionally recall Dave before AD and the fun times - but I STILL see him most of all in the hospital bed in our dining room which I converted to his room for the last year of his life. I keep hoping it goes away, but it hasn't totally as yet.
Most of my other spice widows and widowers have moved on - and date, or have remarried, or enjoy male/female companionship and are very happy and I am very happy for them. For myself, I have not yet dated, not checked out Match.com or any other site, nor am I interested in doing so. I am alone, but not lonely. I have my job, which I love, and I have several friends to go out to the movies and dinner with on occasion.
However, I am not happy. I am content. There is a big difference between those two feelings. It took me four years to get to content. I am wondering how long until I can honestly say I'm happy. This does not mean that I don't have fun - I do. I just got back from a wonderful 18 day vacation to England and Ireland with my daughter, son and daughter-in-law that was a dream come true! I even climbed the stairs at Blarney Castle and kissed the Blarney Stone! I visited Waterford Crystal factory, the Ring of Kerry, the town where John Wayne filmed "The Quiet Man," the Cliffs of Moher, the Giant's Causeway, Belfast, Dublin, etc. We also visited Highclere Castle where "Downton Abbey" was filmed. Glorious! So you can see that I am experiencing wonderful things in my life and am moving on.
My point is that we will never completely get over our loss. And we will each deal with it differently. Some can have two or three great loves in their lifetimes - I may yet have another great love....who knows! But that hole will always be there for what isn't any more. Understand that we can't live our lives based on what was, but what can be. We can't look to the past, but look to the future. I'm still working on being happy....I'll get there - and so will you!!!
I totally understand what Mary just said. I, too, am content with my life. I travel with my family from time to time. We are planning a September wedding. It no longer hurts so much to realize what Bill is missing. Am I more content than happy.
It's been 6-1/2 years since Claude passed on and I'm another one who is content with my life. I don't date nor have any inclination to do so. I can do what I want to do when I want to do it. The hole will always be there in my heart, but I can think now about the good years we had and smile, and not dwell on the bad times.
I just wrote a long post thinking I was an oddball because I have not spent a lot of time grieving but I lost it because I took too long to write it. I don't cry though tears do come to my eyes sometimes and I wish I could cry.
My situation is different as my daughter lives with me and its sort of like being a 'housewife". I have meals ready on time and I probably eat better than I would be myself.
I imagine Ron looking down from above and thinking I was doing well on my own.
I recently decided to loose the 20 pounds I gained in the last 5 years and also to get off the antidepressant that I have been on for 5 years. I am halfway there on the weight and will be done the pills by the end of this week.
I find having something to look forward to helps keep me in a good mood, I have been thinking I am happy but maybe it is content. I have been doing things Ron and I both enjoyed. We liked to go to Fl in the winter to see friends and take a cruise. So I did the same last winter. It was really weird at first but I had a good time. In june I took my daughters on an Alaska cruise that I had promised them months before Ron died. Now I have 2 more planned, 50 days in the fall and 20 days next June.
I think of him a lot but I think he would approve of me getting on with my own life.
When I come on here and read many of your posts, I feel ashamed of myself. I know I'm not doing enough to pull myself out of "whatever sad state I'm in." I waste away many days wallowing in self-pity - maybe thinking about a life that is gone forever. I am glad to read that so many of you are more than just surviving. Thanks for your uplifting posts.
I just saw your post about your so recent loss of your spouse and how you are still reeling..I think if you go back and read many of the earlier posts, going back a few years, you will see you are normal. I have just passed the two year mark and I am still stuck on start so much of the time. Someone mentioned Keeping Busy as advice given to them which they dismiss and I agree. What we do is muscle our way through the days and weeks and even years until as someone said we find a way to work around it, the loss..we can never forget our loved one and wouldn't want to.And as time goes on, we see things, hear things, a wedding invitation whatever...and it all floods back again like a tide.
I am facing that right now. A grandson is getting married, finally after living with his GF for some 5 years, on the east coast. I am on the west coast. If you read my earlier post you will see I have been getting treatment for a facet joint injury and severely tight muscle groups as a result of an injury. And I have a tear of a mild sort in the MCL which does not require surgery but I have been told not to push it..it takes weeks to heal. I am now just on the cusp of having some relief..yes I still have to do the ice thing and home exercises and get deep tissue massage.
I am so tired of people telling me to get a wheel chair to get through all the airplane changes. Then there is the beach house with tons of steps..I still sleep in one of the relax the back sort of recliners since sleeping in a bed has been so painful..Everyone seems to think I should suck it up and go. So that is one part of my concerns.
The other is that I am just feel I am not emotionally equipped to handle a wedding on the date and day which just so happen to fall on the same day of the week and date that I put my DH in the hospital for the last time and only hours later became the " W" word.. In the next day or two I have to send the RSVP card...Intellectually I know sit will be a lovely event, costly to be sure, the airfare, hotel etc.Smiles all around but I'm just not " feeling it"..I guess maybe I am being selfish.
So you can see, Dazed*, that the feelings of loss and disorganization, lethargy, disillusionment, etc seem to hang on and we are all different yet the same somehow. Don't be too hard on yourself. It's a jungle of emotions and conditions out there and there is a lot of muck to walk through before we can even start to feel half way like we might ever feel normal again. I am not happy, though everyone else around me seems to think I should be and I am not content either. I am grateful for what I had and for the security that I have but that does not replace what I lost. It is the empty hours when the gloom clouds gather.
Mimi, I'm not sure how much you want to go to that wedding...but if you aren't really "feeling" it, and if it would compromise your own health recovery and be a painful and tiring journey...I think you should send a nice gift (if it seems appropriate), and stay home. You must put yourself first. And who cares what others want you to do? They are not the ones going through the long, painful recovery period.