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    • CommentAuthorJan K
    • CommentTimeJan 21st 2019
    I think I've written before about how I dread the visit from the council on aging case manager, because it's hard to hold on to the tiniest bit of denial when I have to tell her everything that has been going on. This time, after I finished telling her everything that had happened since the last visit, I told her that I felt like I was in the middle of a gathering storm--with darkening skies, driving rain, and the beginning of circulation in the clouds above my head. The case manager said she thought that was a very good description of what was going on. And then she started talking to me about hospice. It took me a minute to collect myself. I don't think we're quite to that point yet (is that more denial?), but evidently I'm not overreacting by feeling like it's getting closer all the time. DH is still fairly independent, but he has so many other health problems besides dementia that it looks more and more like it will not be dementia that takes his life.

    I've been dealing with the thought of losing my husband for a very, very long time. But since the talk about hospice, a new pain has surfaced. When the time comes, I have no one to call. I can't imagine having to go through everything at the end with no one at all with me. We have no children, and almost every relative in both our families has distanced themselves from us completely. We had only recently moved to this new town when DH was diagnosed, and as we all know, it's hard to make friends after a diagnosis of dementia, even if you have the time and energy to try.

    I'm a big one for making lists and developing plans, but I can't figure out any plan that will help in dealing with this. I have visions of coming home by myself to this empty apartment after finishing all the terrible last details, and just sitting down--and staying there. After sixteen years of caregiving, there's not a shred of a life left to start rebuilding with.

    Someone who has not dealt with caring for a spouse with dementia has no idea of the devastation that it causes in every aspect of your life. And just the sheer passage of time means that I'm not even close to being the person I was before all this started. I can't ask a "civilian" for help, because they have no idea what this is like. So I'm asking the people who do know what it's like. Does any one have any suggestions for dealing with being completely alone through the last days and weeks, and then burying a spouse with no support at all? I really would appreciate any suggestions someone might have. Thank you.
    • CommentAuthorbhv*
    • CommentTimeJan 21st 2019 edited
    Jan, this is heart breaking. No doubt about it.
    Last March I finally got my hb into day care. Was surprised he just followed me there. That helped me prepare cause I started doing some things for me when he was there. I was going to make an appointment to get him into a memory care place for a few weeks respite for me to visit family I hadn’t seen in 8 years. But before I could do that he developed a partial small bowel obstruction. It took me a little while to recognize how serious it was. I was afraid to call the ambulance for fear of the hospital getting us into a long term life support situation. I was amazed that they had some training in end of life care. They didn’t force things. They gave helpful recommendations. They didn’t make me leave! My nurses ran interference for me in case anyone might try to tell me visiting hours were over. The doctor who came to do the final paperwork came in to see me and asked if he could give me a hug. I hope you get nurses and doctors like the ones that helped us.

    As difficult as the years of caregiving were. As much as I felt it would be a relief when the time came. It was definitely not a relief. I found, to my surprise, that I would not leave him alone.

    First suggestion - prepare a “go” bag or checklist. If you go to the hospital, bring a phone and don’t forget the charger, a notebook to keep track of things and make notes for yourself. I had a tablet with some ebooks to read. But I didn’t read. You could pack a toothbrush, deodorant, change of clothes or undies, but not necessary. My husband’s nurses took good care of me too.

    Second suggestion- take advantage of hospice. End of life care is their business. They will take care of you as well as your husband. They can provide counseling and grief support for you too. Especially if you do hospice at home.

    We were in the hospital for three days I think and they said I had to call hospice. They gave me a list of places but couldn’t recommend any. I recognized two and called them. They came to the hospital and gave me a presentation of their services. I picked one that had relationship with the VA and they also had a better morphine delivery system for in home use. It was a good thing I had my phone with list of contacts. I was able to coordinate some neighbors to open my gate and be there to accept delivery of the hospital bed and medications. I have a friend in my neighborhood whose husband has different health issues and we’ve exchanged house keys and gate openers. So I didn’t have to leave him alone. But my husband died an hour before we were to leave.

    Third suggestion - you might want to make contact with one or more neighbors and ask to exchange contact info. It can be a win win situation. Since you’re home all the time you can let them know if anything odd happens. If you end up in the hospital you can ask them to pick up your paper and mail and hold it for you. My neighbors are much younger and we don’t have a lot in common, but I was amazed and extremely grateful for their help in small ways the last few years and through the final days! People can surprise you. Just before this happened someone shared a story that basically said “just ask”. Remember that! JUST ASK. Don’t be afraid to ask a neighbor to do something in this situation. Be specific. And don’t give up if they’re not able to do that thing at that time. They might be able to help the next time. What’s the worst that happen? They might say no. But, if they say yes.... it’s a whole new world!

    Fourth suggestion - put contact numbers in a notebook or your phone for neighbors, newspaper delivery, mail, anything else you can think of that would need to be contacted if you’re away from the house for several days.

    My husband’s sister came to the hospital several times and stayed quite awhile. He had been enjoying having lunch with her once in awhile the last couple of years. I thought we were becoming friends, but not so much. She was no help planning the funeral. She asked for a bunch of stuff I wasn’t willing to give her and I don’t think I’ll be hearing from her again. No Christmas card.

    Fifth suggestion, pick a funeral home and add contact numbers to your notebook or phone. You don’t have to decide the details now but you will want to know who to call to collect the body. If you do some legwork now you can compare prices and find someone you’d like to deal with. It’s not morbid.

    I had cut out a newspaper article with an outline of what to do after the funeral. When the time comes I’d be happy to share that with you.
    Jan, I think bhv (Bonnie) pretty much said it all. As I'm trying to write a helpful post for you, I find that all I'm doing is saying exactly what Bonnie did. So I'll just write a Great Big Ditto. (Except for what I wrote below.)

    In terms of coming home to an empty apartment and just sitting there with no foundation to re-build on...yes...I have been there. How to go on with life when your husband Was your life. Who are you by yourself when it was always, "You and me, Babe." Sure, you were single years ago...but that was years ago. What about now? There is just no structure, no template for your life...everything is just a gray, lethargic, swirling impenetrable mist. It seemed like it would be a relief, at least somewhat, when he died...but now he has died...and it is not a relief, it is just horrible. After the funeral, when the old life is gone and the new has not really started yet, just be gentle with yourself and take it one day at a time. Those days may consist of sitting around in grubs, sometimes feeling apathetic and blah, sometimes going on big crying jags, maybe spending hours online cruising the Internet until your eyelids turn red and maybe not washing your hair for days. But that's okay--just breathe, just "be", and don't "should" on yourself. It's going to take the time it takes, but eventually you will come out the other side--a different person--but you will have gotten through the Dark Places and come out into your own good life again. And we are here for you. As you know, many of us "get it" when most civilians don't.
    • CommentAuthorlindyloo*
    • CommentTimeJan 22nd 2019 edited
    Oh, Jan, My heart goes out to you. This is such a tough time. I want to add a little bit to what Bonnie and Elizabeth said. Use it if it helps. You have to glean what you need out of the nuggets each of us provide. Use what is useful to you, discard the rest. First do not underestimate the support that the folks on this website will give you. They will give more love and more support than would seem possible to receive from people whom you have never met. Anything and everything can be shared here, because we “get it”. And everyone is there for you for the “after it is supposed to be over, but its not”.

    Talking with someone about the nitty gritty. Not everyone can do this as you know. There is the burn out factor. I used to have to talk with people sometimes about what was happening or I would have gone mad. I needed that. But I rarely dumped everything. It would have been too much for most people. When you really need someone to talk to and “gets it” Hospice staff may be able to help, or find resources.

    Possibly you can even find someone on this website you feel close enough to that would be willing to exchange phone numbers. I was fortunate to find someone here on Alz. Spouse who lived close. When we were in contact in the beginning, both of us going through last stage with our spouses, we would talk about dementia related topics for three hours straight. Now being widows we reminisce some, but mostly now talk about the future.

    Escaping the pain through jibber jabber. Having a family member or friend you can talk to on the phone, even if they do not fully understand dementia and the toll it takes on people, can help a whole lot. Sometimes I needed to just “jibber jabber”. People who have not been in touch with you may be willing to do this. You talk about anything as long as it is not dementia related. Sometimes it was talking with someone about their trip to Japan, sometimes it was about possums in the back yard. Also I found a virtual visit to the Christmas Lodge or the Cottage on the Lake on this website helped - someone was always there. I just had to escape, even if for just a little bit. Five minutes, ten, half an hour. Friends or family members may be able to help here. Especially if you have a brother or sister or cousin or aunt, or in-law with whom you can reminisce. Be upfront with them about what you need. Eg: “I just need to get away from “my problems” for a while. Would you like to reminisce with me about when you and I……., or when you and Butch met…… or when we skipped school together……….” I found this relaxed me some for a while.

    Support through the last days. My partner died at home. My sister in a nursing home that accepted hospice. If your husband’s family or your family are like some they may come through at this point. Surprise. If they do, be specific about the help you need. Someone to sit with you. Maybe talk. Maybe not. Run an errand. Go with you when you need someone beside you. You decide. Don’t know if you have religious affiliation, but churches and synagogues can sometimes provide support.

    And afterwards. Grief. It will come crashing down. You just have to accept it. I called it tsunamis, one after another. They became less frequent. After a year they subsided then disappeared. And finally I could look up and see sunlight, and a new beginning. Doesn’t mean I don’t miss her.
    • CommentAuthorlindyloo*
    • CommentTimeJan 24th 2019
    Jan, how are you doing?
    • CommentAuthorRodstar43*
    • CommentTimeJan 24th 2019
    Jan, I used to write a lot on this site as these folks "Get It". we go through very similar drama wether we are the wife or husband. After 9 years of which the last one year my DW had an untreatable cancer, my wife pssed. What the three ladies said before this is right on the target. You are stronger than you think. I can tell from your writting Jan. One day at a time. And, on the other side it will take more time. It has only been almost 4 months now for me and I still do not feel like a single adult fully. Maybe 56 years of marriage coul do that and married as a teen. You will make it.
    • CommentAuthormyrtle*
    • CommentTimeJan 27th 2019 edited
    Hi Jan, My heart goes out to you. I've been trying to think of some advice for you but I've come up short. bvh has covered the practical stuff and I have nothing to add. What bothers me most is that you expect to be alone while your husband is dying. If I remember correctly, he is still at home, so it's likely you'll be at home with him. I do remember one of out members (I think it might have been Lori) who posted on this site as she sat with her husband. Many of us posted back that we were with her and we created kind of a virtual support group for her. Don't hesitate to do that at any time. One thing I do think is that going through the agony of being Alzheimer's spouses has made many of us a lot stronger than we realize.
    Being alone with my husband while he died--with my arms around him as I kind of laid across the bed from the chair--was one of the most soul-ripping, profound moments of my own life. Looking back, I don't know how I got through it, but am so glad that I did. It's amazing what you can do when you have to. Then Hospice didn't show up for 45"--busy with another home visit. And the funeral home didn't show up for almost 2 hours--got tied up because they came the wrong way through traffic. And the two family members who said they'd be "right over" didn't show up for two hours. God forbid somebody who worked 12 minutes away should leave work early because their step-dad died and Mom could have used her support. And you know what? I am totally glad for the time after he died that I sat next to him alone. It was almost our last time together, and valuable beyond words. (I had a few minutes alone with him at the funeral home the morning of the services before anybody else got there--I had specifically told the funeral home that I wanted that--with the casket opened for me. I joked to everybody later--much later--that he looked more handsome dead than most guys do alive.