Hello Everyone, This is my first time writing though I've read MANY of your discussions over the last several years. My husband has been in a nursing home for nearly four years now with VasD and AD, now very advanced. I love him so deeply, have for the whole of our 37 year marriage. But strangely I now find myself rather like a deer in the headlights each time he becomes ill or seems close to death. It's like I'm so emotionally tired from all the years of care that I just can't process any more, can't think, just feel stupefied. Anyone else with this experience?
clf, welcome. Since you've been reading here for several years you know how supportive the members are and how much info you can learn here.
I have done absolutely EVERYTHING to educate myself on my husband's disease the stages, symptoms, progression, you name it over the last 6 years. I know how it ends, I tell myself every day that I am grateful he's still home and I know what's in our future. I tell myself and others that I understand there will be declines (sometimes dramatic) and some plateaus but I assure them and myself I am prepared for the inevitable outcome.
But I am lying to them and myself....yes, I know the ending, yes I know there will be dramatic declines, but each downturn breaks my heart. My heart has not accepted what my brain already knows.
clf, welcome. I concur with what LFL says above. "My heart has not accepted why my brain already knows". Every time he reaches a new step down, I panic, my heart breaks, I cannot function, or even believe that the end/an end will come. I just cannot process what is going to happen. So, I try to concentrate on cherishing the days that I have with him ... and not think about what is coming our way.
LFL and Fiona68, thank you both for your replies. Yes, I have also done literally everything to educate myself about this disease. And over the years I've also done my best to re-invent my own life separate from being a caretaker/wife of an AD spouse - with varying success… But now, the thought of actually not having him in this world, even if I have to only see him stuck in a wheelchair and 100% in need of care - well I think I am just rather frozen with both grief and exhaustion. And at another level I long for him to be free from this horrid disease, for both of us to be free from it. But I know that our lives are forever changed by it, and now I will have to go on without him in a whole new way. There have been many times in this long AD journey that I've felt like a widow which no one recognizes as such - no rituals or special services or family gatherings or anything to mark the momentous turning points - and here we are now close to his death (perhaps) and I can barely even think anymore about a service,etc. I'm just shaking and thickheaded and blank. And the loneliness is nearly unbearable.
Welcome clf, The emotional ups and downs of this disease are so stressful . My husband has been in LTC for 3 and a half years and I still sometimes think he will get well enough to come back home. As LFL and Fiona68 said, I think most of us just cannot allow our hearts to accept what our brains know. I agree with you that it feels like being a living widow. All of your thoughts and feelings are perfectly normal for an ALZ spouse. Our emotions and reactions to all the ups and downs of this disease cannot be planned ahead of time. They just happen and whatever they are, it's okay. We are here for support and comforting words for you. Sending you a ((Hug)).
CLF, I am sorry that you are at this point in this long journey. Have you had Hospice on board? They will be a great comfort and will guide you though the final stages. you are not alone, we are here for you. May God grant you peace and may God grant your DH a peaceful and quite passage. Take care of yourself and try to get some rest. Hugs to you and your DH.
I am sorry clf, that you are going through this....I don't think there is anything unusual about the way you are feeling....sometimes our hearts and brains seem to catch up with each other, and then they let go again, and we are left feeling so numb. I believe that the grief we feel throughout our spouses' illness, and at their passing, is as individual as each one of us comes to be as a result of this horrific experience. Please be kind to yourself and let your feelings be what they are at the present time, because as we all know they will surely change...the emotional rollercoaster of dementia caregiving is like no other! Also continue to post here and let us know how you and your spouse are doing.
Hello Shellseeker50 and Bella*5/4/12, and thank you both for your kind attention and words. Just being able to reach out like this and have those "in the know" respond is really helpful. Shellseeker, you mentioned Hospice…Well, here in Canada if a loved one is in long term care (Canada's term for nursing home) then the end of life care happens right in the care home, without transfer to a specific hospice centre (unless there is some reason that the person has needed to be in hospital). So one thing I've decided to do tomorrow morning (it's Thanksgiving day here today) is arrange a meeting with the Director of Care just to review the end of life care at the home. I'm one of those people who do better with more information rather than less, so this will help ground me a little more perhaps. All best to each of you who have taken the time to write to me - very much appreciated.
Welcome to my website. Since you have been reading for years, I will not go into my usual long explanation of the website, except to urge you to read, if you have not already, many of my previous blogs. You can access them on the left side of the home page (www.thealzheimerspouse.com), by clicking "previous blogs". Based upon what you have written, I would say that you will find many with which you can relate.
Honestly, you are so not alone in your thoughts and emotions. I could have written almost everything you wrote (and probably have in many of my blogs). The preparation, the learning, the knowledge, yet the shock when a crisis occurs that could mean the end. The struggling to make a single life while your husband is still alive. It is ALL relatable and understandable to Alzheimer Spouses.
You wrote, "Here in Canada if a loved one is in long term care (Canada's term for nursing home) then the end of life care happens right in the care home, without transfer to a specific hospice centre (unless there is some reason that the person has needed to be in hospital) I live in B.C. and found out two days before my husband died in LTC that a hospice doctor and staff would come into the LTC facility and care for him there. It would have been a blessing! But by the time I got the wheels in motion, he died. I had met with the CEO of the facility because of problems, and that was when I found out. In this case, I found out If you don't ask the right questions, you don't get the right answers. By this time, you are so exhausted, you hope the facility will offer whatever help is available. Not so.
Thank you, joang for these words of welcome - and you can be sure I've read your posts all along the way - and this forum you've created for all of us is lifesaving. Mary75*, I will definitely ask about this possibity of having a hospice doctor and staff come into the LTC facility - I'm not sure that is the protocol here in Ontario. One thing for sure though, I want my LO to have the very best care possible and I'm willing to go to bat for it, if necessary. One thing I can say though is that he has received such exemplary care at this care home, and it has been such a godsend to me. I don't think I'd be alive today without it - honestly.
That is wonderful that your husband is getting such good care where he is. That being so, I would not rock the boat with their staff but let them continue their exemplary care to the end. Unfortunately, that wasn't the case where my husband was. That's why I had to meet with the senior staff and CEO.
Very good meeting with the Director of Care of LTC home today. They have full access to any required medications for comfort, trained staff, a dedicated palliative room with provisions for family members, and what looked to me like a clear protocol for determining when a resident is at end-of-life stage. I felt quite comforted by this meeting. My husband is quite near the end-of-life designation now, but of course, no one knows how long a course it is for someone who is "actively dying" - strange words, yet clear.
Hi clf, I am so glad you were comforted by your meeting with the Director of Care. I completely understand your need for more information, rather than less. I am like that, too, and I know how it can lead to emotional exhaustion. My hope is that during this stage of your husband's illness, the staff at the LTC home will strike the right balance between keeping you in the loop and depending on their own experience and skill. And, I agree, those are strange words, but they are very clear and sad.
Hi myrtle. Yes, just getting that information helped put a kind of 'framework' around what's happening right now. So not only do I have some sense of what stage he's actually at, but also I see again how well attended to he is at the LTC home. This is so comforting to me. Nothing can take away the terrible sense of loss, but I do feel blessed to be able to rely on this kind of care for him when I cannot be there. Thank you to each of you who have responded to my post - you've each one given me a feeling of being "seen and understood" - which is so rare really.
Welcome clf ♥ My husband Lynn has been in a facility for 6 years in February and I understand what you are saying. I agree, it is so refreshing when someone actually GETS what we are saying! You are among friends here ((hugs)) I also understand the deer in the headlights..... the past 3 months have been a struggle for us and I have been paralyzed by fear. Which seems just crazy seeming we have been dealing with this for over a decade! But, each new crisis still strikes me deeply. The first cut may cut the deepest, but they ALL frigging hurt....
I am so happy for you that your husband is getting such wonderful care. I know what a blessing this is and how much comfort it brings you. Blessings to you and your dear husband.
December 26, 2014 Hello Everyone, I want to let you know that my husband did pass away on October 22nd. It was a long bedside vigil, but in the end his death was remarkable and profoundly moving. I'm so deeply grateful to have had the great good fortune to be with him right to the end, and I'll never forget those precious moments. Life has felt like a big swirl since then, but we did have a wonderful memorial service last weekend. And now the silence sets in… Much to metabolize. Thanks to each of you for your emails and thoughts, even though my presence on this site has been so recent and minimal - but I've been watching and reading from the audience for several years. I have a picture at home which I bought for my husband many years, a humorous drawing of a sea captain having a cup of tea, sitting in his boat up on dry land, and the title of the picture is "Waiting for the tide". I'd say it has turned.
My condolences also, clf. You did everything possible for him, and he is now free of this terrible disease. I am happy for you that you were with him at the end. Knowing you did everything possible, and that he had such good care should give you peace. Kindest best wishes.
Sincere thanks to each and every one of you. And from following this site for a long time I sort of feel like I know many of you (from your postings on various topics), and I certainly do know the heartache you each face on a daily basis. So I send to each of you my very best wishes and kind regards.
Dear clf, I read your post from october 12th and feel like every word you said was meaningful to me. I am sorry that your husband passed. I am in the same situation and feel lost every time I see the end approaching. My condolences to you and peace.