The rest of the story
DH was diagnosed with lung cancer -- aggressive -- the first week in March. There was nothing to be done. The sudden worsening of memory, vision issues, abdominal issues, lessening appetite and energy - it was not from a progression of his neurological disease but the cancer accelerating the neurological symptoms. He was home with hospice help and was able to be home until about 48 hours before the end, when they could not control his pain without inpatient hospice. I moved into the room with him. He wasn't alone. Having Alzheimer's and Parkinsons and a host of other medical problems was agony for DH who was aware of what was happening to him. It was agony for me, too, watching him leave in pieces and not being able to protect him from the fear of losing himself. He did not go to the end of the Alzheimer's and Parkinsons, and for that I am grateful, but whether it was from that or the very virulent cancer spreading like wildfire, his death has shattered me to the core. I knew it was coming, but still my soul has been shredded. Now I find myself walking a different path. This is not like losing parents or siblings.
I know that you are all still struggling with your spouses' or partners' disease, trying to love and support them, trying to maintain dignity and independence for as long as it is possible. It is a Herculean task. I am grateful for all of the kindness and support you gave to me during my journey with you, and you and your loved ones will be in my prayers. Take care of yourselves, and thank you. I think now I am supposed to change groups -- Be well.
Comments
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Safta, I am so sorry for your loss. Thank you for the update.
I don't know that you have to change groups. Everyone is welcome on these pages no matter where you are in the journey.
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Safta, I can’t tell you how sorry I am that your husband has passed. I guess you are picking up the pieces and that is heartbreaking. I offer my condolences and am so sorry. I would like to echo what M1 says, stay with us, there is always room at the table.1
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Safta, I'd like to send my condolences. You're right, this is not the same as losing parents or siblings. I just lost my wife on June 24. Whether or not you continue with this form, I send my best to you. I'm sure you will find support whatever you decide.1
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Safta I am so sorry for the loss of your dear husband.
Feel just like the others, you are welcome to stay here as long as you want to. We all need each other.
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Safta, I am so sorry for all the suffering your husband and you have gone through. It is heartbreaking to see the least. No more pain for your husband now, but your pain will last for some time. My prayers for peace and strength for you and your family. Be kind and gentle with your heart !0
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Dear Safta, I am so very sorry for all that has happened and for your deep loss. You are right, the loss of a spouse is a different dynamic altogether.
Safta, you do not need to go to a different place to Post. Once part of this large electronic family, you are always part of it. Please do continue to come here as often as you wish and feel like doing and share with us. You can also Post on any of the other Forums too, no restrictions.
May your heart begin to heal knowing how well you cared for your beloved husband; you went the entire journey, faithful to the end of his life.
Sending warmest of thoughts your way and may peace and solace find you soon.
J.
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Salta, I am so sorry for your loss. My heart cries for you. I hope you will stay on this forum because I want my husband to stay in our home and I’m sure I will need more advice. The only reason I would place him anywhere would be if he became aggressive and dangerous. He’s somewhere in stage 6 now, needing help with eating because of trouble swallowing hard or chewy foods, dressing and undressing, showering and is incontinent much of the time. It’s already so isolating.2
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Please accept heartfelt condolences on your husband’s passing, Safta. What an ordeal you and he have been through. His suffering is over, and I hope you will find peace and acceptance in the weeks and months ahead.
You will always be welcome here.
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Safta, I am so sorry for the loss of your LO. Sending hugs and prayers.0
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Safta, I am saddened at the loss of your husband. For most of us, the end is inevitable even if we don’t know when or how. One of the great things about this forum is that no matter what stage you are in, someone here has been through it and can share experience and advice. Stage 8 is what they call your stage of his awful journey. Your husband has passed, but you are still suffering. Please stay on the forum and help those of us who are following behind you.1
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Dear Safta, I am so very sorry for all the things that have been so hard on you and your husband and for your deep loss. I have always felt that taking care of a spouse with Alzheimer's or dementia is much different and harder than taking care of a parent. And it's much harder losing a spouse then losing a parent or even a sibling. When you lose your spouse, you lose half of yourself and your support system. I do pray that you can get help with your lose either through this board or another board or some type of grief counseling. God’s Blessings to you as you start on a new journey in life with out him. Richard
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Safta I am so sorry for your loss. And keep posting where ever you feel like.0
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Dear Safta, Please accept my heartfelt sympathies on the passing of your loved one.We can never be ready even when their transition means freedom from dementia or other cruel disease. May he rest in peace and may you find healing and peace, in time.0
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Thank all of you for your support. I will continue checking in. I did contact the social worker at Hospice, and they are starting a new group for widows/widowers on the 20th - I'll participate, and have found the couple of individual sessions with the counselor there to be helpful, especially confirming that what I am experiencing is to be expected. Thank you again.1
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MaggieMae, thank you for your kind words. Home is best because it is what is familiar and known. Please know that when aggression occurs, it is NOT them - they would be horrified if they knew. It is the disease, and fortunately, there are a couple of really good medications that can control that. Seroquel was really good, coupled with Lorazapam as needed, and after it built up, enabled me to keep my DH at home. The hospice doctors know about it - some meds, like Haldol, that are routinely prescribed, don't help patients with dementia but might actually make the agitation worse, so make sure that your neurologist weighs in. I hope it doesn't happen, but if it does, there are meds to help.2
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Thank you. We made a commitment to each other, and were devoted to each other always. He knew I was with him.0
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I am now almost 20 months into the next part of my life, without DH. This journey is like no other. For those following behind me, I found the following:
- Everyone's path is their own, and each person needs to figure out what is right for their own healing. It is fine to ignore the advice everyone wants to give - use what helps you and ignore what doesn't.
- People who have not lost a spouse, especially to a disease with cognitive decline, cannot truly grasp this.
- Some grief groups have professionals guiding them and some are more social with lay leaders. I found the groups with professionals to be more helpful for me; my friend found a social group helped more. Find what is best for you.
- I so miss DH. This sucks. I have started having more human contact, joining mah jongg group and canasta with other ladies, some of whom are widows, and that helps. Volunteering helps as well. Moving towards life helps.
- With time, the memories of him healthy are replacing the ones of him sick, and that has helped a lot.
- Hang in there.
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Thanks for checking back in. Your insights are appreciated.
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God bless you
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My sincere condolences on the loss of your husband, may you find peace in the days ahead.
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I am so sorry. Prayers for your peace and comfort.
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Thank you for sharing your lived experience. At one month into stage 8, I have much to learn. Alas, I am not at the stage yet where the memories of my DW healthy are replacing the memories of my DW sick. Too soon, I know.
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Great to hear you're moving on! May your days ahead be full of joy again!
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I am sorry for your loss.
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Thanks for checking in and sharing your experience. May God bless you in the new year with peace and joy.
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Losing people we care about is one of life’s hardest experiences. But being able to look back on the good times shared is a blessing.
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I am so sorry for the loss of your DH.
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This coming week will be the second anniversary of DH's leaving. The second year has been harder than the first, because the shock and numbness wore off and reality set in. Fortunately, the counselor at Hospice's grief group focuses in year two and so that has been very helpful. I have moved to be near my son, and his family (including grandchildren) and that has been a help. Being out of the house, having to stay there without DH, has been good because everywhere I looked I saw him sick. I also lost my dog, age 16, about 10 months after DH, and that was awful. He was also grieving and declined after his daddy left; he would not go into the bedroom, even though I switched out the furniture. At this point, I am following my loving dog's example and getting different surroundings, and it has helped. Cognitive diseases are the worst. We say goodbye to them in bits and pieces, while trying to maintain their sense of self. They know, in the non-late stages of the disease, what is happening, and it is so hard to watch them knowing that they know. At this point, though, it is my reality, and I am focusing on what is next. My DH was the one. I will always adore him, what we had, how we loved each other and the blessing I had to have him love me. But I will be with him soon enough, and in the meantime, I will spend the time until then carrying on. As I have said before, do what you feel is best for each of you, and not what others who have not been on this road decide is best. Everyone's path is their own. I believe that I have been so fortunate to have experienced the love I had with DH. Many people never find that. I will always love him and grieve the loss, but be grateful for the time we had. And if I could reverse things and continue having him in my life, even in a caregiving situation, I would in a heartbeat. It was my greatest honor to be his wife, and to help him as I know he would have helped me - we were a team. Our souls were bonded together as one. It was a good marriage, which most people don't experience. He was the one.
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In time may the good memories supplant the struggles of the journey you traveled together.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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