I have no desire for this life without him

Sheila512,

I think a good post about meds. Yes, they are available and why not use any tool to manage and cope better. I would say any less the common addictive tools. Sheila, can you say how you came to use medications? Was that from mental health or personal doctor? I have read about the side effects as you described and the length of time to get them in your system.

I do hope we all find a place to be with our grief. I am amazed and continue to be about the profound power of our experience.

Paul M. ( two years just on the 25th)

 

I keep praying for when this grief gets easier, it will be four years inNovember, t helps to share each other's feelings, others that haven't been through loss of a beloved husband or wife canuderstand. I think of my husband almost constantly. Thankfull others on meds find them helpful, Lifting each of us n prayer through this journey,

 

( THIRD SENTENCE SHOULD START OFF. CANT UNDERSTAND)

 

[QUOTE=SORRY I HAVE VISION PROBLEMS, REALLY NEED TO TYPE CAPS. SORRY FOR SPELLING ERRORS

 

I know this is an older post but I've just lost my father to Lewy Body Dementia so I wanted to reach out and say that I can relate to the pain you're feeling. It really is an absolutely horrible disease, not helped by people including many doctors and carers not even knowing much about it. We only found out my dad had it a few months before he died, despite him having mild dementia and mild mobility problems for years. For my dad it progressed suddenly rapidly and he went from being mostly fit and well with mild dementia and mild mobility problems to dying within 8 months. Because his health kept declining we kept adjusting to his changing care needs but no medical staff ever warned us that he would die soon (perhaps they didn't know themselves) so it has been a devastating shock. We fully expected he'd be with us for at least about 6 months to a year if not longer. He was only 76. It's hard not to feel envious when I see elderly white haired old men happily walking through the park with good posture and good mobility walking their dogs. My dad never got to the 'elderly' stage and for years he was dependent on my mum. I think because my mum compensated so much for him, all of us were in denial about his illness. I would like to see much more awareness raised about this disease especially the early signs so that families can support their loved ones with this disease, and also for them to find a cure or prevention for it.

 

I am so sorry for your loss. It is so tough. In some ways your father passing within 8 months is a blessing but at the same time you were robbed of time with him. My father knew me every step of the way and in the last year of life he declined dramatically. The hospital visits were torture and just witnessing him ill still haunts me to this day. I have a difficult time looking at his picture and I hope one day I can look at it and not cry. The pain of his illness and his journey is heart breaking. Dementia in general not too many in the medical field know about. It is not cookie cutter. Some people decline rapidly and some live with it for many years. It is so frustrating science doesn't know more but there are so many diseases we don't know about. My sympathy goes out to you and your family.

 

Thank you. To be honest it doesn't feel like a blessing, because I would love much more time with him. The dementia journey for my dad meant that in the middle stages of the disease, we didn't get on very well because he became paranoid and would often accuse me of and blame me for things, which at the time I didn't realise was due to his disease. I didn't see him much for the past 3 years to give us space, as we got on better when we just saw each other during nice activities like garden centre and cafe visits. The rest of the time I felt happy and comforted knowing that he was with my mum and they'd go to nice activities together like dementia cafe, choirs, fitness activities for older people etc. Last Christmas my parents both went to Scotland together and spent Christmas with family friends, they also went on two more holidays and went to two funerals in different parts of the country, which shows how well my dad was. It was when the did the first lockdown that his health rapidly declined, because all of his groups and activities got shut down, and the only thing he was allowed to do was go for walks, which had started to become a struggle for him. Within a few weeks his muscles became very stiff and his walking slowed down. He would suddenly stop and 'freeze' in place which we found out was common with Lewy body Dementia. Eventually he couldn't walk and fell and went to hospital, which is when they said they thought he had LBD but they didn't officially diagnose it because they couldn't get a clear image of his brain from the MRI Scan. He came home and we established a good routine of activities for him plus carers. But then he had a stroke and ended up back in hospital. He came home and we had another lovely few months of caring for him and he was so mellow, peaceful, warm, friendly and really was living in the moment. All of the paranoia and blaming had gone and me and him got on really well again. I'd go round and put on his favourite music and we'd sing together, it was wonderful. We all just focused on what he could do rather than what he couldn't. I fully expected to spend Christmas like that with him. The problem was, that approach also meant we were all kind of in denial. So when he died suddenly we were in shock and we still are. I'm only in my 30s, so I feel very young to have lost a parent. I'm just so glad that my dad lead a long and full life, full of hobbies and activities he enjoyed, lots of nice holidays, happy cosy family Christmases, a happy marriage, children, a stable job, nice home etc. He died peacefully at home with his family, I'm very grateful that we were able to be with him. It just feels like it's not real, like I'm on a timeline that I shouldn't be on if that makes sense.

 

I completely understand. My dad could say some things that were completely out of character. That was hard to witness. My dad lost the ability to walk and I had to place him in a nursing home which broke my heart. I couldn't accept he couldn't be at home with his family. He ended up having a lot of health issues that made him go in and out of the hosptial for over 6 years. I suffered anticipatory grief, the loss of his personality and then not knowing when he would pass. Every hospital stay was torture not knowing. I walked him around in his wheelchair everyday and I am so grateful I had the time I had with him I also am soooo incredibly sad to know he went through hell. I was with him when he passed in hospice and that was so hard. We went through this journey together and it was a very lonely one. I too am grateful he had a loving wife and me to help him. I am glad that your dad could be at home and that you had special moments with him. I must confess for me it was torture to see the decline and in the last several months of his life he didn't even speak. I did the best I could and I beat myself sometimes wondering if there was something different I could have done but I am trying to be kind to myself. Focus on the good memories with him. I am trying to focus on gratitude and for everything I am grateful for and that is what helps me.

 

Hi Susan, I lost my husband of 40 years in December. He had Parkinson and also the Parkinson's disease dementia. I spent the last nine months caring for him. The last 2 weeks were the worst. This is a terrible disease. I can't get the images out of my head. I'm so lost now and all the plans I for our retirement years are gone.
My thought and prayers are with you.

 

The love of my life died December 28, 2022 after a long battle with alzheimer's and then he was diagnosed with stage 4 lung cancer. I hear all of your pain about your loss and I feel mine as well. I used to spend large amounts of time online in the alzheimer's support groups and website alz.org Now I am in this website forum. Anticipatory grief and now grief with his death. Grief just goes on and on. I truly did not understand how very stressed and tired I was when caring for him. His death brought relief and guilt. I was so very tired. He was too. I miss him terribly. I was relieved when he died that he was not suffering any longer. I was relieved that I was not suffering any longer. Silly me!!! I am still suffering. Torturing myself with guilt that I "should" not feel relieved that he is dead. On my days when I feel stronger I recognize that "even if" I would have blah blah blah the end would have been the same, He was going to die. Was I ready to say goodbye? Of course not. Are any of us? How do we prepare for something we have never experienced before. I know the reality is I did do everything I could to try and make his life easier. I did everything I could to help him. I could not save him. I could not make him better. And now after some weeks from his death I can say without breaking down and crying hysterically...I am grateful but sad that he is dead. I didn't want to see him suffer anymore. And then some days that old guilt thing rears its ugly head and I feel guilty that I feel that way...grateful that he and I are not suffering anymore. I am trying to remember the serenity prayer GOD GRANT ME THE SERENITY TO ACCEPT THE THINGS I CANNOT CHANGE COURAGE TO CHANGE THE THINGS I CAN AND THE WISDOM TO KNOW THE DIFFERENCE.

I cannot change that he is dead. I am trying to accept that. I think when I get to that space where I know...where my head moves to my heart...that there really was nothing I could have done to change the outcome then I will have serenity and peace. Right now it feels safer to me to stay up in my head and avoid that pain coming to my heart because if I can think about it then I won't feel it as much. I am very aware I am doing this. No one needs to point this out to me that I am choosing selective avoidance. I am okay with avoidance and letting things come to me slowly. I think it's important for me to not try and rush myself to make myself do this or that or think or feel this or that. I am just trying to sit with it.