Well the journey has ended for DH and a new journey begins for me...Since the beginning of the month I had been receiving almost daily calls from the care home to tell me DH had fallen...Fortunately he never sustained any kind of injury but he was seen by the occupational therapist who recommended for his safety that he transition to a wheelchair so on October 5th, we started the process of having him measured for wheelchair and the OT said she would call me in the next week or so...the doctor had ordered bloodwork for DH as he had begun having tremors and his balance was getting worse and the bloodwork would be done on the 11th or the 12th...on the morning of the 11th the speech therapist called me to discuss a diet change from mince to pureed as he had a choking incident the prior weekend and she said she would check him on Friday (today) to watch him while he's eating to verify he needed the diet switch...We were discussing this on the phone at 1130 on Tuesday morning...Shortly before 2 the care home called me to let me know hubby was experiencing some respiratory distress and did I want him sent to hospital as his care directive was comfort care only...I said no hospitals for hubby...I called my daughter and my mom to let them know and headed over to see hubby...Got there at 215 and daughter and mom got there shortly thereafter...I was met outside his room by the care manager who said he was having some difficulty beathing and his oxygen was low so they were giving him oxygen...I went in his room and he was struggling but didn't appear to be uncomfortable...slowly the staff started coming in to his room to see me ... his aides were saying they couldn't believe the turn of events and that he had eaten all of his breakfast and all of his lunch ( and he gets double portions of every meal) As more and more staff came in I finally asked the social worker if this was the end and she said yes she believed it was...He passed within 45 minutes of her saying that...I cannot wrap my head around how you can be finishing all your lunch at 1 oclock, on oxygen by 2 and deceased by 4 with no signs of a fever or illness...I am stunned...I felt sure that I had at least 2-3 years left with him...DH was only 65 years old and dementia diagnosis was less than 3 years ago...I guess i should be thankful he didn't waste away for 15-20 years, no scratch that, I am thankful for that and that his passing was relatively peaceful and was very quick but am still in disbelief at how quickly it all happened...so now I am planning a funeral for 6 days from now instead of 2 plus years from now but I will endeavour to give him the best send off possible...but I still feel like this has got to be a dream...
That is a shock, and you must feel numb. It was a blessing for him, but hard on others. Sending you love and prayers and may you know full peace knowing that you loved and cared for him.
So very sad for you 29Scorpio, I send you my most sincere sympathy. You must be reeling from the shock so be kind to yourself and just keep telling yourself that this was a better way to end for your dear husband, so much suffering he won't have to endure. I wish you peace and strength for the difficult days ahead. cassie.
Your husband's case sounds so much like that of a dear friend of mine who died about a year ago, also only a few years after diagnosis with vascular dementia. He simply forgot how to swallow and died of aspiration pneumonia about a week after admission to a Hospice House. His wife has come through her loss great, as I hope you'll be able to do also.
29scorpio, my condolences to you. Your description of your huspand's passing sounds so similar to my husband's who died last month. He was only 66 and for a long time seemed stable with only small losses. Then suddenly it seems that some event happened in his brain and he developed balance problems, standing problems, choking, myoclonic seizures, axial rigidity, - a whole array of new and bizarre neurological symptoms. He stopped eating and drinking several days before he passed, but it all seemed so sudden and not at all like the very elderly demented patients in the unit who seem to fade away when they die. I wonder if we are looking at a different kind of dementia in these younger spouses and the way they die.
Be prepared during the funeral for all sorts of well-intentioned, but inappropriate questions, like "Did he know you?", "But you've been grieving for so long, that this must be a relief," "How many in his family had this?", "Are you having an autopsy?", "My grandmother had this, so I know what you are going through." and one that has become my favorite: "What are you going to do with all of your time now?" People mean well, but say the stupidest things. Pretend to spray yourself with Rain-Ex for dumb questions, and practice answers like, "What matters to me is that I've never stopped loving him," "Grief isn't that tidy," "Loss of a spouse is a whole different ballgame, so it is actually quite different," "Time?? I have a lot of healing to do." And some, like the autopsy question that our son got, was responded to with just a look (I can't believe you asked that). For the record, yes, I did have an autopsy, but that is strictly family and physician information.
99% of the outpouring was caring and loving and it buoys you up through the grieving process. When I feel down, I pick up the sympathy cards and reread the personal notes in them, or look at the visitation book and remember who came. Friends have reminded me that I did everything I could possibly do to care for my husband. This is important because doubt sometimes creeps in (did I do enough?), and you shoo that doubt out the door by saying to yourself what your family and friends have said to you, "(I) did everything (I) could and more in caring for him."
Tanis, I'm very sorry. It must be stunning as you say to turn like this so soon. Unlike my Dianne who hung around long after I was warned the first time. She was comfortable and she ate but that was all she had in those years. There's nothing good we can say about any of the timing.
I am very sorry . I understand the shock and loss for you while also feeling gratitude that his suffering is over.
My husband was 67 when he died. Also, a very quick decline . We were discussing a nursing home from the assisted living on Monday . On Tuesday. he stopped eating and by Sunday he was gone.
Three years after diagnosis of moderate stage. I too, thought I had years to go.
You will have the strength to get through the funeral. Then you will probably be exhausted!
I hold onto gratitude and hope which has helped me tremendously. I hope you have family and friends to support you.
29scorpio, I am so very sorry for your loss and hope it will help that so many others here have walked the walk you are now on. Our stories are so similar - my husband died last year at 65, less than three years from his official diagnosis. He, too, was falling almost daily and fitted for a wheelchair just a few weeks before his death (although we didn't know that at the time). He had been a good eater as well, but in the final couple of weeks he lost the ability to chew and swallow and the resulting pneumonia took him. It is still so difficult. What a miserable disease this is and, as someone else mentioned, I wonder if there is something different in the younger cases or a particular strain of dementia that takes them so quickly. In hindsight, I wish I had arranged for an autopsy so we would have known exactly what was going on. Please take care of yourself now and let others help as much as possible.
nbgirl I could tell your story as mine. We had so much in common in our husband's path.
I will tell you I donated my husband's brain for research to Columbia University Hospital in Manhattan where he was treated. This also provided me with a detailed autopsy. The results indicated Alzheimers as the cause of death.
i was just reminded today by something I received in a grief recovery session : " Recovery from grief is not a smooth uphill battle. " So don't be discouraged by the mood swings of grieving, but realize they are part of the road to health."
Know that we do learn to find joy in life again as you go through these very difficult days Scorpio.
Thanks very much, Lorrie. I guess where I second-guess myself with respect to an autopsy is that it would have been good to know if there was something else going on that took him so quickly......perhaps he had frontal lobe dementia as well. I have no doubt that he had Alzheimer's - the neurologist would show me his MRI scans, putting the most recent one next to a previous result and the brain shrinkage was plain to see. I trusted the doctor, perhaps too much, and maybe did not ask enough questions, although with all of the CT scans and MRI's that he had they surely would have spotted any other conditions. Also, my husband's mother died from AD as well, although she was diagnosed at 82, not 62, and even though there were other cases in her family they were all over the age of 80. My husband was the only one with early-onset and that is naturally of concern to my children. I do wonder why his decline was off-the-charts fast but I guess there are just no answers to some things in this life.
Thanks again - I do have many good days as well but there are certainly those mood swings you refer to - I find the loneliness the most difficult. Take care.
29scorpio, I am so sorry to read of this. I can't even begin to imagine what you must be feeling, it would be such a shock. You have my sincerest condolences.
I am so sorry for your loss 29scorpio. A new journey has begun for you. Stay connected here as the reality slowly sinks in. For a while the numbness will mask your grief but as the numbness leaves we are here for you. My hubby went quickly also and yes it is a blessing. God bless
Thank you all for your kind words...I know you all know what a miserable journey this disease is...but I am thankful that for him at least it was quick and he never seemed to have an awareness that there was something wrong right from the get go, so as far as he was concerned everything was just peachy and that is A-OK by me...I too, as others have done before me, thought I would want an autopsy done, but when it came down to it, I just wanted him to be whole and couldn't do it...And I am fine with that decision, just as I'm fine with every other decision I made on his behalf that kept him safe and healthy for whatever time he had on this earth...Never in my wildest dreams would I have believed that I would bury my grandfather on the 8th and my husband on the 20th...I'll miss them both terribly
29Scorpio, I'm so very sorry for your loss. My thoughts and prayers are with you to give you strength through the funeral and afterwards in dealing with all of this. I can't even imagine what it's been like for you.
Look at how much we all care that we did all we could for them (which is good) and think about how good it would be if we could care that much about ourselves afterwards. It's too bad almost no one thinks like that, let alone does that. What a better world this would be if we could turn that kind of supportive caring to ourselves afterwards where God knows we need it.
I understand your shock at the sudden turn of events as we had the same experience. I also thought we had a couple of more years but was also relieved that he didn't have to endure anymore of the decline process. I am glad you had family with you and that you were able to be with him at the end. Be very kind and patient with yourself now as you deal with the "after" and all you have to deal with for the next few days. So very sorry for the loss of your husband.