Advanced stages go this quickly?

Slv

Just lost my precious Dad. 7 years Alzheimers and was progressing.  Needed help with dressing, gait getting unsteady , but still talking and feeding self. Wanted to just be on couch a lot. Was absolute sudden when drooling and couldn’t swallow. Speech slurred when asked to repeat sentence. Thought was stroke but hospital said no stroke . Got weaker over 5 days and moved to hospice and passed away in 2 days. Totally unexpected that this would happen like this . Thought would be more progressive ,  has anyone experienced it this way ?  I am so heartbroken it all went this way. I miss him so much and replay everything if I should have done something different or did I miss something that would have changed this outcome?

TessC

I am sorry for the loss of your dear father, Slv. It is not easy to lose a parent whether it is fast or slow. I'm sorry you did not have more time with your father.

 I have lost both, one pretty fast (stroke) the other very slowly. My mother lived with me for 15 years and my husband and I took care of her till the very end. It was traumatic and very hard for us and we sacrificed a lot, but felt we did the right thing keeping her with us. Your father was spared a lot of suffering and indignities and though we never want our parents to die, God chooses the time and we have no control. Nothing you did caused him to become ill, and nothing you did or didn't do caused him to die. He was loved and that is what matters. He knows that now more than ever.

You are early in the grieving process so be gentle with yourself and heal in your own time. Come here often to share memories and we will cry and rejoice with you. Take good care!

Slv

Thank you TessC for your kind and sweet words..... words I needed tonight.

TessC

How are you doing, Slv? Has your father's funeral been preformed yet? We had the most bitterly cold, rainy day for my mother's but it was till good to see her friends and family gathered to celebrate her life.  I'll never forget the kind people who showed up! Sending hugs and blessing your way.

Slv

Yes, same here. Seeing old friends and family and feeling the love and appreciation for a life well lived meant so much . He had a veterans ceremony also that brought such proud tears. Thank you so much for checking up on me , It means a lot!

Sunshine days

Dear Slv,

What you wrote is so similar to what happened to my sweet mama who passed away just last Sunday....she had dementia for almost 10 years but progressed very slowly up until about 6 months ago when she began having more difficulty with communication and thought processes and began to fall frequently. I moved her to a Memory Care facility in February after a series of falls landed her in the ER 3 times in 10 days. She was never the same but still seemed stable physically speaking, though rapidly declining mentally. There was yet another fall on a Monday, which resulted in a fractured ankle. Within 2 days she was transitioning to actively dying and was put on morphine so was basically unable to speak or respond much to us. She passed away 6 days after the fall. I am still reeling from it and ask myself the same questions you are, but deep down I know I did everything I could and gave her the best quality of life I could under the awful circumstances we were dealing with. My heart is broken and I miss her terribly. I will pray for you, I know how extremely difficult this is. God Bless.

KawKaw

Siv,

I grieve with you.

My mother galloped through the later stages, but was still able to do some thinking and was able to converse and make simple decisions at the point when she died.

It has been a few months past a year since she died. 

Be gentle with yourself.  Grief doesn't progress in a linear fashion for me.  This might be the same for you.

W.A.

My father recently passed away. Both my parents, who were married for 56 years,  lived in a Memory Care apartment. Mom has Alzheimer's and my Dad had vascular dementia. My Mom asks me when I go to visit her where my Dad is, and says she hasn't seen him in a while. When I tell her he passed away she crumbles and it's like the first time hearing the news of his death. This breaks my heart. What am I suppose to tell her?  She knows he's gone, but doesn't have the capacity to remember he has died.

TessC

W.A. Sorry for your loss. It is sad your mother has to relive her husband's death each time she is reminded of it. It happens to a lot of our parents living with dementia that they cannot remember the loss of their spouse. To be kind some of us tell a little fibblet like, "I don't know, but I'll check for you, but I'm sure he/she is fine. Here's let have some hot tea, cookies, chocolate." That usually puts them at ease for awhile.

 My mom would always ask about dad around dinner time and I would tell her he was still at work and called to say he was OK, but would be late again and to eat without him. It always worked because it is the initial concern that they focus on and after that concern was addressed, they will usually forget about the matter and go about their day.

It always best to acknowledge their concern, talk about it very briefly and then redirect them to another subject or activity to refocus them onto something else. Good luck and take care!

cdn13

Hi Slv, I just wanted to say you’re not alone in this. My grandmother also went very quickly once things got really bad. She had several years of mild memory issues, to going downhill throughout 2021, and then started hallucinating and not recognizing my grandfather in the early months of this year. We thought she had a UTI or something and had her on antibiotics and waiting for assessment to get her into long term care. In February she stopped eating for a few days. In retrospect, we think she forgot how to eat like your dad. We took her to hospital and she died a week later. 

It was horrible and sudden. All the resources about dementia talk about how slowly it goes and that has made this hard, because that’s what we expected and thought we had more time. Two of my dad’s siblings from out of town didn’t get to see her before she died because of that. We thought the hospital would stabilize her and she’d move to LTC because they put her on the crisis list for placement. In fact it was people on this forum who were the first to tell me she was actively dying when I described what was going on. 

Sometimes it happens this way though, it’s not unheard of. I know we’re fortunate that she had a fairly good quality of life until those last couple of months, and that she wasn’t in late stage for years like many suffer with, but it’s hard in a different way.

chrisp1653

Over my time spent here on these boards, I have often seen postings about Alz / dementia stages 1, 2, 3, etc, but I have never really understood the terms. Is there any good reason to attempt to quantify the downhill slope that ultimately ends with the death of a valued loved one ?

In my case, that loved one was my wife, Barbara. I never had any idea what number should be attached to her condition, but I just dealt with her increasingly greater number of symptoms, and tried to love her as much as I could. 

In the end, she went from a reasonably alert woman to an almost comatose state very quickly, and then passed just one week later.

I truly thought I was prepared for her passing, but as we all know, grief takes more forms than there words in the dictionary, and I was lost for the first week or so.

I remember calling as many of her old friends as I could, and trying to process the emptiness of our house. You know, it's amazing how much one person can make a house seem full, and vibrant.

Now, 1 year, 4 months, and 19 days later, - more or less, I am pretty much used to the quiet. My days are filled, albeit somewhat differently than they used to be, and I am finally sleeping better.  I have even discovered that love does not end, but can, and does, go on.

My deepest sympathies go out to you, Siv, and all of the rest who never wanted this to happen. You - collectively - and I, belong to a unique club of people who can proudly wear the badge of caregiving.

Blessings to all,

Chris

SandrasBaby

Hello dear fellow caregivers,

My husband and I have been caring for the past 6 years  both of my parents who have dementia. Mom diagnosed 2009. Dad in 2018 after a hemorrhagic stroke.We retired quickly in 2018 so we could care for them 24/7 and not have them placed in a nursing home.

I'm terrified even to write this. I'm not understanding what is happening to my mom. The doctors tell me it is normal for extended sleep in advanced stages. Yet as of last week my mom is now sleeping most of the day. She falls asleep while eating. Her eyes are glassy. My sweet precious mother can only stay awake for perhaps a few hours a day. 

Have we run out of time? I have been in tears each day. I cannot function. During these past 6 years not a single day has gone by that I'm not grateful to God for this time with my mother. I love caring for her. I'm terrified and cannot strengthen myself, prepare myself for this change as I've always done before as God has guided my steps.

To all of you... during my journey each day I pray for all caregivers on this earth for strength, comfort, light and love. Thank you.

eggharbor42

You didn't miss anything you could have done. Your presence is what counted. I too found my wife's late stages to go very, very rapidly.

janhu

My significant other was diagnosed with dementia of probable Alzheimer's type in June 2021. Although he was active and alert until January 2022 (riding a bicycle for instance), he died in early November. This was after being debilitated by serontonin syndrome or neuroleptic malignant syndrome in Feb. 2022. They never did provide a definitive diagnosis (though I suspect it had to do with over-medication). So, yes, it can go fast: 16 months in my case. The medical providers did not clue me into how quickly the disease could progress. We need better guidance from the medical profession to prepare us for outcomes such as I experienced.

RitaRae

Just lost my husband three days ago.  He had been in the advanced stage for at least a year and a half.  He started pacing and getting out of bed all night and just pacing.  I had no idea that this symptom meant that he was in pain.  I took him to the Dr. on 1/13/22 and he said he qualified for hospice.  Pathways came and visited us and took all of the information they needed and said yes he qualified for hospice.  I had already reserved space at Aspen assisted living and was going to move him over the weekend.  By Sunday night 1/15/22, he was experiencing terminal agitation.  By 1/17/22, he was at Pathways.  On 1/23/22, he was gone.  He had AD for 8 years and even so I expected him to live longer.  It was quite a shock.  I'm very glad he is no longer suffering.  But quick it was.  RitaRae