Ten years of living with dying

Crushed

It's over ten years since DW was diagnosed with MCI  by doctors who simply did not want to call it early onset Alzheimer's in a 58 year old physician.  She has gone from being a world famous physician + mother+ spouse to being a shambling shell  who can be hand fed  and walks and  nothing else.

The last 3 years and 10 months she has been in Memory care.   I know I have it better than most   I have a good therapist , two wonderful children and 5 grandchildren . Cost of care is paid for by her retirement.

 but  Ive never been so alone in my life.   I am coming up on 50 years since I fell in love with her.  Ive shared lots of stories here.  I just feel like the future is bleak . 

This disease sucks eight ways from Tuesday It sucks the life right out of you

LilySue

Your thoughts are my thoughts. Married 54 years, the last nine following a stroke that caused global aphasia with a gradual decline into dementia.  He now does not seem to recognize me, and needs help with every aspect of life. I have a live- in caregiver couple with two preschool boys so our house is a bit of a circus. I'm glad I can have him at home, but I grieve every day knowing there is no happy ending, only a continued slide to nothingness. He seems to have two phases, sleep or agitation. I'm sad so much of the time as though grief is a permanent part of my being. As M. Scott Peck says, "Life is difficult." More difficult for some than for others.

loveskitties

Crushed, you have been blessed to have a wonderful woman as your wife.

Are you grandchildren old enough to remember her as that wonderful lady, or will their memories only be of the last few years?  

The reason I ask is, unless it is too painful for you, it would be a grand tribute to her, if you were to write her story for them.  She deserves to be remembered as you remember her.

Some folks find the memories help to deal with the sorrows of today.  

It would also help fill some of those lonely hours with a worthwhile project.

Just a thought.

Wishing you best days possible

abc123

I hate this disease Crushed. I am sorry that you have lost the love of your life. I am a firm believer in the power of love, the love between a man and a woman. That love turns us into a warrior who can conquer all things. I lost my "love" eight years ago to cancer. Towards the end he was just a shell of his former self. I miss him so much it hurts my heart. The year after he died is just a blur. In the two years of his disease and the year after his death, my mother was quickly being devoured by her disease. By the time I overcame losing the love of my life I had already lost my mother to alzheimer 's . In three short years she was gone emotionally, she was already a shell. I couldn't be in both places, I couldn't be with her, I couldn't help her, I couldn't comfort her while she was losing her mind. I would have been there for her, been with her. We were always very close. She was only 18 when I was born. There was a special bond between us. We were each other's favorite person in the wide world and I wasn't available when she was losing her mind because my husband was dying. I can't seem to let that go and it's tearing me up. It's too late. I can't get her back and I can't get John back. I feel the pain that you feel. I'm sorry Crushed. I'm sorry for your pain.

Bhopper

Crushed 

Nothing I can say except I hope you know your willingness to share has helped me countless times as well as others I am sure. I hate this disease and it’s destruction of lives. This is my rambling way of saying I don’t know what to say but my heart hurts for you. 

Mint

Crushed I am very sorry.

Pam BH

Crushed, I echo everything BHopper said, especially my heart hurts for you.  Your posts have not only encouraged me but been so helpful as I navigate this terrible disease my DH has.  I think the idea of writing a memoir for your grandchildren is a wonderful idea as a tribute to your lovely wife

Crushed

DW is a very well known person in her field so she has Wiki pages and the like.  I have many thousands of photographs and movies back to 1972.   her brilliant and famous mother died young (57)  So I know what it is like passing on the family lore.  For  myself I treasure the moments when the brilliant driven medical professional showed that she was also a "fun girl". 

  

jfkoc

and while you are at it write a cookbook and include any memory associated with the recipe. 

I did a cookbook for my daughter in law. I asked people who had been a part of my son's life for a favorite recipe. I then added a story to each.

She said it was the best gift she had ever had.

I found that doing something that involves focus can really help but it does not keep the aloneness from striking at random. Nothing will fill in the hole left by my husbands death.

Crushed

DD#1 recipe for Thanksgiving Turkey

1) Call my Dad

2) Tell him how many people , and when you need the turkey

3) remind yourself that he makes cranberry sauce but is opposed to dressing

4)  Wait for Doorbell to ring

5) Open door and a wonderful turkey arrives

6)  Have knives out for him to sharpen even though he brings his own

DD# 2 recipe    Call DD #1 and ask when is dinner

jfkoc

That is exactly what makes a great cookbook...lol

Paris20

I used to think that the worst way to die was cancer. My father suffered greatly because of gastric cancer, but that was for a total of four months. As Crushed pointed out, many of us have been living with dying for many years. A friend asked me what my husband’s stage number is. I told her those numbers are not etched in stone. My husband can be almost any number at any time. The bottom line, however, is that there will be decline until the end, that it will take years, and that I never know when a new and horrifying symptom will make an appearance. This week my husband started talking gibberish, often ending in a question. When I replied that I didn’t know the answer he became angry and cursed at me. Someone should do a stage analysis of what happens to caregivers during this horrendous time.