1. < Caregivers: Dementia

MCI to Dementia: What can I expect in the future?

Posted by desbabydoll @desbabydoll, Aug 23, 2022

I am caring for my husband. He was diagnosed with with cognitive problems related to multiple traumatic brain injuries. I am seeing a decline in function. I knew it was coming. He has multiple physical health issues in addition to the MCI. His family is away, I feel most think I am exaggerating his decline. I watched him not being able to make a call yesterday. It worries me. He has admitted that he can't remember some of our times together. He is 21 years older than me. Any advice on what to expect in the future. He will be 60 in less than 2 months.

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Julie Chitwood | @billchitwood | Dec 10, 2022
In reply to @centre "This is wonderful news, I’m so glad for you both. Now, when they want to schedule..." + (show)
@centre

This is wonderful news, I’m so glad for you both. Now, when they want to schedule a Hospice volunteer and a chaplain (non-denominational) visit, please say, “Yes”, and use that time to take a walk, wander around Target, meet a friend, etc. The aide can do anything related to Bill’s care, so take advantage of that- separate out his laundry, show her what he likes to eat for snacks and a meal if the aide’s visit covers that time. The social worker will be a big person of support for you- you can vent and cry, no need to be strong.
My dad had Hospice, he accepted care, showers, food, and meds SO much easier from the staff than from my mom.
An aside, he served in WWII in Europe and saw terrible things related to combat and several Holocaust concentration camps, which he NEVER talked about with us. After his death, his main nurse, aide, and the social worker told us that he had spent hours unburdening his heart with what he experienced and his anger and frustration he felt while a very young soldier.They told us Hospice patients will often do this “life review” with staff who become close, they think they are burdening family members to talk about it with them.

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We lost him sometime in the middle of the night. I called hospice very early and they took care of everything. In fact Owen had a pillow for his head and he was draped in a Flag as he had served in the Navy during the Korean War.
He looked so peaceful. The last few days had been so hard watching him and unable to help other than to make sure he wasn't suffering pain. From Monday afternoon he never seemed awake or aware.
Thank you all for your support.

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3 replies
centre | @centre | Dec 10, 2022

I'm so sorry to hear the news, but glad that Bill is now with his mom and dad and other loved ones who have gone before. You can take great satisfaction in knowing your efforts, under very trying circumstances, made it possible for him to leave this life with dignity, surrounded by love, without pain.
I find alot of comfort in the YouTube videos of Casting Crowns song "Scars in Heaven", the refrain is that "the only scars in Heaven are in the hands that hold you now".
I'm praying for you for this next week and then beyond. Take good care of yourself, you done good, now you can rest.

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janet7 | @janet7 | Dec 10, 2022
In reply to @billchitwood "We lost him sometime in the middle of the night. I called hospice very early and..." + (show)
@billchitwood

We lost him sometime in the middle of the night. I called hospice very early and they took care of everything. In fact Owen had a pillow for his head and he was draped in a Flag as he had served in the Navy during the Korean War.
He looked so peaceful. The last few days had been so hard watching him and unable to help other than to make sure he wasn't suffering pain. From Monday afternoon he never seemed awake or aware.
Thank you all for your support.

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“This is not a goodbye, my darling, this is a thank you. Thank you for coming into my life and giving me joy, thank you for loving me and receiving my love in return. Thank you for the memories I will cherish forever.” –
……… Unknown

Prayers and God’s blessings for you Julie.

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Dec 11, 2022
In reply to @billchitwood "We lost him sometime in the middle of the night. I called hospice very early and..." + (show)
@billchitwood

We lost him sometime in the middle of the night. I called hospice very early and they took care of everything. In fact Owen had a pillow for his head and he was draped in a Flag as he had served in the Navy during the Korean War.
He looked so peaceful. The last few days had been so hard watching him and unable to help other than to make sure he wasn't suffering pain. From Monday afternoon he never seemed awake or aware.
Thank you all for your support.

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I am deeply saddened for you over your loss of Bill, @billchitwood

I wish you ever more strength, courage, and peacefulness in your coming new journey.

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1 reply
Julie Chitwood | @billchitwood | Dec 11, 2022
In reply to @IndianaScott "I am deeply saddened for you over your loss of Bill, @billchitwood I wish you ever..." + (show)
@IndianaScott

I am deeply saddened for you over your loss of Bill, @billchitwood

I wish you ever more strength, courage, and peacefulness in your coming new journey.

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Thank you. Even though a blessing for him it is hard not to keep going into the room to check him and see if I can get anything for him.

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1 reply
wmehan | @wmehan | Dec 11, 2022
In reply to @billchitwood "I kept seeing a decline in my husband. My daughter didn't realize how bad it was..." + (show)
@billchitwood

I kept seeing a decline in my husband. My daughter didn't realize how bad it was until we moved in with her. His kids didn't think anything was wrong as they only saw him for 2 days about once a year. He was very good at 'showtime'. But that can only be managed for short periods of time normally. And people who don't live through it don't normally understand it. I now keep the tribe updated on how he is doing. Some of his first signs of dementia were having problems with technical things - phone, TV remote, computer, etc. He couldn't fake those as easily as forgetting something.
Make sure to find time for yourself (I started Pilates at almost age 82). Find humor wherever possible. This site is wonderful because you can just let go with all the frustrations and everyone understands - been there or headed there.
I have just applied for Phoenix Dial A Ride for Bill (he can't drive and I shouldn't any more so gave up the car). With Dial A Ride I can go with him as he can't go out on his own. Rarely remembers his address any more. I also use Uber when needed.
Socialize - some caregivers commit themselves totally as their loved one demands all their attention. This isn't good for either of you. Bill won't go to family functions and tries to 'guilty' me into not going (is is fine being left alone at this point). This is something he has always done. I have learned to ignore him - I go and have a wonderful time - and ignore his 'silent' punishment when I get home.

Prayers and good thoughts for both of you.

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I think you just described my life. My husband doesn’t even want to talk on the phone. I think he knows and is afraid he might slip up and they would know he has no idea he talking to.

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janet7 | @janet7 | Dec 11, 2022
In reply to @billchitwood "Thank you. Even though a blessing for him it is hard not to keep going into..." + (show)
@billchitwood

Thank you. Even though a blessing for him it is hard not to keep going into the room to check him and see if I can get anything for him.

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I can understand after being his caretaker for many years you would still have your mind set on taking care of him. How do you feel when you discover he isn’t there?

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1 reply
Julie Chitwood | @billchitwood | Dec 11, 2022
In reply to @janet7 "I can understand after being his caretaker for many years you would still have your mind..." + (show)
@janet7

I can understand after being his caretaker for many years you would still have your mind set on taking care of him. How do you feel when you discover he isn’t there?

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Relieved that he is no longer suffering. Even when he was alert it was so hard as he had such terrible uncontrolled diarrhea. He hated that I had to help him clean him up as well as the floor and toilet. I know that it will hit much harder later on. At the moment keeping very busy doing all the things that need to be done. Which, for Robin and me, is extremely helpful.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 11, 2022
In reply to @billchitwood "Relieved that he is no longer suffering. Even when he was alert it was so hard..." + (show)
@billchitwood

Relieved that he is no longer suffering. Even when he was alert it was so hard as he had such terrible uncontrolled diarrhea. He hated that I had to help him clean him up as well as the floor and toilet. I know that it will hit much harder later on. At the moment keeping very busy doing all the things that need to be done. Which, for Robin and me, is extremely helpful.

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@billchitwood Those of us who have been in your shoes, are nodding our collective heads. We get in to such a routine we may not even notice how taxing and time-consuming it has been. It is simply how we lived. As the hub-bub and "got to do this, get this taken care of" duties start to wane, you might find big chunks of time with a seeming void of purpose. May I suggest you keep in contact with your hospice team, as they have resources for you even now, for as long as you want to ask their assistance.

I daresay your post over the last many months will serve as a journal for you, and you will recognize the strength you have showed us all.

Gentle hugs,
Ginger

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teacher502 | @teacher502 | Dec 11, 2022

This makes me feel very sad as I know this is a part of the journey that all of us will face with our loved one - and yet, somehow, we will go forward in life and continue to do the best we can. I just hope that I can have the strength to be a role model and an advocate for my sweet hubby in the way that you have. May God's peace spread throughout your body, and I hope for peaceful, quiet rest as you face the future. Thank you for clearly and bravely sharing this very painful part of your journey with so many. God bless!

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