Mom with ALS/ Dad with ALZ

[mellorama]

Hi all.... First I just want to say that this forum has been a lifesaver for me and my sister. My mom was just diagnosed in August and we have turned here for answers every time a new symptom appears or when we need to feel we are not alone. So thank you to whoever started this great place, and to all who keep it so alive and filled with compassion.

Here is our newest crossroads. Mom has rapidly progressed since her DX - bulbar onset - in Aug. At the time of diagnosis, she was the primary caregiver for my dad who has moderate ALZ and smoldering multiple myeloma. Now they have care 4-6 hours a day, she has a PEG and is on BiPAP almost 18 hours a day. He is still in the house sleeping in same bedroom, though not in the same bed, and he is, understandably, becoming more confused and agitated each passing day.

Mom's neuro says it is time to call in hospice. I am relocating and taking a leave from my work to be with them and to help navigate the journey ahead. I do not feel like we have really focussed the mental energy on understanding what is best for my dad - I'm not sure we really know how to handle the situation. Should we move him now to assisted living so he does not have to confront her death? He still recognizes family and has really good days, so it makes it hard to not tell him the truth. But, on the other hand, I wonder if the stress and anxiety on him will just make him worse. Plus, I think right now he makes it harder on her and her anxiety. They've been married 54 years and have rarely spent time apart, so I'm also afraid that that separating them may also be a huge shock. He keeps telling me that he wants her to go to the hospital to get better....

I know this is slightly off topic and there are no easy answers, but thought there may be others who have faced similar dilemmas.

 

[BethU]

Melissa, I'm so sorry for this situation. As if ALS isn't bad enough alone.

My husband has Parkinson's with Dementia, and like your dad, he doesn't comprehend the gravity of my situation. He is resisting our moving to a care facility ... he thinks I'm doing just fine ... but my solution is for both of us to stay together as long as possible. When I die, he won't be able to live alone and I can't care for him adequately any more, let alone myself, even with caregivers 5 hours a day. I figure if we move into a nursing facility together, it will ease the transition for him to care by strangers when I'm gone. I've found a place with a nursing unit with big rooms (big enough for some of our furniture, my computer, a bookcase, etc.) where we can share a double and we can both get the nursing care we need. (If we get in.)

This is only one person's opinion, but I say let them be together. The shock of separation will be harder on your mom than the stress of worrying about him at home. At least, she'll be able to see him and be with him, and she's going to worry more about him if he's in a facility, anyway. It's SO HARD with dementia, but being in a strange place while your mom is sick will be extra hard on him, I suspect.

There's never an easy answer to any of this. I may be way wrong, but my sense is there will be more comfort for them together than apart.

God bless.

 

[irismarie]

ANd Beth is wise enough for all of us.
I am so sorry for your situation and admire your strength and love. Your parents are lucky to have you
Love
Irismarie

 

[indigosd]

So sorry for your Parents and for you. I totally agree with our brilliant Bethu. :] Sending you Prairie courage and hugs, Kay Marie

 

[DebbieR]

So sorry that your parents are in this situation and I think that Beth is very wise as well.
All I know is that my mom and dad really wanted to stay together through this disease (ALS) - we didn't have to deal with ALZ - that adds a whole extra dimension. They too had been married for 54 years. Is it possible to move them to the same place for the care they need?

 

[cris]

I'm terribly sorry you had to come looking for us but... very glad you found us! I have to agree w/ Bethu..let them stay together as long as possible. After that many years together it would be harder being apart. I hope that you find the hope and support here that you are looking for. there are some very wonderful people here!

 

[mellorama]

Hello all,

Sorry, I haven't responded to say thank you sooner. Your responses were really great for my sister and I both to read. It made us feel a lot better about the decision to keep them both at home. We journey on....