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MsBoots

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Feb 3, 2016
Messages
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Loved one DX
Diagnosis
01/2016
Country
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City
Phla
Hi Everyone,

I'm new here.

My Dad was diagnosed at the end of January, 2016. His progression seems to be rapid and he can't even make it to his first Clinic which would have been tomorrow. He'd have to go flat on his back in an ambulance. He is 83 and just arrived from independent to skilled nursing in his CCRC after a fall and hospital stay. He got a bipap almost immediately after diagnosis but the ALS Clinic nurse and CCRC med director both think a PEG will not do any good at his age and progression, so I am not even going to bring it up with him.

My Mom is in the same building, in the lockdown memory unit (Alzheimer's). While my Sis and I are very grateful for the care and equipment in both units, they are 90 minutes away from us and I can't stand only seeing him once a week. I can't even call him anymore - he can't speak loudly enough. My heart is broken. I used to call him every day while walking home from work. He often said he enjoyed walking me home, including two short weeks ago.

Mom doesn't really care if we are in her presence or not, but it is comforting for me to see her anyway. Her physical health is perfect except for walking (broke a hip, so she's in a wheelchair).

The CCRC is so helpful with everything. I know we are very lucky. We are not rich people. We only got into a CCRC because of long term care insurance.

I just wanted to say that I have been reading posts here since the dx and am finding it all very helpful. I appreciate all of you.
 

Atsugi

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I so, so understand your situation, I think. I lived 3000 miles away from my dad who had dementia, so I moved my family to be closer, and my mom--with a bad heart--didn't help. I cared for both.

As for the phone calls, we found that it made Dad quite happy to hear us speak. So we didn't expect any response from him, we just told stories of the family when we called. A one-sided conversation is difficult, but not impossible.

Did he serve in the military at all?
 
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patrick123

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PALS
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co
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thornton
Even the sound of your voice can mean so much. It's reaching out knowing he has not been forgotten. I have a brother who visits or even make a simple phone call. I have a half brother that I have not seen in almost 50 years. We have reconnected with other .what a special man. And stay in contact. It's strange how life works. Keep talking to your dad even if he is unable to communicate. I'm sure it means a lot to him jousting to hear your voice.
Patrick
 

MsBoots

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Joined
Feb 3, 2016
Messages
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Reason
Loved one DX
Diagnosis
01/2016
Country
US
State
Pennsylvania
City
Phla
OK I will keep calling him, but I will ask him first if it's ok to do that.

He is a vet - I just took a stack of forms to the PVA Friday.

Thank you.
 

Atsugi

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Messages
5,921
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
PVA is your friend. VA is wonderful with ALS. You're heading in the right direction.
 

lgelb

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Messages
12,287
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Lost a loved one
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00/0000
Country
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Does he have a computer or tablet? Pictures and videos from you would mean a lot, too, when you can't be there. Or Skype/Facetime calls so he can see you walking home.

Best,
Laurie
 

MsBoots

New member
Joined
Feb 3, 2016
Messages
4
Reason
Loved one DX
Diagnosis
01/2016
Country
US
State
Pennsylvania
City
Phla
I just ordered a refurbished iPad, so that will be helpful, I think. It would be funny to facetime walking home, right down to my meowing cat that he would always hear as I opened the door. The cat can meow at him while I get my coat off.
 

MsBoots

New member
Joined
Feb 3, 2016
Messages
4
Reason
Loved one DX
Diagnosis
01/2016
Country
US
State
Pennsylvania
City
Phla
I would like to add that my Dad made the selfless decision to move to the CCRC so that my Mom could have the care she needs. She was combative and angry all the time because she thought her mother would be angry because she couldn't get home by sundown. Grandma did have a temper. At age 76, Mom would take off half-running on the winding roads with no sidewalks. My Dad would have to follow her in the car and somehow convince her to get in. That in and of itself was its own ordeal. She is still mad at him, even though I was the one who choose their location, signed all the papers and walked her in, and sneaked off while she wasn't looking. Because Dad went into the CCRC as a healthy independent resident (he was at the time), Mom also counts as a resident and neither of them can be kicked out once we spend down our funds, which will almost certainly happen given their monthly fees. I am incredibly grateful.

My heart goes out to everyone here. I get to see my Dad tomorrow so I am elated.
As they say on one of the Alz forums, we're all in the same boat and the damn thing leaks.
 
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