Our Families Journey Caring for a Mom with FTLD-MND

It is important to know as you read this journal that this was Cathy's life post diagnosis...

To know Cathy Truly you must know that she was: a Wife, Mother of 3 boys, Grandmother of 9, Sister, Niece, Aunt, Daughter, and Friend.

Our families journey began with Cathy's diagnosis the week of Thanksgiving 2006, Cathy was 52. Her original diagnosis was Pick's Disease/FTD. Looking back her symptoms most likely began 3-5 years before diagnosis. Most of the Doctors have told us that from onset of symptoms to death... the average timeframe is 4-7 years. (sigh) In the end her brain autopsy showed Frontotemporal Lobar Degeneration with Motor Neuron Disease FTLD-MND. (Basically... Frontal Lobe Dementia with Lou Gehrig's Disease)

Tuesday, April 29, 2008

Visiting Cath

Well... we moved Brad to Wisconsin over the weekend to his 'summer rental' & the kiddos and I moved in with my parents for now... until school is out. On the way to Brad's new home we stopped to see Cathy briefly. It was hard... it gets harder every time I think. The fact that she can't communicate now is probably what makes it the hardest. She did say "coffee" when we said it, but it was a struggle for her to get the word out.

Cathy sat in her chair (getting up & down rearranging things, opening & closing her door, pushing buttons on her TV... etc), Brad sat next to her in a chair, & I sat on the floor. We just talked to her, telling her what was going on in our lives. She seems to listen & comprehend parts of it. I looked over & Brad had tears in his eyes & was holding it in... it was a hard visit for him. Bittersweet. He was so happy to tell her he was 'officially' moving home to Wisconsin. And yet, she didn't really seem to understand.

On the way back home I stopped in to see her. She had everything packed up as usual... except for her picture board from Rhonda, it was sitting up on a shelf. She would randomly walk over to it & point at a picture and turn and look at me and smile or laugh. I would say who was in the picture and smile. She also kept unplugging the TV & packing it up. (she has been doing this all day long... so far the TV still works... it is hard to watch her plop it down on top of her laundry basket full of things... but she does wrap it in a blanket) As I was there I kept repeating that I couldn't take her out because I had to go home to Iowa. She kept pointing at my keys and zipping up her coat. At one point she firmly grabbed my hand and walked me towards the door. I redirected her again & finally got her to go in to the dining area to eat her lunch. At that point she sat down & starting eating, I blew her a kiss & waved good bye from across the room and she did the same back. I snuck out at that point. I talked to her nurse on the way out & got a big hug from her. They are all taking such good care of her!! She told me about the concerns they are having, that we hear from all the staff: choking- they have done the Heimlich on her a few times, sneaking out- she keeps trying to leave - I don't know if taking her out so much makes it worse or not - but it makes her so happy that I can't imagine stopping - I just feel bad that it gives them extra work, chasing her down the hall each time & redirecting her. It is not NH policy to tell us about each time, only if something occurs that includes a fall or big concern... so who knows how often they have to chase her down the hall???!!!!

It is hard for me to visit her now... I didn't think I would get to that point. I can't imagine how hard this is for Gayle & the boys. I saw the pain in Brad's eyes this weekend. I can usually emotionally detach from the hurt since she is my MIL, not my Mom. But... I can't do that anymore. However... it won't stop me from visiting her. For her, this is not a choice, having this disease. For me, it is a choice, visit her or not. And I choose to visit because she waits for us to visit. (When you visit half of the time you see her peaking through the window on the doors to her unit, looking to see who is coming down the hall) She still knows alot more than we realize - it is weird how the brain works - what works & what doesn't, when & how & why. It seems like she still feels hurt, pain, loneliness... I will not add to that pain. I will comfort/support her in the only way I know how. Visit. Because she would do that for us. She would be there to comfort/support if she could. She is still my children's Grandma & my husband's Mom.

We are so Thankful for all her visitors!!!!!!!!!
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Note from Jean:
Just an update on my last few visits with Cathy..She seems happy and content when ever I
go there lately, Both Friday and
Saturday this past week we've had
fun down in the main dining room,
the music on Friday she enjoyed,
I'm getting her use to country!!!!!
At first she didn't like it, but I think
she knows if it gets her out of her
unit she'll pretend... We had lots
of fun with bingo too on Thursday,
until the lady sitting next to her had
bingo before Cathy and got CANDY !!!!! We had to have a
Bingo real soon after that, Good
that Shelly J. seen what was going
on.... Today I brought a larger
laundry basket for when she packs up her TV... But I need to get a larger one, didn't work so well.. Gayle is afraid that when she
sets the TV on top the other basket it will fall off, and I think he's right,,, Today she also handed me her Bear to be stitched up, so I will run that over to her soon... Very cold today so
I did not take her out....she took my keys and put her coat on, so
I figured she wanted to go for a
ride... I'll take her out tomorrow,
weather permitting.... That's about
all for now,Cathy was up and
dressed at 3:00 A.M. Maybe a nap this afternoon???? Jean
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Once again tonight the kids added this at the end of their prayers, "And please help Grandma to get better."

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