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)

Thursday, November 29, 2007

Anger

Well... Unfortunately it seems that we have entered the anger stage. I had sincerely hoped that we had either gone through it this past summer (when she was yelling at her dog... which is something she never would have done & she was less patient with the kids) or we had skipped it all together. But I think I was wrong... actually I still am hoping I was right & that this is just a quick phase or reaction to the busy week last week... time will tell.

These past few days she has spent most of the day pacing the house. From her chair to the window over & over again. She points & shakes her finger saying, "Actually, on fire!" in an angry voice with an angry look on her face. She will pick something up and slam it down saying, "Actually, on fire!"

Brad talked to her last night & she said, "nursing home"... the only thing I can think of is that we talked about it last week at the Dr. appointment. He brought it up in front of her. Brad tried to explain again the situation we are in & how we are trying our best to prevent that for as long as we can. She seemed to settle down after that. But then again today it flared up when our dog threw up in the kitchen...

Cathy gets very frustrated with our dog, Lizzie... she is constantly putting her outside & pointing at her saying, "Actually, on fire!" Yes... Lizzie is still a puppy & she is 90% house trained... she still has lots & lots & lots & lots & lots (I stress lots!) of accidents when she is either nervous, excited, or scared. This makes Cathy very angry... it might be because she has watched me get angry with her over the past few months. I don't ever remember Cathy not liking a dog. In fact, we used to joke that if her grandkids & her granddog were drowning... she may rescue the granddog first (I know it sounds terrible... but she truly is a dog lover!) .... But Lizzie... she does not like. She has never been a huge fan of small dogs, when they had Tiffany (a Shih tzu) she would call her Gayle's Princess. She is more of a lab lover than anything. And unfortunately for Lizzie she is not a lab, she is a Jack Russell. Lizzie will try to sneak into Cathy's room at night & will always get thrown out. At times though she gets lucky & Cathy will let her sit on her lap for a bit... but it usually doesn't last long. I have talked to Brad about finding Lizzie a new home. In fact I called one of the no-kill animal shelters locally and talked to them about our situation this summer when we discussed having Cathy here permanently. Having Cathy & Lizzie living here would not be good for either of them... the guy at the shelter said, "would you get rid of your child?" Of course my answer was , "NO!" So I hung up feeling helpless. (I guess I am not cut out to be a dog lover... that is why I am a nurse & not a vet tech) We have discussed trying to find her a new home, but it will be hard since she is not 100% house trained and everyone we talk to says that may just be the way she will always be... we have tried it all, read every book, & looked online. No luck.

Tonight I thought I would try to cheer Cathy up by taking her to a movie. She Loves movies & 'Enchanted' was playing in Ames. So Cathy, the kiddos, my Mom, my Grandma, & I headed to Ames tonight to see the movie. She Loved the Movie (it was quite cute) & sat very well through the whole thing. However... she coughed through the whole movie. I noticed the people around us kept looking our way. I am guessing they thought she was sick & they were worried they might also get sick. But in fact... she was choking on popcorn because she was eating to fast & then eating more while she choked... I took it away & got her a drink... & then she kept coughing, almost as if it was a nervous habit. I whispered in her ear a few times to cover her mouth & she would stop for a bit & then start again. Uffda. Now that I think about it she has been coughing at home alot... but a public place isn't good, especially when people are thinking about the Flu... urgh again. Maybe we will have to sit in the back of the theatre next time... or we will just stick to rental movies.

When we got home she was irritable... but just like tired kids, evenings are worse than mornings.

This is one of my big worries... I want the kids to remember Grandma being Happy, not angry... Are we making the right decision having Cathy live with us???

Chase can usually make her laugh... he has made it almost a sport. He will say, "Mom, I made Grandma laugh!" or "Mom, Grandma came over and gave me a hug or a kiss!" Tonight after that happened she came out of her room in her pajamas that say, 'my dog walks all over me'. Chase loves to say, "Grandma, does your dog walk all over you?" when she wears that shirt & that always makes her laugh.

I am working tomorrow & Ryan was planning on coming up but he had something come up with his dog business & the weather isn't looking good in Iowa this weekend... so Ryan may be coming for a while depending on the weather. Luckily Brad is home tomorrow since the railroad is moving slow & if he goes to work my Mom is home & she will help out. But I feel bad asking for her help again. We have made so many changes & given up alot to help... & we don't regret it... but we cannot expect everyone else to do the same.

I love this Albert Einstein quote, "Only a life lived for others is a life worthwhile."

If things improve & Cathy stays with us... which I hope they will... I don't think I can continue to volunteer to help at work, it is too stressful trying to figure out who can stay with Cathy. We have looked into adult daycare, but Cathy at this point is unhappy if she is not in a place she is familiar with & the Dr. wasn't sure that was a good idea for a temporary situation. In home care is better & doesn't upset her... but the cost of it is too much.

THANKS again to Rhonda for coming over last night to sit with Cathy. She sat with her while we took our family pictures at Church.

So.... I am probably going to fall asleep praying again tonight.... "Please help this pass quickly..."

HOPE

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