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)

Friday, December 1, 2006

The Diagnosis

Location: Wisconsin
Cathy (my Mother-in-Law) was diagnosed with Pick's Disease yesterday.

I am still not able to put a finger on how I am feeling... Anger, Frustration, Fear, Sadness, Hopelessness... She is in her early 50's! This is not supposed to happen. My husband & I both watched our Grandmother's slowly pass away with Alzheimer's Disease... I don't want to go through that again! Brad (my husband) watched his Grandfather pass away from Lou Gehrig's also in his 50's. I don't want our children to go through this. It's not fair! It stinks! It just plain sucks!

How do I comfort my husband? How do I comfort my children? How do I comfort my father-in-law? How do we talk as a family without focusing on this all of the time? My sister-in-law & I have been friends since childhood & talk all of the time... How do we remain positive? I feel guilty not focusing on it... yet it makes you feel so depressed. We need to be positive but the more I read & research about this awful disease the deeper in sadness I get. As I sat at my computer researching Monday night I could feel my heart getting heavier & heavier...

We did have a small ray of light today. Today was her first appointment with the Specialist. Gayle (my father-in-law) picked up today's newspaper in the office & found an article on the Specialist inside.... a positive article about what a great physician he is! What are the chances that today of all days that would be in the paper. The day they are at his office? I truly feel God was giving Gayle & all of us some peace with that sign!! I could hear it in Gayle's voice on the phone today... he seemed hopeful at best... relieved a bit. The Specialist gave her back her driver's license for local use only (Monday her doctor took it away), a mixed blessing. She was so angry when I talked to her last night. Hopefully this will give her some trust in him as her doctor. Now we all need to focus on keeping her active physically, staying positive around her, & keeping her stimulated. The Doc also talked about trying to get her in to a study at Mayo & that would be covered financially so that would be a bonus!

We have so many things to think about... as a nurse (I am an LPN) I keep thinking about medical costs, insurance, disability, her wishes on DNR, living will, power of attorney.... AH! I am not sure how my husband, his brothers, & his Dad will handle all of this. It is up to them, not me. I just pray that they can discuss it before it is too late to know her feelings in the matter. And of course I am thinking down the road... How will we care for her & watch over her? It will cost so much for them to have 24/7 care!! Who plans for that at this age??? Gayle still works full time & it is too early for him to retire. All 3 of the boys live out of state. Brad's older Brother is in the military & unable to move now, his younger brother is expecting another baby, & my husband's job wouldn't transfer to near his parents. We would both Love to move closer and help. (Brad & I have been talking about moving to Wisconsin throughout our marriage) I have taken care of many people with Alzheimer's in the past & know how hard it is going to be. We want to do whatever we can to ease the burden on Gayle. And I want my husband to be able to be close to his Mom now. (even though I know it will be difficult) I want to be there for her like she was for me when our son was a baby. She helped us so much his first year of life! But I am not sure moving is the answer?

I am praying for direction. But truly I guess I am not shocked by this diagnosis at all. I knew something was changing for the worse. When I think back now I can think of so many examples of her not being herself over the past 5 years. But mostly it has been the past 2 years. Brad & I have been talking about it alot. I talked with Gayle about it this summer & after taking a trip with friends to Colorado and noticing all the changes he scheduled a physical. We have talked to his brother's about it also. The kiddos & I have tried to spend alot of time up their the past few years. I took the kids up 4 times this summer... I just knew deep down that something was wrong & she was getting worse. I wanted them to have time with her & memories of her. Memories camping at the lake & hanging out at their house. I just didn't ever imagine it would be this... I thought Alzheimer's... at least that is somewhat treatable now, you can slow the progress with medication. But with this... nothing. zip. zilch. zero.

I have known Cathy now for 15 1/2 years. I am 30... so that makes it half of my life! We have had our ups & downs... just like most mother-in-law relationships I suppose. But I truly Love her like a Mom. She has been there for me countless times. Our styles in life are different. But we always managed to talk it out. I tend to be the type of person that has a hard time not speaking my mind... so she always knew where I stood. And she always gave me advice & told me how she felt too! The funny thing (or sad thing) is that all the things she complained to me about that drove me crazy.... I now miss! I wish she would just call me up & say, "Beth, you need to fix Brad a good meal tonight he has had a hard day at work! (when I worked full time too?!)" or "Beth, your house is a mess, when was the last time you vacuumed?" or "Beth, do you really need to do that?" UFFDA! Crazy isn't it... I even miss how she used to wake us up vacuuming & clanging pans around way to damn early in the morning!! Or how she complained about the unhealthy food I fed the kiddos.... Dammit!!! I miss her! I miss Cathy! And she is still here...

1 comment:

Jean McGrury said...

You will always heve these memories and be able to do the same thing to your daughter in law one day! I know what you nean when you say you miss the things that used to make you so mad. Funny how we can't take those feelings back.... Jean