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)

Wednesday, January 28, 2009

Another Downturn...

The last 24 hours have been difficult for Cathy. Something happened last evening... she most likely aspirated something. We are not sure if it is the stomach flu, something she ate, or just phlegm... but she is not doing good. They had to use a wheelchair to get her back to her room after supper (dinner for those of you on the west coast). Whatever it was that happened really scared the nurse. Today I got a call from Brad & Gayle to let us know what was going on & I then called Jean & the NH staff to see what they thought... did the kids & I need to head over? Hospice discussed a few options with Gayle & Toby about medications... antibiotics, etc. Tough decisions for them. Whatever they decide I am behind them 100%. I know they Love Cathy & that they will do what they feel is best for her, I cannot imagine having the weight of that decision on my shoulders.

Talked to Jean again this afternoon. (She braved the risk of getting the stomach flu to see her friend!) She said Cathy kept reaching for her hand to hold & she just stroked it. Cathy also looked at her with eyes seeming to say to her, "Help me." ((((sigh)))) As of this afternoon she had not been able to eat or drink anything & she was beginning to run a fever.

The one constant comfort we have had with this disease is that Cathy has not been in any pain, but now... we are not sure. Watching her eat she looks uncomfortable & she struggles. She has no way of telling us she is in pain. Her vitals are stable. It is hard to say. I hope & pray that after all her suffering that she will not have to endure pain as well.

Later this evening Jackie went to visit. Cath was able to walk down the hall with her to see the birds... but she was not very stable on her feet.

I just talked to the night nurse (I don't normally call & bug them... but I needed some news tonight) & she said Cathy was sleeping. She felt she was doing better & that after Tylenol her fever was gone.

It is hard to say what the next 24 hours will hold... this disease is SO unpredictable!! In the past Cathy will have a bad day & then rebound the next. But each time she seems to come back weaker. And after talking to the people that care for her & are with her every day... the general consensus is that the time is drawing nearer... (I just can't find the right words for this... nor do I want to type the end. It is hard enough to post now with such little good news or something to laugh about.)

So... we are waiting til morning to see if we should head over or not. I have never wanted to predict the future, I am a firm believer in God has a plan & we are to trust in it... but it would be a great comfort to know when we should be there with her, in the end. I know everyone reading this has had this experience. For me it was losing my Grandfather... he was in the Hospital & my Grandmother did not want to leave him, we talked her into going home for a quick shower. I took her while my Mom & my Aunts stayed with Grandpa. As we walked off the elevator on our return to his floor they were standing there crying... he had just passed away. Grandma was devastated, she had been there by his side for months, and was not in the end. Looking back I remember just as we were leaving her house to return a family friend stopped by for a short visit, I truly think that God sent him to delay us, that Grandpa didn't want her there at the time of his passing. Just my thoughts...

2 comments:

Kimberly said...

Thinking and praying for you all during these times!

DeeDee said...

I read about your Grandpa, I truly believe, too that somehow God does things like that (neighbor coming over causing a delay) to help us. (hugs)