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)

Monday, October 29, 2007

Doctor & Moving to Iowa


Today was her 4 month check up (truly it was supposed to be her 6 month check up, but she was progressing so fast that in June he said to come sooner). This morning just started off bad. She knew today was her appointment and she was not happy. She says she likes Dr. Loepfe but she DOES NOT like the testing. It isn't that it is painful... it is hard for her, frustrating... drawing time on a clock, drawing a box, connecting dots, etc. She knows that she should know how, but she just can't do it right. Rhonda emailed me this morning and told me to tell Cathy, "just do your best." So I did... that seemed to ease her for a little bit.

Complication~
We noticed all morning she hadn't packed her things up to go home with us. The plan was to head back to Iowa after her appointment in LaCrosse. Brad finally asked her, "Mom, what do you want to bring with you back to Iowa?" And she said, "not going." Brad came into the kitchen where I was... he didn't know what to do, he didn't want to be the bad guy... but somehow we had to tell her she was coming home with us and why. It has been troubling both of us for the past few months. I felt like she needed to hear it from her boys or Gayle... not me. So, he did it...

Brad: "Mom, do you understand why you need to come home with us?"
Cathy: she just kept looking at the tv, holding the remote, and repeated what he said
Brad: "Because the Dr. doesn't want you alone anymore because of your illness, if something happened you would be all alone."
Cathy: flipping channels on the tv, no response
Brad: "We want what is best for you Mom, that is why Beth quit her job, so we could take care of you, help you. It has put a financial burden on us, but we want to help you Mom. It is hard for us all. We wish we could take care of you up here... but we can't"
Cathy: she clicked the tv off & on again.
Brad; "Mom, if you don't come home with us you have to go to Pineview or someplace that can take care of you when Dad is gone. When he is home you can be home, but when he is working you cannot be alone."
Cathy: She shook her head no and repeated "pineview"
-by this point Brad had tears in his eyes, but she just kept the same blank look on her face. She looked at both of us with no expression, got up out of her chair, grabbed her suitcase and brought it to the front door. Brad got up and gave her a hug. And that was it... she didn't say anything, but I think she understood.

Dr. Appointment~
We met with the social worker for a few minutes. Nothing new. They don't have much to offer... he asked if we 'understood what we were getting into', he asked if we had discussed what we will do when we can no longer take care of her at home, he mentioned putting her name on waiting lists at those places for when it is time. Then the nurse came and got us because she said Cathy was 'ancy' in the room she was in.

Basically Cathy refused to do her testing today. And since it had only been 4 months the nurse didn't push her. Dr. Loepfe said when the nurse went in the room Cathy was talking to the wall... we told him she usually talks to herself by repeating words... but we have never seen her talking to someone. (I think the nurse just wasn't used to her situation).

The appointment today went the same as in June. He asked her a few questions & she answered him just like last time. He asked "what do you do all day?" She answered, "wash the bed" and looked over at us almost asking us to help her. He asked her about what she eats, if she has fallen, if she is depressed, etc... She smiled and answered all his questions. Then he asked us similar questions. We told him how things were going now. Discussed the changes. (It is hard to talk about her in front of her...) Talked about her sleeping habits, eating habits (she has lost quite a bit of weight since her last visit, most likely because she can no longer drive herself to town and buy ice cream & candy bars plus she is drinking milk all day instead of a 12 pack of pop a day), and a few other things. It was emotional again today... In the end he prescribed her 2 new medications. One to "test" and see if it helps with her memory, most likely not, but it is worth a shot. And another to help her sleep more soundly. We made a follow up appointment in one month to see how her medications are going and to repeat the testing. When he mentioned repeat the testing she lost her smile... he tried joking with her about not studying for it... she didn't laugh.

He also, like the social worker, asked us "do you know what you are getting into?" Yes, we know. But how could we not take care of her? How could we send her to a nursing home at 53? How could Gayle afford to hire 24 hour care for when he is gone? It just seems like a no brain-er for us. Family is Family... period. We will do all we can for as long as we can. She would do the same for us.

On the drive home today we stopped at a rest area along the Mississippi. Cathy & I looked out over the water, the leaves are changing color - most of them have already fallen, it was a Beautiful Day, & I snapped her picture (see above). The ride home went fairly well, she sang along to REO speedwagon with me, worried about the semis blowing a tire, asked to stop at quik trip a few times (wanting a candy bar each time), and laughed at Brad when he would do something to try to make her laugh. One time he looked back at her and said, "Mom, I wasn't any trouble growing up was I?" And she laughed and said, "run away... run away to Wisconsin with Dave". She was right... he did run away in high school... she remembers the past so well! :)

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