Let me first say that my Mom is doing well, getting stronger. Every other day, she walks on the treadmill for 15 minutes, and has been bugging me to call her doctor to see when she can go back to her water aerobics class! She has always been very fit and active. She is taking steroids to reduce the swelling in her brain from the tumor, and that wreaks havoc with her diabetes and her sleeping patterns. In a few weeks, she will be off the steroids, and at the end of September will have another MRI to find out if the tumor has shrunk and to see if there are any more popping up yet.
I have had a pretty hard time with my Dad. He has really declined in the last few years, but most noticibly in the last four months. He has been staying in a home since my Mom had her treatment. We bring him home for most of the day, about 9 or 10 am until 6 or 7 pm. Here's our conversation the first time I went to pick him up:
Dad: Well there's my little girl!
Me: I might be your youngest girl, but I'm the tallest girl in our family! (That's how I usually answer when he calls me little or youngest)
Dad: Well now, I didn't know that. (Confused and looking at the nurse): I haven't seen her in years and years!
I just kind of laughed it off and didn't contradict him.
Dad: What grade are you in now?
Me: I'm all done with school now. I'm a Spanish teacher (trying to keep it simple).
Dad: Really? A teacher?
Me: Yes, Dad, just like you were.
Dad: Like I was?
Me: You were a professor for 35 years.
Dad: I was?
When we came out to see them in April, my Dad gave me a bunch of Spanish magazines that he had been saving for me. He used to pick them up everywhere he went and save them in the garage. He knew I had started my Master's degree, and kept asking me when I would be done. So now, four months later, he doesn't remember that I'm an adult, that I finished college, started my master's, that I was teaching Spanish, or that even he himself was a professor. It was shocking.
It's strange, though, what functions do remain. He is able to read from the scriptures out loud every evening. He followed along in the hymn book singing quite well. He can do almost everything himself: put on his seat belt, brush his teeth, eat, dress. But you have to tell him every little step. Here is a typical meal:
Dad: Can I eat now?
Mom: Go ahead, but eat your corn first because the chicken is hot.
Dad: (picking up his fork) Do I use this?
Mom: Use your fingers (it was corn on the cob).
Dad: (Taking a bite) There's no stuff on this.
Mom: Put butter and salt on it.
Dad: Butter?
Mom: Here (pointing)
Dad: (Putting his corn down and picking up his fork)I better see what this is (poking at the chicken)
Mom: That's your chicken and it's too hot so don't eat it for a few minutes. Eat your corn.
Dad: My corn?
You see the pattern. Spoken words have little or no meaning for him. He repeats everything because he doesn't know what we're talking about. We have to point to things. But how do you point to "professor" or "sick"? He's actually quite amusing to listen to, but it gets frustrating at times. He often says things like "I wish I had never been born" or "When do I get to die?" or "I will be dead by next week." Which, naturally, is a little depressing.
The nurses in the home and most other people treat him like he is a child. Like a child with bad hearing. It bothers me, it makes me want to tell them all about his past. I want to put a sign on him that says "TREAT ME WITH RESPECT." They don't know that he ran away from an abusive home when he was 16, rode the rails and hitch hiked across the country, enlisted in the army, attended several prestigious universities while working, served an honorable mission in Argentina, taught Kindergarten in California, received his Masters and PhD while a young father, had ten children, was a tenured professor, managed money to raise ten children and then put every single one through college, served another mission with my mom, etc. That's not even the tip of the iceberg.
I take Dad out for a few hours every day so my Mom can rest. On one of our outings, I asked him to tell me how he met Mom. He couldn't remember. Many people with Alzheimer's can remember things from their childhood or past. I asked him a few different questions, even led him down the path a little way to see if he would remember. But he didn't. That was a little sad. He has better moments, but I would say that about 90% of the time he is as I described above.
I keep telling myself that we're doing the best we can for him, and all we can do is help him be happy for the next few years of his life. And if that means driving him by the church 5 times a day to show him that no one is there right now, well then, let's do it. It doesn't bother me. And I'm enjoying my time with him while there are no other demands on my attention (kids). He's pretty fun to be with.
Does anyone have any experience with Alzheimer's or dementia? I would love to hear some stories and/or advice.
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7 comments:
When I came home from my mission my grandmother (my father's mother) was very ill. She had a stroke a few years before which reduced the use of her right arm,etc., and being a very active woman that made her very depressed. I remember before I left on my mission she would go for walks daily down to a little pond. It seemed to make her feel a little better. By the time I returned home from my mission her health had declined rapidly. She was home, but she required constant care which my grandpa was unable to give her. She ended up going into a nursing facility. I remember visiting her and it was just as you described your father. She almost seemed to try to remember though. I remember her getting mad when she would remember things making it out like we were trying to make her look bad. She also, as you described your father, would make quite morbid remarks about wanting to die, etc. It was a bit depressing. We all loved her, but at the same time couldn't stand to see our once vibrant and lively grandmother suffer this way. We knew she was miserable. We knew this wasn't the life she wanted for herself, her husband of over 50 years, or her children/grandchildren. It's hard to sit back and watch someone you love so dearly depart from your presence, but right in front of you. Does that make any sense at all? I feel like I'm babbling now. :) I know that it will never be an easy thing to say good bye to a loved one. But in times like these, sometimes it is the best we could wish for them. Letting them go. I wish I had some words of comfort to offer you. Thinking of my grandmother now brings tears to my eyes, so I can only imagine how you are feeling now. My thoughts and prayers go out to you. I know you and your family will be able to handle what ever is thrown your way. I'm not sure if any of this will help you at all, but know that you are in my prayers. :)
You're a wonderful daughter and just what your Dad needs. Love you!
My grandmother had Alzheimer's and it got pretty bad. She also forgot how to eat and if we left the room and came back, she would say that she had been so lonely and hadn't had anyone visit her for months (it tugged at the heart strings). Near the end, she forgot how to speak, but every once in a while we could get her eyes to light up when we sang Hymns. My mom lived for those moments. It was really hard (especially since my grandfather had passed away earlier due to depression problems) but in the end, lots of prayers helped us to realize how temporary the disease is, and things will get better in the next life. We'll keep you in our prayers and hope for the best.
What a touching post and lovely comments. I have nothing useful to add, but that I know you'll be strong enough whatever comes.
I really enjoyed reading your post and learning about what an incredible life your dad has had. Alzheimers is very sad. I don't really have advice. I'm sure just you being there and being supportive is helpful, even if he doesn't internalize everything.
I have no real advice. Things were much the same with my grandma before she passed away (she died right after you started working for me). It was hard to watch, but it sounds like you are making the most of the time you have left and that's the most imporant thing I can advise. Hang in there. Love you!
Wanna,
You know that PBS program you suggested we watch to learn more about Dad? The thing that really struck me was the comment that our society highly values words, and thinking, and quick action. But just because someone with Alzheimer's doesn't have the ability to be strong in these areas anymore doesn't mean they can't have quality of life. What things do you think we could do for Dad that would help him to find value in activities other than talking, verbalizing, processing, etc.? For example, something creative....
My grandmother who had Alzheimer's (and who was also legally blind) started painting at around age 88. She attended a class offered to Seniors. She used watercolors and gave them as gifts. She found joy in it and I'd love to have one of those paintings. There may even be something right there in Sun River that he could learn. Just an idea.
Another thought... you know those recordings you have of your Dad's memories? He may enjoy reading some of the transcripts. Even if he doesn't fully remember or even associate himself with what he reads, he's lived a very interesting life and it would be a captivating read!
I put together a book for my grandfather, who is almost 94, for his birthday last year (it was meant to be for his 90th birthday, but it took me a while to get to it). It was "This is your life." I scanned bunches of pictures of him, from pics of his parents, to him, to his wedding, to his children, their house in Ireland, their first car, the time he met Spencer W. Kimball, his mission with my grandmother. I put it all online and made a book on Snapfish and he treasures it. I loved doing it, too.
Just some ideas for you.
Love you lots.
P.S. Your blog is great!
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