Belatedly introducing myself...

scotland1October 27, 2005

I just jumped right in a few months ago and started posting, and never introduced myself.

I'm 37, and live in Atlanta with my husband and two DDs (5 and 2.5). DH and I both work full time. Three years ago, my mother lost her seven year battle with colon cancer. A few months before she died, the cancer moved into her brain, leaving her paralyzed (both legs and one arm). She wanted to die at home, so we got hospice service. So I'd diaper my daughter, then my mom, then diaper my daughter again. About this time, I realized that my dad wasn't functioning mentally like he should be. His Alzheimer's diagnosis was official a few weeks after Mother died. Mother's final months were extremely hard on my dad. I was at their house (over an hour away) to help four days a week, and my brother would stop by to visit (but not help) once or twice a week.

When my dad started his Alzheimer's meds, they wrecked his system. He threw up, lost weight, and refused to lower the dosage. He stabilized for a while at a level that he could continue to live by himself with help. My brother and I got him to sign POA and medical POA. He couldn't cook, but was OK to drive to the little local restaurants for meals. Then, he had a decrease in function and wasn't OK to drive anymore but refused to give up the car keys.

This past Christmas Eve, we got some divine intervention. He had a pocket on his colon that burst (I forget the proper name), and had emergency surgery on Christmas Eve. From the hospital, he went to a temporary nursing home, and then onto the assisted living place near my brother that he had selected with us many months before. In May, the colostomy bag was removed, and there was great rejoicing.

Although Daddy's much better now than he was by himself, he won't eat or take his meds unsupervised. Since I'm not home for 10 - 12 hours a day, that rules out him living with us. We do bring him to our house for the weekend once or twice a month (requiring two 3 hour round trips). He is angry and bitter about his loss of independence and his car, and generally refuses to engage with the other residents at his assisted living place. When he's at our house, he's generally more demanding of my time than our two-year-old.

I have it quite easy compared to most of you. He's not having problems with incontinence (the colostomy bag was sheer misery). Most days, he basically understands what's going one but has lost most of his vocabulary. He's always been quite the talker, so this is really hard for him. He can spend hours talking about "the man with the thing" and I never know what story he's trying to convey. Some memories are blending together (he has combined a surgery he had 50 years ago with the one this past Christmas Eve, for example). Even though he hasn't been able to call me by name for a couple of years, he has never forgotten who I am. He loses everything, from clothes to dentures. I'm trying to spend as much time with him as I can while he still knows me, but it's hard between the job, kids, etc. Hopefully, I'll be able to quit working for a while in a few months and spend more time with him. He's only 70, so I should have a few more years with him if all goes well.

So that's me in a nutshell. I'm not truly a caregiver, but I appreciate y'all letting me hang out here.

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Scotland, it helps to get it out, doesn't it! One thing for sure, there is no one here that doesn't know what you are talking about. Dementia wears many different faces. At least, you don't have to worry about his driving now. He'll settle down more and more as time passes. Perhaps if you didn't take him out for several weeks, he might adjust better. Routine is very important. Taking him out of it may be a little more upsetting than you may think.

    Bookmark   October 27, 2005 at 7:50PM
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I completly overlooked your father's age. That's so sad. I can imagine how he felt as he saw his independence slipping away while other men his age were still going strong with few, if any problems. It's hard to say how fast he will go down. Instead of bringing him to your home, is it anyway that you could just go and spend the day with him, maybe take him out to lunch???? It might be easier on him. The long ride might be tiring him out.

    Bookmark   October 27, 2005 at 8:11PM
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I've tried not visiting for three or four weeks, and I go up once or twice a month to take him out for supper. No change in behavior. The ride to my house doesn't tire him out. Physically, he's healthier now than he's been for three years. I get the general impression that he doesn't get agitated at the assisted living facility, only with my brother and I. He's obsessed with regaining his independence. Who can blame him? He's been dealt a bad hand, and he's coping with it far more gracefully than I would.

    Bookmark   October 28, 2005 at 9:12AM
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I've been dealing with Mum's desire to "reclaim" her former independence, too, Scotland! It's been really tough for me.

We went to my favorite aunt's funeral a couple of weeks ago. Mum is the last one of her age group standing. She enjoyed seeing her neices and nephews and people who were part of her circle. The visit to her home, however, brought on all sorts of "issues" I've been dreading. Her complete lack of planning for the dissolution of her estate was very clear to her. (In fact, she was stubbornly unwilling to address ANY of those important issues before her cancer was diagnosed!).

She was all jazzed up to "sell things"; her way of trying to mop up the mess she left for my brother and me. "Those are really quite valuable, you know", "I have someone in mind for that table over there..." (the "someone" wasn't my brother or me and the table in question was the dining room table! and the silverware she was so hot to "sell" was our paternal grandmother's set).

My brother coolly asked her how she was going to go about "selling things"; "I'll have a yard sale". "How are you going to organize it from 70 miles away?" "I'll have to come up here and stay for a few days". Of course she can't do that. She can't cook for herself, remember her pills or take care of her urostomy by herself... she wasn't really capable of really grasping the extent of her inability to be self-sufficient. It was wrenching to watch. But we were brutally honest with her about what was going to happen to things. She was told, unequivocally, that her unwillingness to get it done when she was able meant that WE would take care of it now. She would participate, but she would NOT be "in charge".

My brother and I have spent the past 2 years getting her estate in order; isolating valuable assets and establishing powers of attorney for both legal and medical situations. It hasn't been easy, let me tell you! Painful though it may have been for her, she has to know that she's "off the case"... she dilly-dalleyed too long and neither my brother nor I have the time or inclination to be pulled through a knothole because she was unwilling to "take care of details". PERIOD.

I thought I was going to lose my mind the weekend of the funeral. My brother, more removed from her daily care than I am, offered some excellent ways to "deal with her". It's helped immeasurably and I'm looking forward to another 2-3 weeks "off" while she stays with him.

It's hard. I sympathize, and can offer little more than my own stories... hang in there.

    Bookmark   October 29, 2005 at 9:19AM
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