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Not Exactly A Happy Topic--


des
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I don't know who here has aging parents.

 

My dad has been deceased about 5 years now, and my mom has had symptoms of Alzheimers. She is in St. Louis and my sister and I have kept her there (she is in Europe), as my mom has many friends in St. Louis. First we had caretakers who stayed with her 24/7, but we decided even that was two much so two years ago we placed her in a center (run by Lutheran Senior Services) which has a really good dementia unit. They have activities every 30 min., very caring, dedicated staff, and a range of functioning levels. She initially actually got better (they have had a few "graduates" of the program). Anyway lately she has deterioted more. This is just a horrible disease. She has a good heart, is otherwise healthy except for arthritis and could live years longer but just keep getting worse mentally.

She has been on drugs to slow the disease, but they don't work forever. She did not tolerate the newer drug for moderate to severe Alzheimers.

 

I am planning to visit in July. Previously I did care for her. It was not really easy, but she did not require supervision every second. There is a woman that lives at the house and she will say that she will help but she doesnt' always follow up on this. I'm not so sure I can do it anymore. Even a visit. Two years ago I tried this and got sick for about two months and I am sure it was stress related. They say that she is incontinent most of the time! YIKES, I have dealt with that a few times. (Pretty surprising but I did teach profoundly disabled children--and adults-- and they were incontinent. Though I did say I didnt' ever want to do that again.) Over Christmas my sister and I took care of her together and that wasn't too bad. But apparently her decline has been recent.

 

Yikes. BTW, anybody out there in St. Louis?

I am surrounded by fundamentalists, which adds to my fun. (not) Unless you count all the Christian Scientists.

 

Gosh this is a downer... sorry.

 

--des

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Des-

 

So sorry. With all the advances in medicine, it seems to be normal now that people are living decades with serious illnessess. This can put great stress on adult children. And regardless of the family, it usually unfairly falls on the adult daughters--the sons often seem to slide out of it somehow.

 

I read somewhere how the cycle nowadays for a woman is that she cares for her children, and then later in life, she cares for her parents, who have reverted in some ways to childhood.

 

I'll pray for the whole situation.

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Des - you're in my prayers too.

 

It often SEEMS like the most loving thing to care for a parent at home, but the reality is she will likely get better socialization, routine, and care at a good nursing home. Perhaps, as she stops recognizing people as much, you could move her closer to you.... just remember that is for you, not her. It sounds like she is well cared for, and fine.... guilt is just part of the equation... it's separate from actually being able to do something better.

 

sometimes there is no good solution - all options are, at heart, unacceptable. ;)

 

Thomas Moore wrote:

 

Pray - period! Don't expect anything. Or better, expect nothing. Prayer cleanses us of expectations and allows holy will, providence, and life itself an entry. What could be more worth the effort -- or the noneffort?

 

 

And, most importantly... remember - God loves her even more than you do. :)

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Des,

 

I'm sorry about the news. I can relate as my grandmother had Alzs for a couple years before she died. She lived with my family my entire life (we had an extended family living arrangement growing up), so I was up close and personal with her illness.

 

I always thought we should have put her in a loving nursing home at the end. It would have been better for her to have nursing care and it would have been better for my parents sanity. As long as the nursing home is very reputable, I don't see a problem with it. I guess the trick is finding a good one.

 

You are in my prayers as well.

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Des,

 

My heart and prayers go out to you and your mom. I lost my dad in 1997; he had been in a nursing home for several years because of Alzheimer's disease. The disease is very difficult on family members as well as the person who has the disease.

 

I found myself unable to visit Dad much when he was in the home. There were a number of factors involved. I had been through a great deal of stress trying to tie up family affairs, take care of him emotionally, and get him proper medical care when he first became ill; my mother was at a complete loss as to what to do, and other family members were not around much to help. I had gone back to college (I was already 30 years old) and I had to give up my formal education because I couldn't handle school on top of the stress of dealing with what was happening to dad at the same time. I was literally spending all day with him trying to keep him smiling, and then crying myself to sleep at night.

 

My mother tried to take care of him at home for as long as she could but when he became wholly incontinent she finally put him in the nursing home. By that time, I was past my own breaking point and it was obvious that Dad had checked out of his body a long time ago. He didn't know anyone, didn't recognize anyone. It was so sad, but he simply was not "there".

 

He had always said that, should something like that happen, he didn't want anyone to see him "that way". Indeed, it was very hard to see him and, toward the end, I didn't go to see him much. I knew his wishes, and knew that he would want me to keep on living my own life. I felt it was better to respect his wishes.

 

I know that it was probably easier on me, perhaps a cop out, but it had seemed more important that I had taken the opportunity to be there for him and to spend quality time while he was in the earlier stages; we spent a lot of time together and we had a lot of laughter and camaraderie at that time, as I felt it was important that he have a good quality of life during that time frame. I wanted him to know how much I loved him while he was still "in there" to experience it, and I did everything within my power to make that transitional time as easy for him as possible. I don't think I could have given any more and lived to tell about it.

 

It took a long time, but finally now when I think of Dad I no longer think about the person with the illness, but about the person Dad was before he became ill. I think this was what he wanted, and I think it would have been a lot harder to get to had I been there with him (or with the shell of what used to be him) daily at the very end.

 

The bottom line is that you do what you need to do. I don't think any other disease demands so much, emotionally, from caregivers or has so much potential for creating little pockets of guilt in us. There is only so much we can give of ourselves before we reach a breaking point and only each one of us knows where that point is. We help no one at all if we're broken.

 

Anyway, you're in my thoughts and prayers, Des.

 

Lolly

Edited by Lolly
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Thanks all! She is already in assisted living. They have a range of services from independent (the have little houses) to skilled nursing and so so far she is in the Dementia

unit (which happily they call something else). She is getting MUCH better care than she could ever get at home. I have read that the health problems of adult (children) care givers is very high. Yes, it doesn't sound as nice, but there is so much more stimulation. No one could manage the every 30 mins activity schedule that they do. They also do an exercise problem that has improved her general fitness. The natilus machines they use are specially geared for aged folks.

 

I don't feel any guilt about putting her where she is, I don't think. It isn't as hard to find a good place any more, though my sister and I worked at it for awhile.

 

I can sure relate to what you say Lolly, I don't like to visit as much for the stress as seeing her in the condition she is in. (Which is part of the stress, but she is very hard to take care of, not just the physical, but she has regressed in other ways and needs a lot of attention.) Sometimes I forget what she is really like.

 

Thanks for your prayers,

 

--des

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Des, Thank you for sharing this part of yourself with us. May God's amazing, transforming, strenthening, and comforting Grace, Peace, and Love be with you and your family during this difficult time.

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My dad died in 1996 and since then I moved in to help my elderly mother she does not have alttimzer....just she is crippled and needs help getting around. Even though she is JW..somehow she is pretty hip for 75. She likes Led Zep and Elton John and she loves to listen to classic rock. I took her to a pow wow a year ago and she loved it and I might take her to the very liberal Summer Soltice paradise in santa Barbara in june. ;)

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She is hard to entertain. She can stand being out for short periods. Her friends are taking her for ice cream vs a meal (or even fast food, just say ice cream though, she loves that), for instance. I got her one season of MASH, so she and I watched that a lot. She can follow the 30 minute story line, besides was a big fan of Alan Alda when it was out.( I love the reruns now.) Conversation is very difficult. She follows a line of conversation on short subjects. But can't follow longer ones. Calling her is difficult now, both due to the place she is in having so many activities and finding a good time (plus the time difference). They eat at some early time (no doubt to avoid endless questions of "when are we going to eat?")

She is quite demanding if you don't come right when she needs you. She was never like that, so I know it is the illness not her. You have to tell yourself this about a hundred times a day.

 

She also has trouble getting around. She has a very fancy walker my sister got for her (she is legal guardian, I guess you'd say). Anyway the staff at the center call it "Elvis" to get her to use it. :-) So they don't come off as nagging. Just one of a million things that they think of. I'm so gratiful we have a very high quality place for her. I remember mom had to make the same decision with her own mom. The place she was in was awful, no stimuli at all.

And it smelled (though my mom's smelling isn't so good anymore).

 

--des

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For what it's worth... This just in:

Over 50% of all people that live past the age of 82 will contract Alzheimer's disease.

--------------------------------------------------------------------------------

 

New Gene Therapy Slows Mental Decline from Alzheimer's

Contributed by Carla Sharetto | 25 April, 2005 19:27 GMT

The human clinical trial was undertaken following extensive studies in primates, which showed that grafting NGF-producing tissue into the brains of aged monkeys restored atrophied brain cells to near-normal size and quantity, and also restored axons, essential for communication between brain cells.

Inserting genetically modified tissue directly into the brains of people suffering from Alzheimer's disease slows their rate of cognitive decline and increases metabolic activity in the brain, suggests a study conducted by researchers at the University of California, San Diego (UCSD) School of Medicine. Their findings are published in the April 24 online issue of the journal Nature Medicine.

PET scans demonstrated an increase in the brain's use of glucose -- an indication of increased brain activity -- while mental-status tests showed the patients' rate of cognitive decline was reduced by 36 to 51 percent.

 

In addition, researchers examined the brain tissue of a study participant who had died and found robust growth of extensions from the dying cholinergic cells near the site of growth factor gene delivery. Cholinergic neuron loss is a cardinal feature of Alzheimer's disease, a progressive brain disorder affecting memory, learning, attention and other cognitive processes.

 

First Neuro Therapy That Prevents Cell Death

 

"If validated in further clinical trials, this would represent a substantially more effective therapy than current treatments for Alzheimer's disease," said Mark Tuszynski, M.D., Ph.D., UCSD professor of neurosciences, neurologist with the VA San Diego Healthcare System, and the study's principal investigator. "This would also represent the first therapy for a human neurological disease that acts by preventing cell death."

 

In this first-ever gene therapy for Alzheimer's disease, UCSD physician-scientists took skin cells from eight patients diagnosed with early Alzheimer's disease. The tissue was modified in the lab to express nerve growth factor (NGF), a naturally occurring protein that prevents cell death and stimulates cell function. In surgeries that took place in 2001 and 2002 at UCSD's John M. and Sally B. Thornton Hospital, the genetically modified tissue was implanted deep within the brains of the eight patients who had volunteered for the study.

 

The human clinical trial was undertaken following extensive studies in primates conducted by Tuszynski and colleagues, which showed that grafting NGF-producing tissue into the brains of aged monkeys restored atrophied brain cells to near-normal size and quantity, and also restored axons connecting the brain cells, essential for communication between cells.

 

The recent human studies were a Phase I clinical trial, designed to test safety and toxicity. The procedure initially was performed while patients were awake but lightly sedated, and two patients moved as the cells were being injected, resulting in bleeding in the brain. One of these patients died five week later. As a result of the bleeds, the protocol was redesigned to perform the procedure under general anesthesia, and all subsequent procedures were performed without complication.

 

Rate of Decline Reduced Up to 51%

 

Cognitive outcomes were assessed in the six patients who completed the NGF delivery procedure safely. The Mini Mental Status Examination (MMSE), which evaluates cognitive function, was administered at screening, the time of treatment, and at several intervals after treatment.

 

Over an average post-treatment follow-up period of 22 months, the rate of decline on the MMSE among NGF-treated patients was reduced by as much as 51 percent. An additional test, called the Alzheimer's Disease Assessment Scale-Cognitive Subcomponent, or ADAS-Cog, also showed improvements in rates of decline.

 

Post-operative PET scans in four subjects showed significant increases in the brain's absorption of a radioisotope called 18-fluorodeoxyglucose, an indicator of increased metabolic activity in the brain. The researchers noted that the increase was observed in most cortical regions that receive cholinergic input from forebrain nerve cells called the nucleus basalis, and in the cerebellum, a structure associated with cortical plasticity.

 

Based on the positive findings of this Phase I trial, a new Phase I/II study using direct NGF gene delivery to the brain, thereby eliminating the need for grafting cells, is currently underway at Rush University Medical Center in Chicago, sponsored by the San Diego biotechnology company Ceregene, Inc. The Chicago trial is under the direction of David Bennett, M.D., director of the Rush University Alzheimer's Disease Center, and Zoe Arvanitakis, M.D., a Rush neurologist.

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I actually emailed my sister about the study. She said that mom is not dxed with Alzheimers that it is actually dementia caused by hardening of the arteries. From the description my sister gave-- she's feeling powerless in her environment (well in some ways a true statement) but sounds a bit like depression.

 

Anyway that email served as a way of starting to talk with my sister about it. I think that's a good thing. "It's a good thing" as Martha Stewart said (not referring to her prison sentence).

:-)

 

 

--des

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My prayers are with you and your family, des. May God grace you with strength and love. And gentleness toward yourself.

 

I have an aunt who has had Alzheimer's for the past ten years or so. My cousin (her daughter) took care of her for a while, but she had a full-time teaching job, so she soon had to place her in an elder day care situation. I know that the stress of caring for her was a struggle. My aunt eventually went in to some kind of home care -- a house with a couple who specialize in Alzheimer's care, and who tend to 3 other patients in their home. It has turned out to be a very good situation for all concerned.

 

And actually my aunt is in a coma presently and these may be her last days. God rest her soul.

 

Peace to you,

curlytop

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