Medical Forum / Diseases and Disorders / Alzheimer's / July 2004
I'm new here and my father has Alzheimers
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Jane Again - 23 Jun 2004 04:06 GMT Hello
My name is Jane and my father is Larry. He'll be 71 years old June 30th. He was diagnosed with Alzheimer's 13 months ago. My father had been pretty forgetful for most of our lives so when he was diagnosed us kids, 21, 38, 41, 43, if you can consider us kids, were shocked. Anyway, dad was put on medication and the first 11 months were pretty uneventful. Dad repeated himself alot, but that wasn't unusual for us. We did notice that he was more aggressive but we liked it, my dad was waaayyy to laid back and was stepped on a lot by people, to see him put his foot down and not take any crap was great.
Well my dad has other health issues along with Alzheimer's, he also is a diabetic, and that has caused other issues, like congestive heart disease (diagnosed in April) He had a double bypass. Since his heart surgery, his Alzheimer's has progressed rapidly. In two months time, dad had gone from still working 40 hours a week to living in a nursing home. He had gotten athletes foot in the hospital (transitional care facility) and because of his diabetes the sores didn't heal and became infected to the point he had to have all the dead tissue surgically removed and was hospitalized again. It was between the two smaller toes on one foot. He had cut his left foot and that isn't healing either. Due to the diabetes his arteries have deteriated horribly in his legs and he has no circulation below his shins. Today we found out the arteries are beyond help, stints can not be placed in his legs to improve the circulation, so he will have to undergo amputation of both legs, just below the knees, as his feet are now turning black, and smell awful. This has been very hard on my step mom of 30 years and my oldest sister, who is really like a mom to the rest of us. My step mother has a genetic heart disease that is incurable and has gone under the knife so many times I can't even count. She now lives with 18 stints in her arteries on her heart, and can not have one more placed. So her next attack will probably be her last. She is 20 years younger then my father. There that should be enough health history to tell you what's going on in our house.
My dad has had some extreme type of hallucinations, I.e. he told my sister he "couldn't put his feet on the floor because of all the blood on the floor from the gang wars." My sister just smiled at him and said, "Dad I think you should not be watching so many violent DVD's." Dad just smiled back. My dad loves Sci-Fi. We bought him a little TV for his room with a built in DVD player, he loves to watch TV. He woke up scared and it took him probably an hour to figure out where he was, and he actually said, "ok I remember now, I'm ok." He also will not sleep in a bed, we had to bring his lazy boy to the nursing home for him to sleep in and made them take the bed out. At times he seems to be resigned to what is happening to him and around him. I feel horribly guilty that he's not living with one of us, but I also understand the 24 hour supervision that is needed, and my whole family works. None of us can afford to quit our jobs to take care of him full time. We take turns nightly visiting him for several hours at the nursing home, but everytime I have to leave to go home I feel horrible leaving him there. He doesn't complain and the nurses and care providers are so sweet to him and flirt with him, and just love him, but I still feel guilty. I live the furthest way, so I see him the least, my step mom and little brother is only about 7 blocks away so she is there daily, my sister lives about 7 miles away so she is there every other night and my brother is about 10 miles away and he is there about 4 times a week, so he has one of us there everyday. That is reassuring to me, but how does one make the guilt stop?
Anyway, I know this becomes progressively worse, my sister and I have tried to prepare ourselves for this, my step mother and brothers are both in denial and refuse to believe that this is happening. They see it happening but it seems to be hitting them so much harder then my sister and I. I just don't understand how two months ago he was relatively normal to so darn sick and falling apart physically and mentally now. Anyway I'll be lurking and reading I just wanted to introduce myself.
Jane A
Dennis P. Harris - 23 Jun 2004 05:59 GMT > I feel horribly guilty that he's not living with one of us, but > I also understand the 24 hour supervision that is needed, and my whole > family works. None of us can afford to quit our jobs to take care of him > full time. We take turns nightly visiting him for several hours at the > nursing home, but everytime I have to leave to go home I feel horrible > leaving him there. DO. NOT. FEEL. GUILTY.
Guilt is NOT allowed here! Seriously, consider that he is being kept safe and as comfortable as he can, and that when you folks spend time with him, it's quality time because you're not stressed out from taking care of him at home. None of you can do what professionals can, 24x7.
Jane Again - 23 Jun 2004 19:39 GMT >> I feel horribly guilty that he's not living with one of us, but >> I also understand the 24 hour supervision that is needed, and my whole [quoted text clipped - 10 lines] >stressed out from taking care of him at home. None of you can do >what professionals can, 24x7. Thank you Dennis and you are right I should not feel guilty and honestly I try not to. I tell myself he has much better care there then he would at home with us. I guess what bothers me is, well it's a little personal, but for five years Dad took care of us as a single parent before getting remarried. His wife, my mom, walked out on us when we were very little and left him with three children to raise on his own. He did one heck of a job as a mother and father. I just wanted to return the favor, it was my goal my whole life to make sure my father never lived in a nursing home, and some how I feel like I failed him in this.
When he was first diagnosed with Alzheimer's, prior to me knowing anything about it, I still planned on having him move in when he was ready. The more I read and the more I talked to people, the more I realized that this wouldn't be possible due to his own safety. So all those promises I made to myself I have to break.
I read in one of the posts earlier, is this for your "person with Alzheimer's" or for your self? I guess this is for me.
Jane A
Dennis P. Harris - 23 Jun 2004 06:06 GMT > Anyway, I know this becomes progressively worse, my sister and I have tried > to prepare ourselves for this, my step mother and brothers are both in > denial and refuse to believe that this is happening. They see it happening > but it seems to be hitting them so much harder then my sister and I. I just > don't understand how two months ago he was relatively normal to so darn sick > and falling apart physically and mentally now. 2 things have accelerated the AD: the physical illness (other than brain damage from the AD) and the anesthesia. Time and time again, familes of AD patients have seen precipitous declines in memory and cognitive function after surgery that involved general anesthesia.
Once he has the amputations, you can expect another decline, and you might want to consider whether it might not be better to simply give him enough painkillers to keep him comfortable and let the circulatory problems and gangrene take their course.
If the surgery prolongs his life, and he's vegetative, what good does that do anyone? What were his wishes in this regard? Did he have a Living Will or other advance directives?
It sound to me like it's time for you to call your local hospice organization, in part because they will help you get ready for the inevitable, and in part to help your relatives deal with their denial.
Jane Again - 23 Jun 2004 19:51 GMT >> Anyway, I know this becomes progressively worse, my sister and I have tried >> to prepare ourselves for this, my step mother and brothers are both in [quoted text clipped - 13 lines] >simply give him enough painkillers to keep him comfortable and >let the circulatory problems and gangrene take their course. I here you, but it is so much easier said then done. As far as pain goes, he doesn't have much, that's how his foot/toes got to be so bad before anyone figured it out. The diabetes has damaged the nerves and vessels to the point of feeling nothing anymore. I may have painted a much worse scene then what is right now, my father only has bouts of Alzheimer's right now, if that makes any sense. I mean he is completely lucid, understands that he will have his legs amputated and is meeting with his doctors today at the doctors office to discuss how much is being removed. He wasn't depressed, yet he seems tired. He's coherent, speaks well, has gained some weight from all the nursing home food, with less activity due to his feet and legs, he's not getting a lot of exercise. He is able to call us on the telephone still, we made him a black book with all our contact numbers. Its as if he's having bouts of dementia then other times he's normal? It's those bouts that shock us, cuz one minute he's completely fine the next he looks lost, or tired, or says something completely off the wall, like, "well everyone went home so I think I'll go back to bed". All the while looking right at me. I can still see him carrying on for another year. I wonder though with the next surgery if he'll progress to stage 3 if there is such a stage.
>If the surgery prolongs his life, and he's vegetative, what good >does that do anyone? What were his wishes in this regard? Did [quoted text clipped - 4 lines] >the inevitable, and in part to help your relatives deal with >their denial. I agree, but my step mom becomes defensive when we try to help or suggest things that may help her. We've (my sister and I) only yesterday decided to step away from giving her advice and concentrate on taking care of my dad. If that makes any sense.
Jane A
Adelle D. Stavis, Esq. - 24 Jun 2004 00:03 GMT > >> Anyway, I know this becomes progressively worse, my sister and I have tried > >> to prepare ourselves for this, my step mother and brothers are both in [quoted text clipped - 34 lines] > for another year. I wonder though with the next surgery if he'll > progress to stage 3 if there is such a stage. You know, this sounds just like my FIL early in his progression. We don't know whether it was multi-infarct/vascular dementia or frontal lobe dementia, but he would be lucid and productive one second and then start talking about the people who come at night and steal things, or how they were going to build a warehouse right next door on their residential street.
Eventually, my FIL forgot he had congestive heart failure and refused to take his meds, landing himself in the hospital. The doctor finally saw what he was really like and refused to release him to anywhere except a Nursing Home. He fell there and broke his hip. Given he was still social, verbal, ambulatory, continent and liked to pace (almost non-stop) we opted to have his hip surgically repaired instead of being stuck in bed the rest of his life. The affect of the anesthesia was huge. He lost most oral motor skills and became incontinent. Within 48 hours of surgery, he aspirated something and wound up with pneumonia. Then he had an MI and a stroke. He never recovered.
Now wait - I didn't write that to scare you. Our decisions were based on quality of life. We are very comfortable with our decisions. He was a man who would have extreme trouble coping with being bedridden. And there was no way to see he would drop so many levels from the anesthesia and never have any chance to gain them back. And ultimately, to go earlier in this disease process is a greater blessing than becoming vegetative and going later.
I think you have Made the best decision for your Dad based on who he is now. No, he will not be this same person 2 or three months from now. But if he is still often lucid, not doing surgery and his trying to cope (while confused) with knowing his own body is poisoning him would be way too much to handle.
Adelle Stavis
Jane Again - 25 Jun 2004 00:24 GMT > I think you have Made the best decision for your Dad based on who he is now. > No, he will not be this same person 2 or three months from now. But if he is > still often lucid, not doing surgery and his trying to cope (while confused) > with knowing his own body is poisoning him would be way too much to handle. > > Adelle Stavis Well the doctors feel he'll be a great candidate for artery transplant. Rather then amputation they are transplanting the arteries from his upper legs into his lower legs, then installing artificial arties in the upper legs. He will loose his toes. He still has strength in his legs to support himself, he has arthritis in his arms and shoulders. This is a reason for this operation rather then amputation, as he doesn't have the strength in his arms to push himself around in a wheel chair. He's made the decision to go forward with the operation.
Now my feelings, I'm thinking by the time they do all this operating and by the time it heals enough to benefit, will he be coherent enough to benefit? The other thing is if this doesn't work correctly, or it doesn't heal correctly due to his diabetes, he'll end up going under again to have them removed. What will is state of mind be should they put him out again, since he seems to disappear a little more each time he is put under. It's not my decision, I am the baby of the family (first marriage) and taken seriously the least, between my sister and my step mom and of course my fathers wishes, they make the ultimate decisions. I've voiced my concerns, and my family feels like I'm passing on hear say and don't want to hear me without some serious documentation to back anything up. If it were my choice, which has clearly been brought to my attention that it is not, I would amputate, rather then taking the risk of having to struggle with the healing and possible amputation later. I'd rather see him not be put under more... Who knows maybe this is the best way to go? Maybe I'd be robbing him of a better quality life? I don't know but either way, regardless of what they decide, I'll be there.
Jane
Adelle D. Stavis, Esq. - 25 Jun 2004 03:47 GMT Check into the Lewy Body stuff, just for your own education and preparation. But don't afraid to mention it to the doctor, either, whether the family supports you or not. This floating back and forth between lucid and not shouldn't be discounted, even if it makes predicting behavior harder.
My FIL was in that back and forth state for three years. And he controlled himself so well that his doctors had no idea there was dementia, despite my MIL's comments about erratic behavior. They thought he was only depressed. He never got any Aricept or Excelon(?) which might have prolonged functionality.
You can't help the medical issues your Dad has. Nor can you control that others are influencing the medical decisions. All you can do is educate yourself and provide whatever info seems relevant. Your role within the family may be that small clear voice from the desert, talking sense. You decide what will make *you* feel like you have done what you think should be done. You have to live with yourself. After you decide, take peace (and heart) that you are being true to yourself. Wishing you luck and all good things!
 Signature Adelle D. Stavis, Esq.
> > I think you have Made the best decision for your Dad based on who he is > now. [quoted text clipped - 12 lines] > legs. He will loose his toes. He still has strength in his legs to support > himself, he has arthritis in his arms and shoulders. This is a reason for
> this operation rather then amputation, as he doesn't have the strength in > his arms to push himself around in a wheel chair. He's made the decision to [quoted text clipped - 19 lines] > > Jane Glenfiddich - 25 Jun 2004 06:05 GMT >Well the doctors feel he'll be a great candidate for artery transplant. >Rather then amputation they are transplanting the arteries from his upper [quoted text clipped - 22 lines] >better quality life? I don't know but either way, regardless of what they >decide, I'll be there. If things turn out badly, don't expect any thanks from those who ignored your warning. Your own inner peace of mind will probably be all the comfort you'll get.
However, the overall decision whether to operate is a very complex issue, where you have to balance future quality (unknown) of life with future risks (unknown) of the operation. Different people can and will see the balance swinging in in different directions, partly based I suspect on what they themselves would want in that situation.
In our case I opted against further surgery - but my wife was in the last few stages of AD by that time, and any meaningful recovery from the bad effects of more anesthesia was not really likely.
Dennis P. Harris - 24 Jun 2004 07:07 GMT > Its as > if he's having bouts of dementia then other times he's normal? It's > those bouts that shock us, cuz one minute he's completely fine the > next he looks lost, or tired, or says something completely off the > wall, like, "well everyone went home so I think I'll go back to bed". > All the while looking right at me. It's very common for them to function adequately when they are healthy and rested, and then have everything fall to pieces because they are tired or have an infection of some kind.
Dennis P. Harris - 24 Jun 2004 07:09 GMT > I agree, but my step mom becomes defensive when we try to help or > suggest things that may help her. We've (my sister and I) only > yesterday decided to step away from giving her advice and concentrate > on taking care of my dad. If that makes any sense. When folks are in denial, there are times when those who are able just need to TAKE CHARGE regardless of what those in denial think. I would call hospice yourself and explain the situation, including your mother's denial, and they will work with you to educate your family.
hal@nospam.com - 23 Jun 2004 21:26 GMT >> Anyway, I know this becomes progressively worse, my sister and I have tried >> to prepare ourselves for this, my step mother and brothers are both in [quoted text clipped - 8 lines] >memory and cognitive function after surgery that involved general >anesthesia. Same here. My mother has a definate family history of AD, and had shown some early symptoms over the years. Less than 3 months ago she had a lung removed because of cancer. Since then her decline has been dramatic. In less than two months she has gone from mild to borderline severe.
Hsl
>Once he has the amputations, you can expect another decline, and >you might want to consider whether it might not be better to [quoted text clipped - 9 lines] >the inevitable, and in part to help your relatives deal with >their denial. Evelyn Ruut - 24 Jun 2004 02:40 GMT > Hello > [quoted text clipped - 64 lines] > > Jane A Hi Jane,
Anesthesia has a very odd effect on alzheimer patients, unfortunately. Over the years that I have been posting here, I have seen so many accounts of unusual, drastic, sudden decline after being anesthetized for even minor surgery.
Please bear this in mind as you make this difficult decision. Best of luck to you and yours.
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
Mary Gordon - 24 Jun 2004 12:33 GMT Jane, not that it matters in the big picture, given the constellation of issues your poor father is facing - but I'm wondering if your dad actually has Lewy Body dementia rather than Alzheimer's. Huge fluctuations are one of the hallmarks. Here is some information http://www.pdsg.org.uk/Booklet/dlb.
If you do a google on Lewy Body dementia you will find more information but one of the hallmarks is "the patient has periods of being alert, coherent, and oriented that alternate with periods of being confused and unresponsive to questions (although awake). This fluctuation is a relatively specific feature of Dementia with Lewy Bodies".
Mary Gordon
Darryl - 24 Jun 2004 13:25 GMT >Jane, not that it matters in the big picture, given the constellation >of issues your poor father is facing - but I'm wondering if your dad [quoted text clipped - 10 lines] > >Mary Gordon /Darryl raising his hand in agreement.
Jane, your Dad *sounds* like he's going through what my Dad did (he was orignally diagnosed with AD but autopsy revealed DLB). Everyone has been thorough on advice, etc., and I'd just like to add that if DLB has not been ruled out, follow Mary's link and read up especially on the use of anti-psychotics in Lewy Body patients. Ask the doctors if they've considered this diagnosis.
Take care, Darryl.
Mary Gordon - 24 Jun 2004 22:58 GMT Accidentally clipped off the end of the link http://www.pdsg.org.uk/Booklet/dlb.htm
Jane Again - 25 Jun 2004 00:14 GMT Thank you very interesting. I'll give it a read.
Jane
> Jane, not that it matters in the big picture, given the constellation > of issues your poor father is facing - but I'm wondering if your dad [quoted text clipped - 10 lines] > > Mary Gordon Char - 09 Jul 2004 04:56 GMT Dear Mary,
Even though I've read alot abourt LBD, I checked out this site. I have to say, it describes John's symptoms perfectly. I printed it out because it does so concisely describe his symptoms. It really just confirms what most of us have thought all along.
Always,
Char
> Thank you very interesting. I'll give it a read. > [quoted text clipped - 14 lines] > > > > Mary Gordon
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