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As many of you know, I'm dealing with the denegeration of my father (age 54) right now. He's got ALS (Lou Gehrig's Disease), and is among the .01% of sufferers who experience complete dementia with it.<br><br><br><br>
He's in a home now. I've tried to go once a week, but it usually turns into once/2 weeks, due in part to a busy schedule, but also largely to my own reluctance. He can't talk anymore, and it's very hard to visit him. Sometimes he just wanders out of the room, uninterested, when you're there.<br><br><br><br>
He still recognises me though, which is good.<br><br><br><br>
Anyway. My therapist helping me through this has assured me that I need go only as much as I feel I can, and not to allow my family to make me feel guilty. At once/week I visit him about 4 times more often than I did before he was sick.<br><br><br><br>
But I also have a large family (he is one of 7 siblings) and we are very close, but everyone seems to deal with this through their own perspective- and they project it on me. I.e.: the brother feeling most guilty about not going enough, tries to make me feel guilty... The one who is most traditionally religious (i.e. latent Christian) blames the dementia partly on my fathers new-ageist beliefs... etc.<br><br><br><br>
Anyway. 2 days ago I called my aunt and she was about to call me. My dad's gotten much worse lately. THe beginnings of the lungs shutting down is happening, he's filling up with fluids and having much more trouble swallowing and choking more than he even used to. They wanted me to go in right away in case something happens in the next week and it's 'too late'.<br><br><br><br>
So I did.<br><br>
Trevor went in with me.<br><br>
My dad was glad to see me, I guess. When he took his medicine part way through our visit though he completely choked on it and stopped being able to breathe for more than 2 minutes. He was turning purple right in front of us.<br><br><br><br>
I should mention that choking is one of my biggest fears. I have trouble being around anyone when it happens without completely panicking, which is part of my reluctance to visit him.<br><br><br><br>
There was a good nurse right nearby, and I ran and got her and she helped him through it, but I can see now how close the calls are getting.<br><br><br><br><br><br>
I keep hoping he will just stop breathing in the night, and not go out in a panicked choking fit in the middle of the day, all scared. <img alt="" class="inlineimg" src="/images/smilies/sad.gif" style="border:0px solid;" title=":("><br><br>
Knowing how the disease progresses, it really could be any day now. He has a 'Do Not Ressucitate' order, so if anything happens, they will have to let him go. Honestly, it sounds horrible, but I'd rather it be sooner than later cause it only gets worse from here on out, and he doesn't want to live like this.<br><br><br><br><br><br>
So my question is, has anyone else dealt with this sort of thing in the past? I almost find the family nitpicking worse than the one on one between me and my Dad. Like, I know what I can handle, I know what he can handle (after we visit for a while it gets stressful, as much as he likes having us there, and chokes more, so we take leave of him) but my family tries to pile their own issues onto me without realising it.<br><br><br><br>
I've been doing well so far with guilt levels, etc, but yesterday he tried to leave the place with us, and he's not allowed, so I told him he had to stay and I'd be back to visit soon. He turned away from me as we went and began wailing as he walked away, really unhappy. The two nurses at the station just watched the whole scene with such pity, and as I left I felt my first really serious pang of regret and guilt...<br><br><br><br>
How do you deal with that? Does anyone have any similar experiences?
 

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avalon... i am so sorry about your father <img alt="" class="inlineimg" src="/images/smilies/sad.gif" style="border:0px solid;" title=":("> not only are you having to watch him struggle physically but mentally as well. i can kind of understand what you're going through. my grandfather, although much older than your dad (in his 80s) is going through a similar thing. he has been on kidney dialysis for nearly 10 years now which is amazing because they dont give patients his age that long on dialysis. it is destroying his body. it is so sad to see him so weak and tired and unable to do simple things around the house that once came so easily to him. the worst part is the dementia (sp?). his mother suffered from it due to a hardening of the arteries (lack of oxygen to brain) and now he suffers from it. he forgets things such as where the bathroom is or who people are. it breaks my heart to hear him ask where the bathroom is in my aunt's home that he has been to millions of times (he is a hero to me, the smartest man i know, a veteran of wwii who could tell war stories for hours but cant find the bathroom!). anyway this is the part that kills me and for my own selfish reasons i find it extremely difficult to spend time with him. i end up wanting to cry everytime i leave. the dementia has also made him very paranoid and he wil say things that are so out of his character! for example, lately hes been accusing my grandma of having an affair with the old man across the street. now keep in mind all these people are in their 80s and my grandma cant even walk across the street! so it is funny in a way because it is so ridiculous but then it makes me want to cry <img alt="" class="inlineimg" src="/images/smilies/sad.gif" style="border:0px solid;" title=":("> because it makes no sense.<br><br><br><br>
my mom is the only one who understands i dont want to see him like this. but everyone else in my family makes me feel guilty saying "oh he may not be around much longer" and "this might be our last holiday with him, make sure you stay for awhile." it is only a matter of time before my grandma cannot care for him anymore. you sound like youre doing the very best you can and even seeing a therapist. my advice to you is to continue your visits to the therapist and just do the best *you* can, not what others expect of you. they shoudl realize that this is already painful enough to see your father in this state. im sure they all know how much you love him. and whether you see him or not as often as they like is no measure of your love for him. as long as you know that then thats all that matters. i wish you the best.
 

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Avalon. I started reading your post and almost stopped because I didn't want to read anymore -- my grandma has been diagnosed with a form of dementia. I'm very frightened about it. I'm also worried that my dad may develop it; it seems every little thing that can be construed as a symptom makes me panic.<br><br><br><br>
I'm sorry I don't have any words of wisdom from experience or otherwise...I just pray that a treatment and cure is found. It is, along with all forms of dementia and Alzheimers, one of the cruelest fates.<br><br><br><br>
Do you have friends to talk to in person? I know there are groups that get together to discuss these things, many available to family members of victims within the hospitals. Or maybe a once a week or once/twice a month committment from family members to all meet and feel free to vent at a designated place -- different people hosting each time. Maybe have it potluck style and make it a family night thing -- not just a depressing time! -- with board games like "Trivial Pursuit," etc.; but with the understanding that your frustrations and issues regarding the family dynamic and everything going on with your father's illness can be expressed freely. Honestly, I think this is wonderful for all families.<br><br>
We have done "family night" several times (though we're not as committed to it regularly like we should) and it is a family fun night. It really brings us all together and keeps us in touch with eachother which is so difficult nowadays.<br><br>
Anyway, maybe this suggestion or finding a group to attend or one within the hospital will be a possibility for you or maybe give you some ideas.<br><br><br><br>
Best of luck to you and your family.<br><br><br><br>
Strix
 

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He apparently doesn't like the "home," whatever it is, and would rather be with loving family members, even if it is a relatively good home with clean conditions and capable caring staff and proper medical supervision.<br><br><br><br>
Whether it is possible for him to live in a normal houshold environment, I don't know. Severe dementia may prevent this. There isn't much else I can think of.
 

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I have not done any research about amyotrophic lateral sclerosis. I would suggest doing a little. It is conceivable, as is the case in other diseases (for example Parkisons) that the dementia may have more to do with the treatment than the disease. Parkinson's is famous for this, and famous for the fact that many doctors simply neglected to tell relatives that the dementia that Parkinson's patients experienced was known to be due to the medicine that reduced severe shaking, as was not part of the Parkinson's syndrome itself. Whether or not something similar is happening with als -- I would have no idea. I've researched Parkinsons, a tiny bit, but not als. I just wanted to suggest looking into things a little more, becuase doctors often hide facts from relatives.
 

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Is there a possiblility that he has something else, like alzheimers, or something else, that is happening at the same time as the als? The alsa web site <a href="http://www.alsa.org/" target="_blank">http://www.alsa.org/</a> doesn't even mention dementia, as far as I can see.
 

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It is conceivable that something could be done to reduce the demential, but doctors haven't felt like bothering, thinking that it would be a lot of trouble and he is going to die soon anyway.<br><br><br><br>
I had a problem like this when my mother was dying of cancer, and doctors thought she had only a few months left to live, and at about that time she started developing a hearing loss. When I said "how difficult would it be to get an audiologist into her hospital room, test her hearing, and get her a hearing aid, both doctors and family members said - why go thru the expense and trouble, she is only going to live another couple of months. Idiots. Why -- so we could talk to her and listen to her during those months. Eventually I persuaded folks to cough up money for the basicly rather simple project, and indeed had the good experience of being to converse with her during her last months, instead of having her die isolated from communication with others. It was worth every penny.<br><br><br><br>
I was so pissed by the idiots in my family, I can't tell you. Yes, maybe you don't get a dying person major surgery to fix a bad knee so they can walk without the help of cane and run -- but skip getting hearing tests and a hearing aid? -- morons.
 

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Avalon,<br><br>
I am so sorry to hear about your father. My great-grandmother had dementia before she died and it was the hardest thing ever to not be recognized by her. I was 14 at the time and could only visit her when I had a ride, so I felt that I wasn't visiting enough, but in retrospect it makes it easier for me to remember the grandmother I knew and loved rather than the stranger she became before she died.<br><br>
It's hard. I don't know how anything I could say could help in any way, but I will have you and your father in my thoughts.<br><br><br><br>
Mskedi
 

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Dear Avalon,<br><br><br><br>
I am very sorry for your situation.<br><br><br><br>
Let me try to answer your questions about guilt. I was not in exactly the same situation you are in, so maybe my experiences will not help you that much.<br><br><br><br>
I was involved in trying to give help and support to my parents in their final illnesses. I was the person "on the scene" as my only sister lives 900 miles away and was married with two small children. So there was no basis for any guilt-mongering by my sister, and she did not do anything remotely like that. Nor did I try to guilt-monger her. I am not sure what would lead siblings to try to make their other siblings feel guilty, but I guess it has something to do with feeling guilty oneself but being unable to cope with those feelings, so trying to put them off on someone else instead. Everyone has some childhood and adolescent issues that are unresolved, and maybe your siblings have more than their share of these.<br><br><br><br>
Both of my parents were very intelligent people with sharp minds, so there was no real dementia, confusion or mental impairment involved. In fact, on the day she died, a nurse at the hospital asked my mother about mental confusion and she quickly replied, "My mind is sharp; it's my body that isn't working."<br><br><br><br>
In being with my parents during their final illnesses, I felt I was giving them the last gift of devotion that a son could give. So I felt I was doing the right thing, and there was nothing to feel guilty about.<br><br><br><br>
On the day of my mother's death, I rode with her to the hospital in the ambulance at around 2 pm. She died at about 8:30 pm. I tried to call my Dad, in part to inform him of Mom's death, and in part because I needed a ride from the hospital. Strangely, there was no answer, and I had to wait at the hospital for several hours before my sister was able to track my Dad down by phone. It was about 11 pm by the time he showed up at the hospital.<br><br><br><br>
I later found out that my Dad had been out having dinner with his girlfriend at this time, which is why he was unreachable. In fairness to him, it was not obvious from anything the doctors told us that Mom was on death's door.<br><br><br><br>
I guess the point of this sordid little story is that I felt angry toward my father for his behavior, and maybe this anger helped ward off any feelings of guilt I otherwise would have felt.<br><br><br><br>
Two years later when my Dad became ill, he went into the hospital for a coronary artery bypass graft (CABG, nicknamed "cabbage"). He seemed to pull through the operation ok, and we were led to believe that if there were going to be a problem that it would happen on the operating table or in the first few hours after the operation. So we were lulled into a false sense of security.<br><br><br><br>
I visited my Dad in the hospital and he seemed more or less ok, except that he seemed to have a few bouts of confusion. For example, he asked: "Did we get a room key?" He seems to have thought we were staying in a hotel room while on a trip somewhere, and I had to explain to him that we were in a hospital room, and that there was no key. (It seems, in hindsight, that this might have been an indication that he had suffered a mild stroke on the operating table.)<br><br><br><br>
About four days after the surgery, I got a call from the hospital that Dad had suffered a massive brain stem stroke and was in a coma. He stayed in intensive care on some sort of ventilator/breathing apparatus for about a week while we tried to figure out what to do. After there was no improvement by the 4th day, and after we got an independent second opinion, and after my sister flew in to see my father and talk with the doctors, all the signs pointed to no significant chance for recovery. So it was about as clear cut a case for the termination of life support as there possibly could be. I was his "decision maker" under the durable POA and he had a "living will" as well, so I authorized the termination of his life support.<br><br><br><br>
In a sense, I "killed" my father, since it was upon my say-so that his life support was terminated. I <b>felt</b> horrible about doing this--all the more so because seeing him in a coma meant seeing him in an absolutely helpless condition, and I felt only pity at the time. But I <b>knew</b> that it was my duty to him and to my sister not to let him continue in that condition. So I summoned up the will to do what I had to do and gave the word I had to give.<br><br><br><br>
I am not sure what "moral" you should take away from this story. In one sense, I've been "guilt mongered" all my life (I was raised Roman Catholic) so I've become somewhat immune to it. I tend to see people who attempt to guilt-monger others as being either (a) diabolically manipulative, (b) too weak or irresponsible to face up to their own responsibilities, so try to pass the blame to someone else as a defense mechanism, or (c) just plain crazy. So just "consider the source."<br><br><br><br>
Anyone who has gone through the final illness and death of a loved one will understand how difficult this situation is. So you will not be getting any guilt-mongering from me.<br><br><br><br>
You have my sympathy for what you are going through.
 

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Discussion Starter · #10 ·
I appreciate your thoughts, opinions and stories here, thanks.<br><br><br><br>
Soilman, the website might not mention it because it's very rare. The head Specialist at the neuro hospital here has only ever seen one other patient like my father.<br><br><br><br>
It's a very rare occurance where the neuro lapses in the brain start malfunctioning as much as in the rest of the body. It's centered in his frontal lobe. I think it's 'associated frontal lobe dementia' or something- very very rare in ALS, but it does happen, they say (0.01% or something...)<br><br><br><br>
It's not associated with any treatment for ALS, because he has refused all treatment for the disease, and thus has not recieved any. Under duress prior to Christmas (think: 2 cops a straightjacket and an ambulance) we managed to finally get him under medical care, and taking phsychiatric stabilizers, for the first time in 2 years of sickness. He was in desperate need of this as he was beginning to be a danger to himself and others, and we finally realised we had no choice: he couldn't stay at home any longer.<br><br><br><br>
He still recognises us, but he can't talk anymore, due to the brain problems, not the physical ones. HE can't string words together in a logical order. The other day he tried to write a message to me and he couldn't do it. He just can't organise the thoughts in his head and get them out, though he can hold the pen.<br><br><br><br>
2 years ago he was still flying 747's- and now he can't figure out how to make a tape play with a VCR remote.<br><br><br><br>
He's also very paranoid, and very frustrated. He doesn't like being where he is, but also can't be allowed out right now. He stalks the hallways up and down all day. His dementia makes him very aggressive, also. If he gets frustrated, he acts it out, often with swinging fists- something he NEVER would have done as the man he was before. Sometimes I'll go in and he has a good stubble built up, and the nurses tell me: "We save that for the good days."<br><br><br><br>
He's also skeletally thin now. I think he probably only weighs about 125 lbs, and he's 6'2". He has been refusing to eat... anything but cookies. (So we've been mashing zucchini into the cookies!)<br><br><br><br>
The whole thing really sucks.<br><br>
I don't think my half sister (age 14) has been in to see him more than about twice since last November. She blames him for his sickness, and doesn't care to see him. That pisses me off.<br><br><br><br>
IN some ways I wish it was cancer or something. Or at least the version of ALS my grandfather had. Without the mental degredation he would have had time to deal with and accept his sickness, and I'm sure would have chosen to go under doctors' care. There is no reason that physically he couldn't have lived a much higher quality of life for a number more years. And at the very least we'd have more quality time together.<br><br><br><br>
But the dementia has him reduced to a sliver of the man he was.<br><br><br><br><br><br><br><br>
Trevor is right though when he says that my Dad has at least lived a very full life:<br><br><br><br>
He was a fighter pilot, he was a worlds-level competetive sailor, he's sailed across oceans, he's flown around the world as an airline pilot, he's been to almost every continent, he had lunch with Princess Margaret, he has a Green Letter from the Queen of England, he was a fantastic guitar player and musician, he saw concerts and broadway shows, he met andre the giant! <img alt="" class="inlineimg" src="/images/smilies/smiley.gif" style="border:0px solid;" title=":)"> and Bette Midler, and Wayne Gretzky (his fav!!) and Christopher Reeve, and Rocket Richard, and lots of others. He saw tornados up close, he's seen hurricanes, he's broken the sound barrier, he had 2 daughters, he created a second chance for himself, he had friends, he had humour, he saw into past lives, he followed his dreams...<br><br><br><br>
He has regrets too, I know, but that is only human, I suppose.<br><br><br><br>
Still hard to process though.
 

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Avalon, I'm so very sorry. I have never dealt with anything like this, but I can understand your feelings I think. I have no words of wisdom, and can only offer support. It sounds like he had an excellent life, and was (and still is inside) an excellent person...
 

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Avalon, I don't know what sort of father he was to you, whether he was always there for you, or not, but it seems as though you only have a short time to be there for him.<br><br><br><br>
If he seems to enjoy your visits, then I don't think that you can visit too much. And if you feel guilt now...you may feel a lot more as the years go by, but then you will be completely powerless to do anything for him.<br><br><br><br>
Good luck to you and your father.
 

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Avalon, when you get back from visiting your father, start writing his life story of the vital man who he once was. Research him with family members. Your visits will have a healing phase when you get back home this way. Then when he is gone, you will still have him in bright memory. It helps.
 

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Very interesting Avalon.<br><br><br><br>
I wanted to note that your father is actually younger than I am. I am 55. However I have not had a very full life. I have spent years attempting to do things and not succeeding at them. Some experts have claimed that I suffer from a form of dementia which interferes with my ability to do some things that other people can do, but frankly, I don't see the dementia. Other experts have claimed that I have no dementia.<br><br><br><br>
I am puzzled as to why you want to put <b>zuchhini</b> in your fathers cookies? If his cookies are being made with egg-white (and optionally egg yolks) they will be a good source of protein as well as energy, which all cookies are good source of, esp if they are made with real sweeteners rather than artifiical sweeteners. But the wheat flour is a good source of eneryg. Cookies vary. If they have whole wheat flour they will have some fiber. To increase their protein content without eggs you could add wheat gluten (provided he isn't allergic) or soy flour. You might try 1/2 half whole oat-flour, 1/2 high-gluten wheat flour, about 1/4 tsp of gluten for each cookie, and sweeten with maple syrup, and flavor with a touch of cinnamen, nutmeg (tiny tiny touch), and ginger. The oat flour is whole and has lots of soluble fiber. Add some low-flavor oil, that won't interfere with the oat flavor and maple syrup flavor. like refined olive oil. For leavening use a tiny bit of baking soda and just a few drops of lemon juice. Actually you don't need any water in this recipe. If you add just enough maple syrup to make a thick batter, the cookies are sweet enough.<br><br><br><br>
Zucchini's aren't really the most nutritious vegetable. You say his weight is very low and I agree. They have some trace elements, but I don't really see the point of trying to get them into cookies if he won't eat vegatables. They are <b>not</b> high in calories -- which is what he needs, and protein. Besides, fruit are more important than vegetables. Why not add a bit of homemade applesauce to the above oatflour cookies -- homeade apple sauce -- in a blender add 4 pitted dates chopped or cut into small pieces, 1/2 an peeled apple, and just enough water to process. Blend thoroguhly (for about 3 minutes) then add 1.5 apples and blend only briefly (push down with a carrot to get uniform blending), just a few seconds. Pour out. Mix in sugar to taste -- let stand until the sugar dissolves.<br><br><br><br>
You can add about 2 tsps of this, or bottled cooked apple sauce, to the oatmeal cookies. They improve the texture too and flavor, make them rise higher. You could add chopped pecans too -- to increase the protein and fat content.
 

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Avalon, what beautiful words so eloquently written about your father. He sounds like a wonderful man. I'm happy that he has graced this world, and I sincerly grieve that he is leaving.<br><br>
Very few of us leave this world under dignified conditions, because death is messy, and not very poetic. We only romantize it's meaning with time and space. I guess what I want to say is that it's alright to feel helpless, and out of control, questioning the right thing to do. Trust whatever you choose to do is the right thing.<br><br>
Trust that even in your dads most confused moments there is a part of him that is the quiet, calm, observer. He is busy shedding his physical being right now, but there is a thread of him that has always been, that for will always be.<br><br>
I'll be thinking of you.
 

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Avalon, im very sorry to hear about your dad, having worked with dementia/ challenging behavour residents for over 5years i have seen many many times how hard it is on family... Please dont feel guilty about visiting your dad its ok, it is the hardest thing to see him in this way dementia is one of the cruelest diseases there is. Im a diversional therapist and have always built up a realy good relationship with the families i have looked after and guilt is the one thing that always comes up in conversation, we had residents ranging in age form 40's to 104.... Its much harder for the relatives and friends then it actually is on the resident, as they think at the start that there is nothing wrong with them. Visit when you feel like it, and put aside all the things that your family are saying, think about all the great times you have had with your dad and dont feel guilty.. I know with the residents i have looked after they new they were loved not only by their family but by the staff as well, i can remember many happy times shareing a joke giving cuddles and just being there by there side so rest easy in knowing your dad is well looked after..... i wish you and your family all the best.....
 

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india writes:<br><br>
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Its much harder for the relatives and friends then it actually is on the resident, as they think at the start that there is nothing wrong with them.<br><br>
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The residents think there is nothing wrong with themselves? How does this make things harder for their relatives?
 

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Avalon,<br><br>
My heart goes out to you and your father. I regret that someone as kindhearted as you has to go through this ordeal, and from your description of your father, it does seem terribly unfair that he must suffer this way. It is honorable of you to attempt to care for him as he cared for you as a child.<br><br><br><br>
I've worked in nursing homes, and I consider it a blessing to me to be around people who have hours of stories they want to tell. There are residents who need only smile at me to make my day. There is a distinct difference, in my experience, between the attitudes of residents who have devoted family members and those who don't. They all will die eventually, but some will die happier than others. Go as often as you can and still be able to take care of yourself.<br><br><br><br>
FWIW, I'm praying for you and this situation.
 

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Soilman - As people with dementia progress in their disease they go into their own little world they go back in time forget faces, people, places etc and this is very hard for relatives to cope with.. the person with dementia is quite happy to get on with things on a daily basis eg: getting ready for school, feeding the animals on the farm, needing to find mum and dad etc etc and this is hard on family's. In early stages the person does know whats happening to them they forget what they got up to do, where they have to be, leave stoves on etc this is when its hard on them and family. It is very hard to try and explaine, ive studied dementia for over 3 years while doing my diploma in aged care and it still leaves me very confused at times..... If you are interested in finding out more on dementia try looking up the alzhiemers association they have a lot of information..
 
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