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Old 11-18-2011, 09:02 AM
 
575 posts, read 853,303 times
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I last saw my Mom this February and she could still hold a conversation, didn't have incontinence and could remember where the bathroom was. All of these things have changed just since February. Her condition seems to worsen every week that I try to talk to her. I get to talk to her maybe once a week because when I call she is either sleeping or having a bad day. So in that week's time it gets dramatically harder for her to remember what she was talking about or make any sense. Why am I telling complete strangers this story? Because most people don't understand what it's like and because I am less likely to fall apart writing about this illness than talking about it.
My father called me last night, so distraught. He was worried about where I would be able to sleep when visiting in three weeks because he was probably going to have the daytime caregiver start staying over so my Mom wouldn't be laying in urine all night. He has to take sleeping pills to sleep due to an annoying noise in his head when he is quiet, trying to sleep so he is unaware of what my Mom is doing in the middle of the night. He still isn't ready to admit her in a facility that would take the proper care of her and lessen the burden on him. He is 91. I told him not to worry about it. There is always the couch or an air mattress. This made him happy. This may sound selfish, but I am so scared to see my Mom in this condition. I spent my youth visiting both my grandparent's in convelescent homes and taken care of by a nurse at home. So helpless. Not seeing her in person, I can still imagine her the way I remember her.
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Old 11-18-2011, 11:29 AM
 
Location: Georgia, USA
21,592 posts, read 26,255,246 times
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Quote:
Originally Posted by bbekity View Post
I last saw my Mom this February and she could still hold a conversation, didn't have incontinence and could remember where the bathroom was. All of these things have changed just since February. Her condition seems to worsen every week that I try to talk to her. I get to talk to her maybe once a week because when I call she is either sleeping or having a bad day. So in that week's time it gets dramatically harder for her to remember what she was talking about or make any sense. Why am I telling complete strangers this story? Because most people don't understand what it's like and because I am less likely to fall apart writing about this illness than talking about it.
My father called me last night, so distraught. He was worried about where I would be able to sleep when visiting in three weeks because he was probably going to have the daytime caregiver start staying over so my Mom wouldn't be laying in urine all night. He has to take sleeping pills to sleep due to an annoying noise in his head when he is quiet, trying to sleep so he is unaware of what my Mom is doing in the middle of the night. He still isn't ready to admit her in a facility that would take the proper care of her and lessen the burden on him. He is 91. I told him not to worry about it. There is always the couch or an air mattress. This made him happy. This may sound selfish, but I am so scared to see my Mom in this condition. I spent my youth visiting both my grandparent's in convelescent homes and taken care of by a nurse at home. So helpless. Not seeing her in person, I can still imagine her the way I remember her.
So, so sorry bbekity.

This is so difficult, and we at C-D are here for you.

But I think that joining a support group for Alzheimer's families in your area would be good for you. You may find it is easier to talk to others who are in the same situation than you think it will be.

It was difficult seeing my Mom when she was in the nursing home. I was able to visit almost daily, though. Her physical impairment was such that care in her home was impossible. She could not move at all, and bedsores would have been inevitable. She had to be repositioned frequently, day and night.

Is there perhaps a facility that your Mom could be admitted to that would allow your Dad to spend most of the day with her? My Dad did that. For a small fee, he could even have lunch in the dining room or my Mom's room. That way, your Dad would not feel he was abandoning your Mom. He could then go home at night and not have to worry about your Mom being taken care of.

It is always hard to discuss this, but do your parents have end of life directives in place? What would they want to be done for them if they had a problem for which it was necessary to use artificial life support? Does your Dad have powers of attorney in place that would allow you to manage his and your Mom's affairs if he becomes unable to do so?

Now would be the time for your Dad to do this if he has not already done so. A consultation with an attorney knowledgeable about elder law would be valuable.

This is really, really hard. Do try to take care of yourself, too, though.
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Old 11-18-2011, 12:37 PM
 
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Thank you Suzi. Thankfully my Mom and Dad made a living will years ago with a medical directive. My sister has a POA as well. I fear that if my Mom goes into a facility or if her health takes a turn for the worst, that my Dad wouldn't last through the year with no reason to go on. How do you deal with that? I wish I knew what it was not to worry 24/7 either about my parent's or my teenage son.
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Old 11-18-2011, 01:37 PM
 
Location: Georgia, USA
21,592 posts, read 26,255,246 times
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Quote:
Originally Posted by bbekity View Post
Thank you Suzi. Thankfully my Mom and Dad made a living will years ago with a medical directive. My sister has a POA as well. I fear that if my Mom goes into a facility or if her health takes a turn for the worst, that my Dad wouldn't last through the year with no reason to go on. How do you deal with that? I wish I knew what it was not to worry 24/7 either about my parent's or my teenage son.
Your fear about your Dad is valid. My father actually died a few months after my mother went into the nursing home, but it was due to something that was destined to happen anyway. But a good facility can help keep the trauma to your Dad at a minimum.

Losing parents is scary. It brings us face to face with our own mortality in a way we've never seen it before.

It's okay to worry. It's what we do. You will still be worrying about your son when he's grown and has his own kids. Trust me on that!

It may be a cliche, but you just do one day at a time. That's all you can do.
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Old 11-18-2011, 02:00 PM
 
575 posts, read 853,303 times
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Quote:
Originally Posted by suzy_q2010 View Post
Your fear about your Dad is valid. My father actually died a few months after my mother went into the nursing home, but it was due to something that was destined to happen anyway. But a good facility can help keep the trauma to your Dad at a minimum.

Losing parents is scary. It brings us face to face with our own mortality in a way we've never seen it before.

It's okay to worry. It's what we do. You will still be worrying about your son when he's grown and has his own kids. Trust me on that!

It may be a cliche, but you just do one day at a time. That's all you can do.
You're right about facing our own mortality. First thing I did after talking to my Dad last night was Google How to prevent Alzheimer's.
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Old 11-18-2011, 03:57 PM
 
Location: St. Louis
9,485 posts, read 16,470,385 times
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Quote:
Originally Posted by bbekity View Post
This may sound selfish, but I am so scared to see my Mom in this condition. I spent my youth visiting both my grandparent's in convelescent homes and taken care of by a nurse at home. So helpless. Not seeing her in person, I can still imagine her the way I remember her.
Selfish? Oh heaven's no. I'd question your sanity if you wanted to see your beloved mother in this condition. I will warn you--my mother has lost a lot of weight just in the last 3 months--she's acting like a teenager with an eating disorder--every time we try to get her to eat she says she doesn't want to gain weight--is almost obsessed by it and she has lost probably 40 lbs and most of it is muscle. Your mother very well could be much smaller also, b/c this is common. And yeah, I have teenage daughters too and trying to balance their needs with my mother's is pretty stressful--I'm gone from home almost every weekend.

And yes, like you I am googling around and trying to figure out how to avoid this fate for myself and I know that's not selfish b/c I don't want to put my kids thru this if I can help it. Exercise and eating right and avoiding meds, OTC or prescription, that may whack out neurotransmitter production is a good start.
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Old 11-18-2011, 04:59 PM
ino
 
Location: Way beyond the black stump.
680 posts, read 2,136,459 times
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It's an impossible situation. Totally beyond anyones control and understanding, and is disgusting how some meet their end with this hideous condition.

The wife had difficulty with her old man as we lost more and more of him as time went by. The thing I told her was that he was perfectly OK, content, happy {he could have gone aggressive which apparently can occur also} smiling all the time {why or at what I hadn't a clue}. He was at peace with everything around him cos he was lost in his own world. I told her to take that as a blessing, after all, he could have gone as her mother did, with Motor Neuron Disease, and that disease is hideous enough.

Far better for the mind to go than the body, at least when the mind is gone there is no suffering {from my observation} mentally of physically.

Prevention? Each must search for the answer to that question themselves, and do what they consider or believe *may* prevent this. That comes down to personal opinion and action regarding many things in todays world.

His nature all his life was quiet and mild in temperament, mine is considerably different, and the thing I found strange the second to last time we saw him was the fact that he never sat down while we visited any other time previous {in the last 3-6 months} but this day he sat down next to me? I remarked to the wife that this was unusual and rather strange as he had NEVER done this before? And the last time we visited before he went, he had a cold/flu and was confined to bed, but he never took his eyes off me the whole time we were there??? I could not help but think that *something???* was going thru his mind, that look was definitely not normal. He passed the very next day. Funnily enough I experienced this the last time I saw my old man, with cancer, I shook his hand before leaving the hospital and HE gave me a similar look, unnerving to say the least. The look as if to say "This is the last time".

I believe everyone needs to talk about the effects that this has on family. I'm only relaying our experience so others understand that many have travelled the same road. Behavioural patterns may differ from one person with Altz to another, but the outcome will always be the same. Be content in the knowledge that there is no suffering, peace and tranquility reigns, and they are floating around in their own little world seemingly oblivious to any worries or cares.

You had them for many years, now it's time to let them go and wander around in their own secret place that we are not privvy too.

Last edited by ino; 11-18-2011 at 05:10 PM..
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Old 11-18-2011, 06:43 PM
 
Location: zone 5
7,330 posts, read 12,603,009 times
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It's a sad, horrible disease. For many, I actually think it's better when it progresses to the point where the person isn't aware of what's going on. The early stages, when someone can still realize they're starting to lose their faculties must be very traumatic. I have known some who seemed content, as ino described. But for others there is anxiety, paranoid delusions, and yes sometimes anger. This must be the hardest state for them.. Medication may help with the negative emotions, or it may not. I know when my aunt was no longer aware enough to experience these feelings, I felt she was much better off. Then, it was harder on us, to see what she had become and to wait for the inevitable.
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Old 11-18-2011, 08:03 PM
 
575 posts, read 853,303 times
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It's like they die, twice. I still can't wrap my head around what has happened to my Mom. It was a year ago this month that my family told me that my Mom heard voices. My poor Dad doesn't know what to do. Keep her at home or take chances with strangers taking care of her. He experienced watching his in-laws, my Mom's parent's, receiving poor care at convelecent homes back in the 70's. I know things have probably changed for the most part since then, but he isn't so sure. I think within the month she will most likely be in a 24 hr. care facility..maybe even by the time I get there. I know my visit will benefit my Dad probably more than my Mom.
Thanks all for sharing your stories. I feel like maybe a dedicated support group on this website might be beneficial. Is this possible?
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Old 11-18-2011, 08:19 PM
ino
 
Location: Way beyond the black stump.
680 posts, read 2,136,459 times
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Quote:
Originally Posted by bbekity View Post
It's like they die, twice. I still can't wrap my head around what has happened to my Mom. It was a year ago this month that my family told me that my Mom heard voices. My poor Dad doesn't know what to do. Keep her at home or take chances with strangers taking care of her. He experienced watching his in-laws, my Mom's parent's, receiving poor care at convelecent homes back in the 70's. I know things have probably changed for the most part since then, but he isn't so sure. I think within the month she will most likely be in a 24 hr. care facility..maybe even by the time I get there. I know my visit will benefit my Dad probably more than my Mom.
Thanks all for sharing your stories. I feel like maybe a dedicated support group on this website might be beneficial. Is this possible?
I don't mean to sound negative cos you don't need any more of that, but there is NOBODY and NO facility or organisation who will care for anyone more than immediate family, as well meaning and intentioned as those organisations and facilities may be, but that choice will be removed - sooner than anyone wishes and is prepared for.

To me it's the final indignity, from being a productive member of the human race and family man, to being removed from my home, relegated to eating whatever muck those homes dish up and call 'food', not sleeping in my own comfortable bed, not being in my life long familiar surroundings, not being able to care for myself etc etc, but at the end of the day I, and my family, will have NIL choice in the matter should anything of this nature befall on me.

The only consolation I will have is that...I won't be in any mental state to pay much attention, and THAT will be a blessing in disguise I guess.

I wish you well, as I'd say everyone else who has spoken here does.
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