I just feel like whining
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07-02-2014, 06:23 AM (This post was last modified: 07-02-2014 06:26 AM by War Horse.)
RE: I just feel like whining
Wow, thanks for all the support guys, really appreciated !

As for what else is wrong with her ? Well, 3 years ago she was diagonsed with cirrhoses of the liver, then about 10 month later they found a thoracic aortic aneurysm and put in a stent, a week out of the hospital and she went septic,back into the hospital again, she was in for 2 1/2 weeks close to death getting antibiotics and blood transfusions (this is about the time the dementia would show up from time to time).

They released her from the hospital and I was hanging IV bags of AB, twice a day for 13 weeks, after that she had some bad back pains and she went to the hospital 3 times, 2 times the idiot doctor said she was still drinking and it was due to the liver.

On the third visit a different good doctor took a look and found the stent was leaking.... so they air lifted her to Shands to have the stent redone. By now the dementia was on a rollercoaster ride of good to bad stages.

Fast forward a few months, she had been sleeping 16-20 hours a day for some time now, food intake was sparatic. At the next doctors appointment with a blood test, they found her kidney numbers at 22 and told her that she had about a month left to live. This was 8 month ago, aprox.

Well we took her of all the drugs she had been on and the kidney numbers showed a slight improvement, but only by a few points.
In the meantime the dementia was and is getting worse.

She is aware of whats going on with her, but doing simple things like putting on clothes, remembering where the bathroom is, how to use the microwave, TV remote, phone, etc. , is most times impossible for her.

@ DOM, I did get her into the hospice respite care thing that she can go to once a month for a week. ( couple of weeks ago, her first time there, and I caught a cold and was sick for most of the week, I think my body just shut down)

Placing her in a home is out of the question, as her insurance wont cover it and we dont have that kind of money to pay out of pocket.

For now she seens happy here, at home with the dogs and me, but taking care of doing everything has run me ragged. Of course there isnt much in the way of support here unless it's some religious church/pastor, and then most of it is geared for women caretakers.

Funny, the way I've lived my life and what I've done to myself, I always thought things would have turned out the other way around. Her taking care of me.
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07-02-2014, 07:02 AM
RE: I just feel like whining
(07-02-2014 06:23 AM)War Horse Wrote:  Wow, thanks for all the support guys, really appreciated !

As for what else is wrong with her ? Well, 3 years ago she was diagonsed with cirrhoses of the liver, then about 10 month later they found a thoracic aortic aneurysm and put in a stent, a week out of the hospital and she went septic,back into the hospital again, she was in for 2 1/2 weeks close to death getting antibiotics and blood transfusions (this is about the time the dementia would show up from time to time).

They released her from the hospital and I was hanging IV bags of AB, twice a day for 13 weeks, after that she had some bad back pains and she went to the hospital 3 times, 2 times the idiot doctor said she was still drinking and it was due to the liver.

On the third visit a different good doctor took a look and found the stent was leaking.... so they air lifted her to Shands to have the stent redone. By now the dementia was on a rollercoaster ride of good to bad stages.

Fast forward a few months, she had been sleeping 16-20 hours a day for some time now, food intake was sparatic. At the next doctors appointment with a blood test, they found her kidney numbers at 22 and told her that she had about a month left to live. This was 8 month ago, aprox.

Well we took her of all the drugs she had been on and the kidney numbers showed a slight improvement, but only by a few points.
In the meantime the dementia was and is getting worse.

She is aware of whats going on with her, but doing simple things like putting on clothes, remembering where the bathroom is, how to use the microwave, TV remote, phone, etc. , is most times impossible for her.

@ DOM, I did get her into the hospice respite care thing that she can go to once a month for a week. ( couple of weeks ago, her first time there, and I caught a cold and was sick for most of the week, I think my body just shut down)

Placing her in a home is out of the question, as her insurance wont cover it and we dont have that kind of money to pay out of pocket.

For now she seens happy here, at home with the dogs and me, but taking care of doing everything has run me ragged. Of course there isnt much in the way of support here unless it's some religious church/pastor, and then most of it is geared for women caretakers.

Funny, the way I've lived my life and what I've done to myself, I always thought things would have turned out the other way around. Her taking care of me.

I don't know where you live and what may be available there, but you might search out Alzheimer associations, they often have volunteers who will come in and not only take care of her for a while to give you time off, but also do some of the chores... also, they tend to have get-aways for the patient, where they pick her up for a day and take her to a group where they sing and do stuff that makes them happy... These should be secular... The main things are keeping yourself sane and getting enough sleep. To stay sane, play games or read novels, anything that immerses you in a totally different world and captures all of your attention. You need to get away mentally if you can't do so physically...

Keeping her home is best for her - people with dementia are so much more likely to be abused and neglected in institutions since they can't complain...

It does sound like she will be going soon, and that will open up a whole other mess for you. The intensity of care taking comes to an abrupt stop and leaves a huge void, so there is that, too.

I don't know how often she is totally lucid, but it may be possible to talk with her regarding a "do not resuscitate" and record her saying that she is of sound mind and these are her wishes... the further she slips into dementia, the more she is likely to wish she could have a way out when she is lucid...if at all still possible, you need to have that talk, hard as it may be.

PM me anytime you want to just vent.

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07-02-2014, 07:30 AM
RE: I just feel like whining
I was going to say the same thing that Dom just offered. There are associations which send home-workers to you to help out. Some need to be covered by medicare and some do not. Depends.
Our cousins live right next door and he has some unique strain of MS which has been aggressively shutting his body down bit by bit. She does everything 24/7. (Its one of the reasons we moved here last year to be of help). But she also has visiting nurses, aids and a couple other dementia aid systems which stop in for various reasons. Please check into all local groups near you and take the assistance that's available. If only to have someone come stay with her for a few hours so you can get out and see the world a little bit.
I'm so sorry you're going through this. I see what it's like with our family next door that we help with. Horrible - simply horrible to watch people disintegrate. I'm just so sorry. No one could possibly expect nor plan for something like this. All you can do is just get by, friend.

(((hugs)))

Vent anytime you need to. There are really good people here.Heart

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07-02-2014, 07:32 AM
RE: I just feel like whining
DOM, we both have a DNR, so thats been taken care of.

I did try getting my mind on other things, thats why I got into the RC helicopter hobby. But I found that after awhile it was to taxing on me to focus, and have fun.

It seems that the only time I feel "right" is when I'm riding the motrcycle, my mind is at ease, that is untill the ride home.

I'm in west central Florida, and there are no Alzheimer support groups even close to me.

Dealing with the aftermath wont be a problem for me tho, I've gotten my head around the fact of what will happen, and then will work on selling everything we own,including the house. Will pack up the bike and make a last run at my bucket list of places I want to ride too. After that,, is to far in the future to worry about.

Gotta run and do the grocery shopping now, before she wakes up..... sigh !
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07-02-2014, 07:39 AM
RE: I just feel like whining
(07-02-2014 07:32 AM)War Horse Wrote:  DOM, we both have a DNR, so thats been taken care of.

I did try getting my mind on other things, thats why I got into the RC helicopter hobby. But I found that after awhile it was to taxing on me to focus, and have fun.

It seems that the only time I feel "right" is when I'm riding the motrcycle, my mind is at ease, that is untill the ride home.

I'm in west central Florida, and there are no Alzheimer support groups even close to me.

Dealing with the aftermath wont be a problem for me tho, I've gotten my head around the fact of what will happen, and then will work on selling everything we own,including the house. Will pack up the bike and make a last run at my bucket list of places I want to ride too. After that,, is to far in the future to worry about.

Gotta run and do the grocery shopping now, before she wakes up..... sigh !

Oh yes, the mad dashes to the store while they are sleeping...

Well, you'll cross the bridge of her passing when it happens. In my experience, the reaction is irrational and unpredictable and flies in the face of what one believes about oneself... but a well thought out plan does help.

I still suggest a good novel - it can transport you into an entirely different world and shut out the presence, while you are still basically there and available. Give it a shot. It's a good escape.

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07-02-2014, 09:20 AM
RE: I just feel like whining
I'm back !

Yup, the mad dash , for sure.

I'm about all read out..... been spending most of my time on the puter and about all caught up on youtube and all the atheist stuff, I do enjoy the stand up comedy routines and some old music videos..... but theres only so much out there (that I enjoy).

It feels as though I've just lost interest in everything and dont even seem to care... wierd. I used to have OCD when it came to my hobbies, the house, yard and so on, but now, POOF ! all gone. Seems I fly off the handle at the drop of a hat too, I'll be seeing my doctor about that in a few weeks.... maybe some happy pills are in order.

I'm sure I'll get it back when everything is said and done.... I hope.
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07-02-2014, 09:23 AM
RE: I just feel like whining
(07-02-2014 09:20 AM)War Horse Wrote:  I'm back !

Yup, the mad dash , for sure.

I'm about all read out..... been spending most of my time on the puter and about all caught up on youtube and all the atheist stuff, I do enjoy the stand up comedy routines and some old music videos..... but theres only so much out there (that I enjoy).

It feels as though I've just lost interest in everything and dont even seem to care... wierd. I used to have OCD when it came to my hobbies, the house, yard and so on, but now, POOF ! all gone. Seems I fly off the handle at the drop of a hat too, I'll be seeing my doctor about that in a few weeks.... maybe some happy pills are in order.

I'm sure I'll get it back when everything is said and done.... I hope.



I'd say you're flying off the handle because your nerves are shot. I'm not a doctor - but it sure sounds to me like you're on your last nerve.

Hug

When I want your opinion I'll read your entrails.
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07-02-2014, 09:30 AM
RE: I just feel like whining
(07-02-2014 06:23 AM)War Horse Wrote:  Wow, thanks for all the support guys, really appreciated !

As for what else is wrong with her ? Well, 3 years ago she was diagonsed with cirrhoses of the liver, then about 10 month later they found a thoracic aortic aneurysm and put in a stent, a week out of the hospital and she went septic,back into the hospital again, she was in for 2 1/2 weeks close to death getting antibiotics and blood transfusions (this is about the time the dementia would show up from time to time).

They released her from the hospital and I was hanging IV bags of AB, twice a day for 13 weeks, after that she had some bad back pains and she went to the hospital 3 times, 2 times the idiot doctor said she was still drinking and it was due to the liver.

On the third visit a different good doctor took a look and found the stent was leaking.... so they air lifted her to Shands to have the stent redone. By now the dementia was on a rollercoaster ride of good to bad stages.

Fast forward a few months, she had been sleeping 16-20 hours a day for some time now, food intake was sparatic. At the next doctors appointment with a blood test, they found her kidney numbers at 22 and told her that she had about a month left to live. This was 8 month ago, aprox.

Well we took her of all the drugs she had been on and the kidney numbers showed a slight improvement, but only by a few points.
In the meantime the dementia was and is getting worse.

She is aware of whats going on with her, but doing simple things like putting on clothes, remembering where the bathroom is, how to use the microwave, TV remote, phone, etc. , is most times impossible for her.

@ DOM, I did get her into the hospice respite care thing that she can go to once a month for a week. ( couple of weeks ago, her first time there, and I caught a cold and was sick for most of the week, I think my body just shut down)

Placing her in a home is out of the question, as her insurance wont cover it and we dont have that kind of money to pay out of pocket.

For now she seens happy here, at home with the dogs and me, but taking care of doing everything has run me ragged. Of course there isnt much in the way of support here unless it's some religious church/pastor, and then most of it is geared for women caretakers.

Funny, the way I've lived my life and what I've done to myself, I always thought things would have turned out the other way around. Her taking care of me.

World's a funny place isn't it?
Since a home is out of the question, do you have some family or friends that help? You need your time off as well, I'm sure there's someone that could help you out a little more?

Religion is the frozen thought of man out of which they build temples.
~Jiddu Krishnamurti
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07-02-2014, 09:53 AM
RE: I just feel like whining
(07-02-2014 09:30 AM)Im_Ryan Wrote:  World's a funny place isn't it?
Since a home is out of the question, do you have some family or friends that help? You need your time off as well, I'm sure there's someone that could help you out a little more?

Ryan, I wish there was some help, her family is useless and we really dont have any friends, except for one of mine and thats more of a riding buddy that has a life and problems of his own.

I've become more and more of a lone wolf in the past 4 years, so thats kind of my own fault.
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07-02-2014, 09:56 AM (This post was last modified: 07-02-2014 10:21 AM by WitchSabrina.)
RE: I just feel like whining
[edit]
And get some relief. ((hugs))

People are usually afraid of the cost so doing the appointments to qualify for free home care seems an uphill battle.
Get some help.
You deserve some help.

I'm altering my post due to learning that WarHorse does have *some* help.

Some help better than NO help. MORE help would be even better.

When I want your opinion I'll read your entrails.
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