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 A day in the life. So sad, so sad.

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onetruebeliever

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PostSubject: A day in the life. So sad, so sad.   Mon Apr 25, 2011 12:52 pm

I am afraid it's getting closer and closer to the day we will have to put my Mom in a home. She has vascular dementia. Most days she functions ok, but she's forgetting more lately - like eating. She has no appetite to speak of, so she doesn't think about it. I sort of get the feeling that she's doing it on purpose as well - to hasten her departure from this world. I'm not sure, but she may have had a mini stroke sometime between Friday and this morning. Or she has just advanced a step.

She had a foot doctor appt. this morning. I got there and she was not completely ready to go. That's unusual for her. She wanted me to file her nails and a couple of other small things. No time!! I handed her her purse as we were heading out the door and down the steps to my car. She still had it when she got to the car. I got her in the car and off we went. Halfway there, I said something about her insurance cards, and she went for her purse. She could not find it. I pulled into a parking lot and looked allover the car - it was not there!

We went back to her home - the purse was no where to be found. I called the office of her complex to see if anyone had turned it in and luckily a maintenance guy found it and took it to the office. Nothing was missing. Mom had $150 in there. I asked her why she had so much and she said, "it;s a new doctor - in case he might ask for some"!! She had no idea she had dropped it. We will try it again next Monday.

She will fight going into a home for sure. I know I cannot have her here - she would set my son off in so many ways and the tension would be horrible. I can't do that again. And I am not equipped to handle advanced dementia. I love her dearly, but she can be very difficult to say the least. It is just so sad - she is not yet 75. That's still young in this day and age. Well, thanks for listening - I had to get it off my chest.
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Ussula



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PostSubject: Re: A day in the life. So sad, so sad.   Tue Apr 26, 2011 11:27 am

Wow, this is always a tough thing, i feel for you and your mom. I wish there was one step easy to do cures for everything that always worked and waving my magic wand would always fix everyone's problems. Unfortunately those things were never meant for this world in that way.

By the way, never fully believe the prognosis of the doctors. You may believe the diagnosis if you wish, doctors are not always wrong lol. But dont believe the prognosis. The reason i say this is because you or anyone else does not have an expiration date stamped on their foreheads. i dont care what trends and statistics are shown up to now for any disease, there are always miracles. Professor Stephen Hawking has ALS. ALs is supposed to kill within just a few short years. It certainly killed my grandma in 3 years. But Mr. Hawkings has survived for over 30 years now. He does this on sheer stubborn will alone. Plus he is smart and realizes that minds certainly does overcome matter. Lets not forget about when AIDS was first discovered to be a slow killing but always fatal disease. They said they could not find a cure or vaccine for it and anyone who got it would always die. But later they discovered plenty of people who had been living with AIDS and not having known it , living with it for years and even decades. There are even some people recently discovered to be immune to it entirely and they also now have a vaccine in the works that is supposed to prevent up to 15 percent of AIDS infection. 15 percent may not sound like a lot but it is more than zero.

My point is never believe someone who says it cant be done it is impossible or that a person will surely pass in a certain way by a certain time. But also remember that while your thoughts, positive or negative, do have real effects in this world, so does the person who actually has the illness.

Do you have any nursing experience? or the insurance or money to afford an in home 24 hour nurse? I am asking because it sounds like that at this stage in her illness, she might have an accident or try to cook and cause fire or something. But If you dont jhave the money, I would have to say that it might be necessary to let her live in a home. That doesnt mean youre abandoning her or trying to be mean to her. Youre looking out for her best interest to give her an easy safe comfprtable ride for the last months of her journey on earth. You can always visit her there as much as you want to. Honestly if she is that far gone she may not even realize she is in a home and it might not be necessary to tell her.

My grandmother on my moms side passed away years ago from a disease little understood called ALS. Towards the end it had given her a kind of dementia as well. She couldnt speak and she couldnt express her thoughts properly anymore, and even when she could still speak she often didnt make any sense. In these situations sometimes it is better to let them believe their delusions if it makes them happy because if you tell them the truth they will be so upset by it but then forget it in 5 minutes and you have to tell them again. Fortunatley my grandma didnt seem to need to be reminded of anything negative in that way, but some people do run into that problem. Such as if she had a spouse that passed before her and she keeps forgetting he has passed and asks where he is...in that case I would personally suggest telling her he went to the store...sometimes a lie can be the most merciful act of all.

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onetruebeliever

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PostSubject: Re: A day in the life. So sad, so sad.   Tue Apr 26, 2011 12:30 pm

Thanks, Ussula. I just had to voice it. The morning made me so sad.

Vascular dementia is like Alzheimer's except that the decline is in a stair step pattern rather than a steep decline. The time line is a little different as well because the decline is based on further mini strokes and tissue death. Mom is probably in the middle stage. She has been experiencing this for 12 years or so. It may be she was just having a bad day. I'm going over in a minute - we will see.

Her last MRi showed many places of tissue death and a couple of small blockages. Her first DX was Alzheimer's, but later amended to vascular. Right now she is able to stay alone with the help of my siblings and I. We have discussed home health care and looked at a couple of homes. She knows it is inevitable that she will go into a home. I have told her when the time comes she may not even know it. That upset her.

She has been very vocal about having someone come in to take care of her. A definite no. But, ultimately it has to be our decision, not hers. None of us is technically or emotionally equipped to handle advanced dementia. She has enough money to last about 4 months in a home, then will convert to state. Home health would eat up her reserves in a couple of months. She was adamantly opposed to going into a home because she thought she would be a prisoner there - never able to go out or leave. She has a better understanding now. We are not afraid to place her, it is just sad to have to do it. She wants to live with me, but I just cannot do it. I have to think of my son's stability. My grandmother lived with her after my Grampa passed, but the difference is, Gramma was well and vital when she moved in.

I go over everyday, sometimes twice and my brother is there in the evenings three or so days a week. The fact that she refuses to exercise a teeny bit is causing her to rapidly physically decline. She can barely walk some days because her back is stiff and sore. It's like beating my head against a brick wall. She lives on sugar, little else. We have dealt with it for years, and will continue to do so, until she becomes a danger to herself.

Thanks for the pat on the back. I wasn't looking for that, I just needed to vent and voice the sadness.
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Ussula



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PostSubject: Re: A day in the life. So sad, so sad.   Tue Apr 26, 2011 10:51 pm

she may not have wanted someone to have to help her or care for her in her home all the time but she must have it if it is needed or go to the home when it is time for her own safety as well as the safety of others. she may have always been this vocal about not wanting it but as she falls deeper into the dementia she is no longer in the state of mind to understand how bad she is getting with it and how dangerous it is. someone else will have to begin making decisions for her. i hope you have a living will for her that includes naming an advocate or whatever they are officially called...you know...the person in the family who will be like her legal guardian and take care of her official buisiness for her.
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Ussula



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PostSubject: Re: A day in the life. So sad, so sad.   Tue Apr 26, 2011 10:53 pm

it is sad our society does not have better health systems in place than this.i wish things were based more on a combination of logic, good accounting, as well as cpompassion and honesty inm medicine.
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onetruebeliever

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PostSubject: Re: A day in the life. So sad, so sad.   Tue Apr 26, 2011 11:44 pm

No living will - it was too late to make one. We consulted an eldercare attorney about all of this last summer. We have even paid for the service they offer of filing the medicaid papers when her money runs out. She even had my brother prepay her funeral expenses. She has the life alert service. We are prepared to place her when it's time. It's not quite yet, but it's getting closer. She's actually better than she was last summer - more here, more cognizant. Her brain had healed a bit from a small stroke she had had.

My brother is her legal power of attorney. Again, it was too late to appoint me medical power of attorney. We have had to utilize his power of attorney when she was admitted to the hospital the last time for a specific test. My brother has the authority to place her without her consent. We will not wait until it's too dangerous for her to stay in her home. Both of us make most of her decisions - she is still capable of making some.
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