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Old 04-21-2008, 02:47 PM   #1
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Question How do I know what "stage" he's in?

My dad is eating about 500 cals a day, sleeping 12 or more hours a day, losing weight at an alarming rate...and I am his daughter and his caregiver. I have a husband and young son myself, and we live next door to dad.

The hard part is although I know he has some rather marked dementia (no idea of: day, date, president, who I am half the time, who anyone else is most of the time, can't cook, shop, take care of finances, clean, take care of dog and refuses to shower), he has times when he is lucid enough to actually get a whole sentence out, and he is sometimes aggressive and mean. Other times, he is walking (shuffling - slowly) around the kitchen, and smiling.

But he refuses to eat much at all. His doctor prescribed a low dose of Prozac to mitigate the mood swings, and it should increase his appetite. It hasn't, and doctor knows that I have POA and that his wishes include pallitive care only.

Given that his actual blood pressure and heart health is not great but not horrid, can I expect this situation to get worse rapidly since he is refusing to eat? Is this a sign of the "end"?

Guiltily, I must admit that the "end" would be a blessing for him. He is a shell of who he used to be, and when he has days where he is incapable of even toileting himself, it's so degrading for him for me to take care of him.

What should I expect? Anyone have any idea?

 
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Old 04-21-2008, 03:21 PM   #2
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Re: How do I know what "stage" he's in?

Hi Skimps,
Has your Dad been diagnosed or tested (neurologically)? If you have access to the internet all you have to do is enter 7 stages of dementia and it will pull up the stages with details to determine what stage he is in. It sounds like he is probably well into the disease. My husband (56 yrs young) and is also showing some of the signs your Dad is and he is in stage 6+ of 7 stages. I'm so sorry that you

 
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Old 04-21-2008, 03:36 PM   #3
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Re: How do I know what "stage" he's in?

Skimps,
Sorry... I must have hit a wrong button. Anyway I'm so sorry you are going through this but you are not alone. You had mentioned his Dr had prescribed Prozac and I was wondering if this Dr was his regular MD or a neurologist? You might want to hook up with your local ALZ chapter to get more information as to how you can help him and what other services might be available to you. It sounds like you could use some help with him on a daily basis for showering and maybe some light housekeeping, making him meals etc. I'm also sorry to say that it will get worse and you could use some help determining what might be best for him in the future> Do you have any siblings that might be of assistance? I have lots of sibs but none that live in the same city as me so I'm doing it all on my own. I hope this helps and keep in touch.
Love Janie

 
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Old 04-21-2008, 06:25 PM   #4
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Unhappy Re: How do I know what "stage" he's in?

Thanks, Janie. That was super helpful. I actually have written a letter to dad's MD (he does not have a neuro - it's all I can do to get him to go to the doctor anyway, and the only reason he will go is his beautiful woman doctor is stunning, and he is a man, after all...), and they called me back about an hour ago and are willing to send social services in to evaluate. My first reaction was, "WHOA" - I don't want to see social services swoop in and countermand everything I am doing. Maybe that's wrong thinking, but that's what I have heard they do. I have heard that they will take him away, put him in a home, take all his money and leave me here just holding his dog.

If my perception is wrong, please, someone, tell me. I have only heard the negative. Anyway, dad has a check up scheduled for May 7, and I figured at that time, if he is still with us, the doctor will tell me what needs to be done. I really want to take care of him myself. Of course, it is super-wearing, and I am totally open to having someone stay with him for a few hours, but I don't want anyone prolonging the inevitable for him. If this is "it", then let God do what God does and I am ok with that.

I have just heard so many horror stories about warehoused elderly, tubes, hoses, wires, catheters...I love him too much to see that happen.

To your knowledge, can I prevent that? I do have durable POA. Can I ethically, legally refuse all that stuff for him?

Thanks for y'all's help. I am kind of cast adrift here...

...Deb

 
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Old 04-21-2008, 07:13 PM   #5
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Re: How do I know what "stage" he's in?

Do you have a medical directive or medical POA along with the durable or is medical included in your durable POA. Here they are two different documents. I am not sure what your state laws are there. It might be worth asking a lawyer.

You might also check with hospic. I understand, that at least here, they will provide a few hours a day for those with latter stage of ALZ especially if there is a complicating condition (heart or others). A friend of the family used them for 2 hours a day and that was when Mom was bathed and changed. It also gave the caregiver a little time away. There are also services that can provide help via medicare if so ordered by a doctor. We used one, until Mom fired them, after Dad's hospitalization.

I cannot imagine that social services would show up and take your father away unless there are signs of neglect or abuse. They would much rather the family take care of their loved ones. I would expect it is just a home evaluation to see what is needed. I cannot imagine them trying to use feeding tubes or other measures to delay the inevitable. Most understand a terminal illness and the desire to let nature take it's course. If there is a problem contact hospic for sure!

I am truly sorry you are having do deal with this and your Dad is having to go through this. I am facing this same road with both of my parents and it is not easy. As stated before, know when you have reached your limit and don't hesitate to rethink your decision to keep Dad at home if the road changes. Nursing homes are not the horror story of the past. They are a viable alternative to the sleepless nights, long days, and endless stress.... when the time comes.

I will keep you both in my thoughts and prayers....

Love, deb

 
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Old 04-22-2008, 04:35 AM   #6
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Re: How do I know what "stage" he's in?

Social Services - and Nursing Homes - are full of dedicated, loving people, men and women, who are willing to do this thankless job for way less than most other people with their level of education and competence earn. They are not there to make your life harder, to abuse anybody, to take anyone away, or to torture old people with wires and drugs.

Ok, now that I got that off my chest - let me tell you Mom's experience:

She eventually wound up in a NH about 6 years into Dementia.

I had promised never to send her to one, and my brother had also made that promise, but the circumstances - broken hip, unable to walk, unable to learn from Physcial Therapy to walk again , totally confused, fully incontinent, unable to go up even one step, never mind the stairs to the bedrom/bathroom. So a nursing home had to be found.

Then, the miracle - instead of being 'one of those awful places' it was so nice that the entire time she was there my mother thought she was at a spa, a health resort. Lovely, caring personnel, extreme cleanliness (no smells of wet diaper), etc. They had activites suitable for people in her condition, she made friends. I would say she enjoyed her life there for 2 whole years, until the month or so before she passed away when she was unable to leave her bed.

So don't believe the horror stories. You often hear those from people standing well outside of this kind of situation, who do not have an elderly loved one to care for, and who are super judgmental and convinced of their own moral superiority.

Getting your Dad all the help available should be at the top of your list. Not protecting him from those who are there to love and care for him.

Good luck with finding the best possible care for him, and getting your own life back.

Love,

Martha

Last edited by Martha H; 04-22-2008 at 04:36 AM.

 
Old 04-22-2008, 03:35 PM   #7
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Re: How do I know what "stage" he's in?

Wow, Martha. You just gave me an all new prospective. I guess all I have heard is from the negative side, and I guess it's possible that it CAN be a pleasant experience for our loved ones.

Here's the thing, though. Daddy's birthday is this Sunday. He will be 82. Just half an hour ago, he said to me very clearly, "Wanna make my birthday". Sometimes, he can be so lucid..and other times, no dice. I remind him about 3 times a day that we have an exciting holiday this month - HIS BIRTHDAY and it will be a fun time, and we will go to Chili's for supper, and have presents, and I will make his favorite Molten Lava Cake...

But today, he has spent a grand total of 5 hours out of bed. He has eaten 400 calories. I cannot get him to eat. An Ensure, or rather half of one, and a bowl of Cheerios...and that is it. He is so tired and just wants to sleep. He cannot go on very long at this rate...can he? I understand that this is just part of the process, and obviously, he is ready, and I better GET ready...but (Oh, please, don't let this sound like I think it sounds) can he make his birthday? Other than 911, what can I do here? Can I help him? Should I just let him sleep?

Thanks, all. You guys are my lifeline...
Deb

 
Old 04-22-2008, 05:47 PM   #8
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Re: How do I know what "stage" he's in?

I think he will easily make it to his birthday.

My Mom lost interest in eating, and lost weight, between April 2007 and the day she died in late December 2007. So it took many many months of hardly eating anything before she died (of some infection, possibly pneumonia). It is surprising how far a person can go on very little food. My Mom also slept a lot as those months went by. When she was not asleep in bed, she was dozing in her wheelchair.

Everyone said let her be, if she wants to sleep, it is OK. She lived to be 99.

Enjoy the Birthday Party on Sunday. Sunday (April 27) is alo my youngest grandson's birthday - he will be 6 years old!

Love,

Martha

 
Old 04-22-2008, 06:27 PM   #9
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Re: How do I know what "stage" he's in?

You are answering so many of my questions, Martha and Deb. I can't begin to thank you enough. Here's a new one - and believe me, they just get more icky -

When dad does pass, what do I do? He has a doctor, but no Hospice or anything like that - do I have to call 911? Can I just call the mortuary? Who "declares" him gone? Who does a death certificate? I just know I will be alone with him when he passes, and that is ok with me as he has made it clear in the recent past that he does not want to "go" in a hospital.

But if it's tonight, or (please) 3 weeks from now - what do I do?

Sorry, my new friends. I know this discussion is icky. I am just unknowledgable -

Deb

 
Old 04-22-2008, 06:33 PM   #10
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Re: How do I know what "stage" he's in?

See how self-absorbed I am? Sheesh. Let's try again...

HAPPY BIRTHDAY MARTHA'S GRANDSON!!!!!! HAPPY SIX YEARS OLD!



...deb

 
Old 04-22-2008, 08:08 PM   #11
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Re: How do I know what "stage" he's in?

Skimps-
Please call Hospice. They are a marvelous resource at this time and are completely covered by Medicare. There are several companies providing this service. I did a search online for Hospice in Denver and there is one there.
They are presently helping with my husband at the ALF he is in but I know they do home care also. They will provide you with help and assistance and even respite care. Hospice works as a team. A nurse will visit to assess what needs your father has, they will send aides to assist you, a social worker will be available to answer questions.
I am awed by the services they are providing my husband and what I have seen them provide to friends.
Raffeer

 
Old 04-23-2008, 06:01 AM   #12
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Re: How do I know what "stage" he's in?

Skimps,
I totally agree with Rafeer...call hospice. They take care of everything and I had wonderful experiences for both my parents.

Love Janie

 
Old 04-23-2008, 07:34 AM   #13
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Re: How do I know what "stage" he's in?

Thanks for the b'day wishes for Benny!

If your Dad passes away in your house, you can call the undertaker. It might be wise to find one and make plans ahead of time; then you won't make any silly decisions in a time of grief. We prepaid Mom's funeral about 2 years before she needed it - the reason was that some of her money could be used for that as part of the spending down of her assetts to get into Medicaid.

When she actually passed, we called the Funeral Home (24 hour service), they went to the NH to pick up her remains, and the whole thing ran according to the planned schedule. Mom always said she wanted an old fashioned, traditional funeral with no slide shows or videos. So that's what she got, even the flowers had been prepaid and planned. It was comforting not to go through 'what kind of casket" etc.

The funeral director also made enough copies of her death certificate to satisfy Medicare, Social Security, Banks, and anyone else - they thought of things we never had known about.

You would only call 911 if he needed to be resuscitated, and hospice should already be an intense part of his care in the final 6 months of his life, covered by his Medicare insurance.

Good luck! I hope you both enjoy his birthday and as much time afterwards that you need to adjust to and accept what is happening. You are in my prayers.

Love,

Martha

 
Old 04-23-2008, 09:58 AM   #14
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Re: How do I know what "stage" he's in?

Oh Martha. How I wish you lived in Denver. You are so good and kind...

Ok. Here's a new wrinkle...This morning, I went to check on him, and he was out of bed, AND DRESSED appropriately. Yesterday, I had to help him put his underwear on, and today he is dressed? He ate his 3/4 c cheerios (with encouragement), drank a cup of tea, and wanted to go outside. Martha, he walked! Clear down the driveway and back again (with his cane), slowly, unsurely, but certainly. We came back in the house, and he is worn out, of course. He is cold and the house temp is 76 degrees and he has on long sleeved shirt and a jacket but still cold. I jacked up the heat and he is down for a nap now, but what the heck is THIS all about? He is lucid as all get out, too. His color is not too good - his chin is purplish - but for a full 90 minutes this morning, he was the dad I had 6 months ago.

Should I be encouraged, or is this part of the "rally" I keep hearing about?

And thanks again, Martha. I check my email hourly...waiting to see if you have any more pearls of wisdom that I may benefit from. Speaking of wisdom, when you say to call the undertaker, who declares the person deceased? Do they do that? I am calling the doctor today to see if I can get a Hospice referral....

deb

 
Old 04-23-2008, 10:33 AM   #15
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Re: How do I know what "stage" he's in?

My Mom's death was certified by the staff doctor at the NH she lived in. I don't know who does it otherwise .. maybe a physician has to be called? I never had this experience. My Dad died in a hospital 30 years almost to the day before Mom died ...

Love,

Martha

 
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