How do I know what "stage" he's in? - Alzheimer's Disease & Dementia Message Board

skimps46 · 04-21-2008, 03:47 PM

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?

Janie5301 · 04-21-2008, 04:21 PM

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

Janie5301 · 04-21-2008, 04:36 PM

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

skimps46 · 04-21-2008, 07:25 PM

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

Gabriel · 04-21-2008, 08:13 PM

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