FYI -- update on Mom.

Lucy · Post by **Lucy** » Tue Aug 23, 2005 10:46 pm

Hi friends,

Just letting you know that it's getting harder and harder to keep Mom's BP from dropping now. Had to increase her vasoconstricter alot recently, and it wears off so quickly. Afraid we've about maxed this stuff out, so we're going to see both the neuro and the cardio docs to see what can be done. We may have to go to a drug called flouronef (sp) which has it's risks, but we're trying to maintain quality of life here, soo...

Today, my sis suggested that possibly her autonomic nervous system may just drop precipitously all of a sudden, rather than a more or less gradual or intermittent decline.

Mom has become quite delusional with ideas of reference (thinking that the people on tv are talking to or about her, specifically, and she hears voices pretty badly at times. It's not unusual for Parkinson's patients to have visual hallucinations, but those don't seem to be the problem for her now. Supposedly, when some one her age (she's 84 now) has these psychotic symptoms when they've never had them before, it's almost always vascular.

At least if we have to go the flouronef (sp) route, I'll be able to monitor her anytime since I'm the caregiver. I would suppose that congestive failure is what you have to watch for, and stop this med if you observe symptoms of that.

I would hate to have her put on any neuroleptic, even a mild one, if I thought there was any chance of markedly increasing her PD symptoms, but if the autonomic nerves to the heart are going quickly, I suppose that it might be worth trying to help her alleviate the delusions, etc., so that she won't be frightened about things that don't exist.

In my heart I know that the route her disease has taken is probably the more humane as I've seen people with feeding tubes, broken hips from falls, and needing to have their trach's suctioned frequently with PD. Also, though her voice is weak, we can at least understand her.

Still this is difficult to watch when it's your own mom. Her brother whom I cared for just went to sleep right after lunch was served. Guess Mom will go the same way.

I keep telling myself the end can't be close, particularly since she looks a little better than my uncle did before he died, but somehow, I have to be prepared. I wasn't prepared for when my dad died, so it was a total shock. Guess I'm sort of half way in denial, if that makes any sense. Head part says it could happen, but heart doesn't, I guess.

Anyway, I'll probably be pretty busy from here on out, just in case I don't get to post much or even read much for a while. Will still be thinking of you all, and hoping all are doing well.

Yours, Luce

Mars · Post by **Mars** » Tue Aug 23, 2005 11:02 pm

to you and your mom Luce.

You sound tired. I hope you are remembering to take care of yourself.

Drop in when you can and we'll think about you when you can't.

I'll keep your family in my prayers.

Hugs,
Margie

Post by **tex** » Tue Aug 23, 2005 11:04 pm

Hi Luce,

We certainly all hope for the best possible outcome of the new issue you and your mother are facing. You are a super care-giver, and that makes your mom especially fortunate.

I think, when the end comes, no one is ever truly ready to go, and certainly we are never fully prepared to see our loved ones slip away. We just have to do the best we can, and as you say, maintain quality of life, as much as possible.

Hoping for a safe and easy resolution of the problem,
Wayne

hazel · Post by **hazel** » Wed Aug 24, 2005 5:19 am

Lucy,
I am very glad your Mom has you! PD is such a tough disease. My husband's Mom had it. I hope your Mom can stay comfortable and secure and I hope you continue to keep up your spirits. It sounds like you have a really good understanding of her condition, better than we did.
Many many :bigbighug:

.

moremuscle · Post by **moremuscle** » Wed Aug 24, 2005 6:41 am

Oh, Lucy - I know this is heartbreaking for you; your mother is very fortunate to have you take care of her; you are such a loving and intelligent daughter, hard working too. I know your mother would express her love for you if she could - perhaps she can; I hope so since she probably really wants to. Just the thought that your mother might pass away soon has to be a tough one to deal with. The sadness and grief is already evident in your words - I don't think you are in denial. However, as long as your mother is still with you the daily chores have to be done and you are right on target trying to find ways that comfort your mother and makes her last days, weeks, and months as good as humanly possible.

My best wishes.

Love,
Karen

Polly · Post by **Polly** » Wed Aug 24, 2005 7:15 am

Luce,

Such a difficult time for you and your family.

You are an angel and a wonderful daughter.....I'm sure you know that. Just wanted to let you know that I am thinking of you and sending lots of :bigbighug:

Love,

Polly

Carrie · Post by **Carrie** » Wed Aug 24, 2005 7:17 am

My heart aches for you, Lucy. You and your Mom and your family will be in my thoughts and prayers.

Love,
Carrie

Geri · Post by **Geri** » Wed Aug 24, 2005 11:41 am

Luce,

You are truly a wonderful daughter. You have worked very hard to take care of your uncle, and now your mom, and you can be very proud of yourself. The Bible says to honour your father and mother that your days may be long on the earth...you will certainly live a very long, healthy and happhy life.

We love you, and I will be praying for mom and for your family.

Big hugs,

Geri

Alice · Post by **Alice** » Wed Aug 24, 2005 12:17 pm

Hi Luce,

You're going through a difficult time.... I know. You've been a superb daughter and caregiver, and I hope you have no regrets. The quality- of- life vs. side-effects issues that drugs present are something that I had to accept with my mom and now, my dad. I think with my mom the painkillers did hasten her death. But I couldn't just let her suffer. A certain degree of denial helps us get through these hardest of times, I think. Thinking of you.

Love,
Alice

starfire · Post by **starfire** » Wed Aug 24, 2005 12:30 pm

Luce,

I know you are going through a very hard time and it's probably only going to get worse, but you have cared (physically) for your Mom, loved her with all your heart and done everything you could to give her quality of life. When that quality is degraded to an intolerable degree, then we have no choice but to let our loved ones go as comfortably (for them) as possible.

I have no doubt that you will make the correct decisions regarding her care.

My heart aches for you both.

Love, Shirley

annie oakley · Post by **annie oakley** » Wed Aug 24, 2005 2:28 pm

Prayers and good vibe headed your way. Love Oma

m · Post by m » Wed Aug 24, 2005 5:51 pm

Luce,
You are a very caring and loving person. I'm so sorry you have to go through all this. Be strong.
m

Babci · Post by **Babci** » Wed Aug 24, 2005 8:58 pm

Oh my dear & wonderful twin

I am so sorry you & your family are going through this pain. PD w/delusions id so hard to watch & so scary to feel. Don't know where you get the courage or the strength. How's the back? Just a thought. I have seen wonderful results w/just 25 mg of seroquel (seems to be the best for PD) w/almost no S/E. Have not seen hypotension either. Wrapping you all in love & light, Rita

JJ · Post by JJ » Thu Aug 25, 2005 12:15 am

Hugs are on the way...take care kiddo....JJ

Bobbie · Post by **Bobbie** » Thu Aug 25, 2005 12:32 pm

Hi Luce,
I am very sorry to hear about your very sad cercumstances, it must be a very hard time for you and your family, am thinking of you in my prayers.

God Bless,
Love Bobbie