Hello:

My name is Anna and I am the primary care giver for my 73-year-old mother. We live together, just the two of us. My mother was diagnosed in late 2006 with Parkinson’s and then shortly after with Global Dementia. She had been working up until her diagnosis but retired shortly there after. Actually, I had to retire her because right after her diagnosis she slipped into a severe psychosis. For about a month, she didn’t know who I was. I don’t know how I kept her at home, but I did and she started to improve and came out of the psychosis.

It has been up and down ever since. Just recently, her medication was adjusted to improve her PD and again she went psychotic. This time, it cleared in a few days. All this happened when she was receiving home health care through Medicare, but that ended today. So now, we are on our own and I am starting to look into an Adult Day Care Program. For some time, I had it in my head that my mother would somehow miraculously get better. Really, I thought that this was some kind of mental illness that she could overcome and I don’t know why I would think such a thing but that’s what I did. Now, I accept that she isn’t going to get any better. In fact, it’s going to get much worse.

I have never been an outgoing type of person and frankly was very happy working, gardening and just being at home. Isolated yes, but very comfortable and certainly had no drama in my life. Now, all that has changed and I certainly regret not having pool of friends and family to share this burden. I do have a therapist though but she keeps telling me to get out and do stuff and meet people. Now, tell me, how I am suppose to do that when it is not in my nature to do so and doing anything for myself seems to cause guilty feelings because my mother has this terrible condition. I’m at a loss.

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Originally posted by SnowyLynne:
Welcome Anna.I have Vascular dementia after living with a diagnoses of Alheimer's for 10 yrs.........

I have been reading about Vascular Dementia and I think (not being a DR) that my mom may too have this type since her decline seemed to follow a series of small strokes and the onset of PD. All of this is just so complex and I do worry about misdiagnoses.

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Originally posted by BlueWaterBeach:
Anna, I have missed your initial post. Welcome!

I also have been one to sink myself into gardening, and family. Friends that we used to have contact with are busy doing their own things. Many times during the past year, it would have been so nice if there had been someone who wouldn't have minded taking the time to spend a little time with us, some support. I hope that in the future, I can be a good freind for someone in need.

I have not heard of Global Dementia either, and will be reading up on it.

Please, Please come back, we will always be here for you!

I didn't go anywhere... just been busy with mom. She's doing great but it is a bit of a roller coaster.

Welcome Anna.I have Vascular dementia after living with a diagnoses of Alheimer's for 10 yrs.........

Anna, I have missed your initial post. Welcome!

I also have been one to sink myself into gardening, and family. Friends that we used to have contact with are busy doing their own things. Many times during the past year, it would have been so nice if there had been someone who wouldn't have minded taking the time to spend a little time with us, some support. I hope that in the future, I can be a good freind for someone in need.

I have not heard of Global Dementia either, and will be reading up on it.

Please, Please come back, we will always be here for you!

Thanks Mariabee:

My mother is taking Fluephanzine (Also called Prolixin) It's the same drug she has been taking since the 1980(s). She is not pyschotic but her dementia is progressing rapidly. I can tell she is having more trouble organizing her thoughts. It doesn't help much that she spends all day in bed and still sleeps all night. She has battled very serious depression all her adult life. Her day care and PT starts next week so hopefully, she will show some improvement.

Hi Anna,

I'm sorry to be so late in seeing your post. Welcome!
I am so familiar with your situation--the needing of a diversion or relief from time to time; the inability to manage to make those moments happen; longing for support and a pool of friends and family to help share your burden. You have come to a very good, warm, place (ECO) and I'm sure that you will find much friendship, good advice from experienced caregivers, and support here!

AnnaS Writes

quote:

Both her psychiatrist and Neurologist have explained that the long-term use of the anti-psychotics can cause PD symptoms in some people. I have been told that when we elevate her dopamine levels to help the PD, she runs the risk of psychosis.

As Moms_Buddy mentioned a few posts back, your mother sounds very much as though she might have Lewy Body Dementia. My mother suffers from LBD with drug induced Parkinsonisms and the drug that induced the PD was Risperdal (an anti-psychotic). It is a very dangerous drug for LBD patients, even though it does help with the various psychoses. At present, my mother is doing fairly well (not too psychotic) on a combination of Seroquel, Lexapro and Abilify.

With regard to the Parkinsons medications; you are absolutely correct. One of the drugs my mother had been on when she was still fairly ambulatory, but was becoming a huge fall-risk, was Amantadine. This drug is also used in treating some viral infections, but does have useful applications for slowing the physical decline in PD. ON THE OTHER HAND, Amantadine is a anticholinergic medication (a cholinesterase inhibitor). It can cause nervousness and aggitation, and can cause a remarkable increase in hallucinations and delusions in a dementia patient.

Another drug that you may or may not have to consider one day is Detrol or Detrol LA. We used this for quite a while because my mother's bladder spasms were so bad I was spending entire days walking her to and from the bathroom (seriously!). But it also has this anitcholinesterase facet to it. As soon as my mom became completely incontinent I took her off of it, and she did seem to regain some normalcy in her perceptions.

An excellent article on Cholinergic-Anticholinergic Drug Interactions is at http://www.pharmacytimes.com/Article.cfm?Menu=1&ID=2492
if you should be interested in learning more about this stuff. Anyway since Acetylcholine plays such a significant role in the brain, and therefor dementias, these anticholinergic drugs are working directly against drugs such as Aricept, Exelon and Namenda.

Well, it seems that I've written a lot and maybe have only confused everyone. I hope not. I wish you the very best Anna. This can be a long and difficult journey, and you have my greatest admiration and deepest empathy! I hope also that as you and your mother try to work out the details of which meds will be of help to your her, that my little experience may serve to help in some way.

peace to you,
maria

anna, welcome to the forum. many 24/7 caregivers almost become hermits, it is such an isolating job. you say you are not a people person but you now regret not having a pool of friends to draw support from.i can assure you that many of these 'friends' disappear when others become caregivers. they are not comfortable and do not understand what you have to say. they have not walked the walk so don't regret that you did not make more efforts previously.i have one suggestion for getting out, interacting with others that only involves how much you care to put into it. is there a support group in your area that deals with elderly caregiving. it is a way to meet people, share your problems and get feedback. it will break the isolation issue a bit but it may be a jump start into other activities that are more enjoyable. we are here to listen at any time and will give support and welcome anything you learn from your experiences. welcome.

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Originally posted by DOCHKA:
Dear Anna,
It seems you might need some place to go for companionship. We are here and I can't reccommend a better bunch of people to hang out with!
I'm stuck at home alone with mom, it's hard for me too. But this place has been a godsend and I hope you will turn to us for some support.

Your right, I don't want to be a shut in but it is very easy to slide into a situation where you only go to the places that are necessary and forget to build relationships. From reading the many posts, so many caregivers have much more demanding situations then I. I can leave my Mom for a few hours. She is mobile, etc. but I still worry every time I walk out that door. At least now I can tell someone else why I'm scared and they completely understand.

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Originally posted by Moms_Buddy:
[QUOTE]If your mom is high functioning, heck yeah, get her to adult daycare. Fight her being a shut-in tooth and nail! This would also give you some needed time to have a more normal existence yourself!

What kind of gardening do you do?

Normal? It wasn't normal before but it was less stressful I got the gardening bug about 3 years ago. I try to follow a complete organic method. Central North Texas is a hard climate. I try to stick with Texas Natives for the landscape and have to use raised beds for my vegtables. Before my mother got sick, I was looking into the Master Garden Program. I have had to put that on the back burner for the time being. I don't mind, there are tons of books and websites on the subject and I do get out to the local nursey, which I love to visit. Sadly, my mom doesn't like to garden. She never did like yard or house work. Me, I love taking care of a home and making it look it nice without spending $$$$.

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The LO can’t do this for themselves, we are their advocate and for some of us it is a lonely job.

SOME? Heck, for ALL of us it's a lonely job. There is so much research and learning required, not to mention the endless bureaucracies with which we deal. Even family members who reside with us don't understand the issues involved in being on-deck 24/7! And all of that is BEFORE we start talking about our OWN emotions and difficulties coping with the whole trip!

I think most of us agree that we'd have been much poorer for not having found a place like ECO where we can discuss things with others who "walk the walk." In so many areas of life, it makes a difference, but for caregiving, it's a MUST!

If your mom is high functioning, heck yeah, get her to adult daycare. Fight her being a shut-in tooth and nail! This would also give you some needed time to have a more normal existence yourself!

What kind of gardening do you do?

Dear Anna,
It seems you might need some place to go for companionship. We are here and I can't reccommend a better bunch of people to hang out with!
I'm stuck at home alone with mom, it's hard for me too. But this place has been a godsend and I hope you will turn to us for some support.

Thank you for the welcome and the advice. In regards to the Lewy Body, that was ruled out some time ago. I should have explained that my Mom has a long history of psychiatric illness. Going back as far as the 1970’s she has had at least one nervous breakdown and two psychotic episodes that required hospitalization. It actually runs in her family (OH NO!!! Not looking too good for me). Both her psychiatrist and Neurologist have explained that the long-term use of the anti-psychotics can cause PD symptoms in some people. I have been told that when we elevate her dopamine levels to help the PD, she runs the risk of psychosis. She is currently taking 1 mg. of Prolixin & Benztropine, 20 mg. Paroxetine, 1 tab Carb/Levo & 10 mg. Aricept. That’s not all of her meds but the ones we use to treat the PD/Dementia.

Her first psychosis occurred when they took her off of the Prolixin and put her on 1 ½ tabs of Carb/Levo. She was then put back on the Prolixin and a reduced dose of Carb/Levo and was right as rain. In October, her Neurologist suggested we try Neupro (2mg Rotigotine Transdermal System). It worked wonders for the PD but she went psychotic and actually had a bad fall because her judgment was so impaired. We stopped the Neupro and for 4 days increased her Prolixin to 2mg. Again, she recovered immediately. Her psychiatrist does not want to change her medication ever again.

We will see her Neurologist tomorrow and I am going to request intense physical therapy. Since medication is not the answer, I have to find ways to raise her dopamine levels steadily and naturally. If her mood is good, her dementia and PD symptoms are diminished some.

In regards to the home health care, the nurse told me yesterday that Adult Day Care would be much better for my mother because she needs to get out of the house, be with her peers and feel use-full again. My mom is a people person and is high functioning and frankly, I think she is sick of being locked up with me all of the time. However, here in Texas, you can’t have home health and day care at the same time.

I want to thank you all for your support. I think this is a great place to not only come and vent but to find information on dealing with these complicated conditions. The LO can’t do this for themselves, we are their advocate and for some of us it is a lonely job. Again, I appreciate all of your advice and support.

This message has been edited. Last edited by: AnnaS,

Welcome, Anna! The first thing I thought when you began describing your mom's symptoms is Lewy Body disease. If you search the forums for this, you will find that it is kinda like parkinson's and Alzheimers all rolled up into one. It is characterized by hallucinations, delusions, and psychotic episodes. OFTEN misdiagnosed. Risperdal is contraindicated for people with this, so very important to get a good diagnosis.

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Now, all that has changed and I certainly regret not having pool of friends and family to share this burden. I do have a therapist though but she keeps telling me to get out and do stuff and meet people.

Has your therapist ever been a 24/7 caregiver? Friends and family DO still love you, but you have embarked on a journey that makes others terribly uncomfortable and they do NOT understand unless they have actually DONE caregiving, so please forgive them!

You now have an INSTANT pool of friends with whom to share your experience - dat would be US!

quote:

All this happened when she was receiving home health care through Medicare, but that ended today. So now, we are on our own and I am starting to look into an Adult Day Care Program. For some time, I had it in my head that my mother would somehow miraculously get better. Really, I thought that this was some kind of mental illness that she could overcome and I don’t know why I would think such a thing but that’s what I did. Now, I accept that she isn’t going to get any better. In fact, it’s going to get much worse.

First, home health can be ordered by her physician as long as she needs care. They have to recertify every 60 days.

If you share her med list with us, some of the folks here may be able to give you some practical advice about them.

Good luck and many blessings to you for your loving care.

AnnaS, I wish to welcome you here. Many of us are gardners and find peace and comfort there. I care for my mother also, but her problems are more physical in nature. I am not familiar with Global Dementia, but I will be looking into it soon to have a better understanding of your situation.

Thinking that she would miraculously get better is a hope I think we will have about our LOs at some point, Later, we talk management, and then survival.

You seem to be presenting an attitude of love and respect for your Mom. We will do all we can to help you hang in there for her.

Again, welcome here,