For those who care for someone with Parkinson's disease
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By tserrata On 2012.01.11 00:27
My mother has been diagnosed with Parkinson's and Alzheimer's. We have had therapists come in to help me to understand what to do with her. Lately, she can't remember how to put on her Depends but she can remember how to put on pants. She doesn't want to do anything. Things she enjoyed doing two months ago, she now says that she hates. She gets mad when I tell her she has to do things because the doctor wants her to. She would prefer to just lay down all day. She is up from 2:30am off and on....She has become very sneaky and lies all the time...She even told me that I would like to cut her open and rip her guts out because I told her she had to eat. And the language....Wow! She puts on a show when people come to visit but she is nothing but ugly to me and my brother. We have her on a strict schedule, but no matter how little she sleeps during the day, she is up all night. I am at my wits end...I do everything the web sites suggest and can't seem to help...She even threatened to call the cops when i told her she had to do her exercises. My mother was never a nice person and has always been manipulative. She has always wanted everyone to feel sorry for her and to do everything for her. I won't do things for her that she should do for herself and she gets so ugly. The funny thing is that the more mad she gets, the better she can do for herself...My family, which is pretty large, doesn't want to know what is going on nor will they help us. My brother and I never get a break. Does anyone have any advice for me on how to deal with all of this?

By susger8 On 2012.01.11 07:40
That sounds like a tough situation. Many people with PD awake during the night or have bad nightmares. Some people have better sleep with low doses of Seroquel. Sometimes Klonopin helps (although it made my dad very groggy during the daytime). You could ask your mother's neurologist about these medications.

The nastiness and uncooperativeness can be part of the disease -- sometimes it seems to make already difficult people worse. Sometimes the PD meds contribute. I don't have any real solution to that, other than (again) to discuss it with her neurologist to see if her medications are optimal.


By chroop67 On 2012.01.11 10:21
I think that so often with this disease there are only questions without answers. I feel for you and your difficult situation and it is made worse by family members who don't want to know. Are you able to look into getting your mom into care? It doesn't eliminate the stress but it does diminish it slightly. You are lucky to have your brother helping you. Sometimes all we can do is share our concerns and know that there are others who share our plight. My mom is in care and she suffers from dementia. I get several calls from her a day, most of them are anxiety filled and not rational. I wish her life was different, I wish for so many things but all I can do is take advantage of her good days and endure the bad.
Keep talking, keep sharing and hang in there.

By tserrata On 2012.01.11 23:49
Thank you for the advice and the kind words. I am going to have to start taking a tougher stance with her doctor and make him actually listen to what I am saying. His idea to help her sleep more at night was put her on medication to slow down her bladder so she wouldn't wake up thinking she had to go to the bathroom. I came into this about 6 months ago... She was diagnosed about 3 years ago. I lived out of town and she was being taken care of by her male friend that I now believe has dementia also. So a lot went on before I got here and took over. She was basically doing nothing but sleeping and had lost probably 40 pounds. It has been a battle to get her to gain weight and basically learn to walk right again. Healthwise, she is doing a lot better. Mentally, she is getting worse everyday. She isn't seeing a neurologist. The doctor never sent her to one. She wasn't even put on meds for Parkinson's until about 4 months ago. She was basically only on Aricept for the Alzheimer's. As far as getting her into care, this family doesn't want her to go into a home. They just don't want to do anything to help. And of course, talk about us and what they think we are doing wrong. The whole situation stinks. I will do whatever I can for Momma until I can't anymore. Then, hopefully someone will step in to help or make decisions that I can't and won't make alone.

By susger8 On 2012.01.12 07:23
I think the first step is to get her to a neurologist -- preferably a movement disorder specialist. Getting the meds right is important.

Another thing would be to get her a social worker. You should be able to get someone from the city or county where she lives -- look online for the Office on Aging or some similar name. This is normally a free service. There are a lot of helpful programs available, but they are hard to find -- a social worker knows all of them and can help figure out what her needs might be. A social worker will also evaluate the home environment (or connect you with someone who can do that) to see if she needs any equipment or any changes such as grab bars and whatnot.

Good luck to you!


By parkinit On 2012.01.14 18:13
I feel for you as well. It is tough having no one to help - whether you are the child or spouse. The others who "don't want mamma to go into a home," really don't matter. If they don't want to help to keep your mom out of the home, why do they get a say? I would suggest you all have a schedule where you take turns taking care of your mom so no one has the brunt. Have a family meeting to discuss this since they feel so strongly, they need to be proactive in how to make this happen and not expect a few people to bear the brunt of the care.

Also, I agree that klonipin (clonazepam) helps with sleep at night. Also, to counter the sleepiness, Provigil (modafinil) may be prescribed to help wake the PWP up first thing in the morning. We still have restlessness at night - awakening 3-4 times during the night, for one reason or another, but I can't imagine what it would be like without the clonazepam. We were taking seroquel for awhile as well, which does help. My spouse wanted to remove it though, so we have.

Good luck. It's tough being a caregiver when there is no appreciation whatsoever shown to you.

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