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Topic My dad has parkinsons, posting this for my mom, need help please. Go to previous topic Go to next topic Go to higher level

By deedeesdaughter On 2009.08.25 22:27
Hi everyone,
I am so thankful that I found this site. I have lurked for a couple weeks, and am hoping someone here can give us some insight.

My dad has parkinson's. He can not walk without a walker, he has to have help to get up from a chair. My mom has to help shower him and she has to help him with all bathroom issues.

He uses special spoons to feed himself, but as of late, has had throat swelling and has issues with swallowing.

He has started wandering through the house at night, he hallucinates more and more, seeing people, talks about things that don't make sense, and slurrs his words more and more.

He sits in his chair with his hands curled up, sleeps in bed and says he gets tangled in his sheets, when he isnt. He calls my mom numerous times through the night to help him urinate.

He is constipated a lot, and has to take meds to help him go.

My mom can not leave him at all for anything....and she is tired.

Now, the whole reason I am posting this.....My dad is on Sinament (sp) and wants to have sex with my mom all of the time. He is 78 years old. My mom is in her early 70's and between caring for dad full time and tending to his bathroom needs everyday....has no desire. My dad is incapable of sex, but does not understand this. He hounds my mom night and day. Every day. Non stop.

She didn't let us girls in on this until the middle of July when she just couldn't take it anymore.

My two sisters and I sat down with dad and told him that he needs to stop with the sex thing as my mom is near a break down as it is, and she does not need this. He said he didnt know he did it.

My mom has even made a calendar for my dad to show what goes on each day, as he can not remember, and has included how often she tries to "help" him with sex.
We thought we got through to him, but to no avail. He will not give it up. He badgers her every day and wont stop.

Last Tuesday it came to a head when my mom said she was leaving dad because she could not take it anymore. I talked again with my dad, but it was if he stared into space and didnt even hear me. He just had a blank stare. He said he would be good.

He still wont stop. My mom was in tears again today. She is at her wits end.
My dad said he will not go to a nursing home the VA hospital or anywhere else, and has considered calling a suicide doctor. I took all the guns out of the house, but we still worry about our mom. My dad is getting more aggitated with each day, he hallucinates alot now and we are worried our mom is being a bit nieve about what dad could be capable of since he does not even know what he is doing most of the time.

Can anyone tell us if my dad "knows" he is doing this sex thing...or if it is the medications he is taking? Is this obsession normal for Parkinson patients??

His movement disorder doctor has moved, and now we are waiting for a October 19th appointment to see a new doctor.

Can anyone help us with this????

I am so sorry this got so long winded, I just have to find a way to help my parents.

In home health is too expensive at this point, so my mom is trying so hard to hang on....but her health is important as well....
I am going to print any replies I hope to get, and give them to her for strength.

Thank you so much in advance for any help or insight you have.

Dee Dee's daughter, Mary Ann

By annwood On 2009.08.25 22:53
Sorry that you and your family are going through all of this. Everything you describe can be seen in many advanced PD pts. In my experience your father is showing signs of dementia and the sex problem is very common. You can read former postings on this on the site. He does not have the ability to reason or to remember what he has done. To talk to him about this is probably a waste of time. The hallucinations may be the result of a combination of the PD and the medications. Many of us have found that lowering the med dosages actually does very little to alter the bizzare actions. There are anti psychotic medications that might be of benefit.

The difficulty with swallowing is a symptom of advanced PD and leads to aspiration of food and liquids which in turn can lead to pneumonia.

It is unfortunate that you do not have a PD physician available to you because I think you need to see someone way before Oct. I would contact this new physician and stress the critical nature of the problems.

You do need to be aware of safety issues for your mother. Your father could harm her and not even know he is doing it. Is it possible for you or your sisters to take turns staying with them during the night?

Stay with us and we will try to help.

By Emma On 2009.08.26 05:12
DeeDee and MaryAnn - My heart goes out to you. It sounds like your husband/father has many of the same issues, albeit more advanced, that my husband has. Sometimes it can feel like living in a nightmare from which there is no escape.

I agree with annwood, you need to see the doctor way before October. Call the office back and tell them that there are safety issues and that you need to be seen ASAP.

For me the sexual obsession and constant badgering is the worst thing to deal with so I understand completely what you are going through. When my husband was diagnosed with PD I thought that we were dealing with a strictly physical disease and I was prepared to handle that and do whatever needed to be done to help him. What I wasn't prepared for was the cognitive and behavioral aspects of the disease. I can do personal care all day long, I can even repeat myself a hundred times if I have to. What wears me down is the obsessions, the poor judgement, the unreasonable thinking. Somedays I feel like I'm living with a hormone driven 200 pound 5 year old.

You are not alone, we are here for you. Right now, however, you need to get more immediate help. Please call the doctor back.

By bandido1 On 2009.08.26 12:09
MaryAnn: Patient Bob here: this is the first time I have addressed this delicate subject on this forum. See my next post.

By bandido1 On 2009.08.26 12:43
Mary Ann: Patient's views: apparently this is a delicate subject for both caregivers and patients alike. I participate in two other forums that are largely patient driven,and the subject of sexual fantasies rarely appears. I suspect it is a combination of timidity, lack of knowledge, and an inability to provide any creative solutions to the problem.

I think the advice you've received thus far has been good. Your mother must discipline herself to ignore 99% of what your dad does and says. He is apparently in his latter stages. Those of us who have been fortunate thus far to avoid the extremes experienced by your father, nevertheless go through the same cycles to a lesser degree. As will be evident from my posts which I encourage you to read, I'm nowhere near the final stage. As is the case with your father, my body is in terrible shape, but my imagination is very active. Therefore, my mind tells me having sex would be nice while the body says "are you kidding me?"

I am assuming your father is Medicare eligible. If so, contact them and discuss requirements needed to make him eligible for either hospice care or a Home Healthcare service. It sounds to me like your mother is overwhelmed with caregiving duties. She needs help! Good luck! Bob C

By lynn On 2009.08.26 14:55
Emma You are dealing with a hormone driven 200 pounds 5 year old and so am I.

By WitsEnd On 2009.08.26 17:08
Bandido's and everyone else's advice is good. Check on hospice--that's 100% covered and includes some things like bed pads and meds. Call the doctor now to see what you can do about med adjustments too. Don't wait until October--although if you get him into hospice they will have a visiting doctor who can probably answer questions in this area as well.

Also, this is going to hurt, but it has to be said. Your dad--the person you knew and loved--isn't the one you see today. Parkinson's has stolen that. It's hard, but try your best not to hold anything he does or says against him. It's not his fault anymore than it would be if he ran into you because he was blind or didn't respond to your talking because he was deaf. It's a physical limitation. Cherish the times you had. The later stages like this are very, very hard. My heart goes out to you.

You will be in our prayers. Good luck.

By deedeesdaughter On 2009.08.26 21:39
Hello everyone!
Thank you so very much for your kind, heartfelt words....
I was working all day, so I am just now home to reply.
My mom is going to take my dad to a neuro doc tomorrow at 1:45 pm, in the town they live in. I had called this office in desperation about a week ago, trying to get a appointment for my dad at a bigger hospital, in a bigger town. The movement doc my dad was seeing, moved, leaving 800+ parkinsons patients displaced, so the office I was trying to get my dad into, just could not take him.
The new office told me that if they had any cancelations, they would call us....and today....they did! The new place is just a neuro doc, not a movement doc, but hey, we will take it.
I called hospice today, and they told me they only help when a patient has been given 6 months or less to live. No one has told my dad anything like this, so I am unable to do hospice.
I was given a couple numbers to a agency that helps disabled seniors, and will call them tomorrow after dad's appointment.
Both of my other sisters (Hi KK and Leslie) are reading this forum every day....all 3 of us girls have learned so very much from each and every one of you. I told my mom that I posted here finally, but she is scared to read this. Cant say that I blame her.....it is really hard to watch what parkinson's does.
You folks here are fabulous. Thank you so much for welcoming me, and my family into your forum as you have.....Our thoughts and prayers are for each and everyone of you that have been touched by this horrible disease.
I will update tomorrow when they are done.
Thank you again so much! ((gentle hugs to you all as well))
Bob and Dee Dee's daughters.....Mary Ann, Katheryn and Leslie

By susger8 On 2009.08.27 08:45
Hi, DDD, Actually the current qualification for hospice is having a terminal disease with no chance of recovery. The 6-month rule is no longer in effect. Someone with late-stage PD should definitely qualify. Maybe you could ask the new neurologist.

If your family hasn't been working with a social worker, you should check your city or county Office on Aging (might have a different name). A social worker can be incredibly helpful in negotiating all the bureaucracy of senior care.

Hope all goes well today --

Sue

By deedeesdaughter On 2009.08.27 22:23
Hi all!
Here is the update on my dad.
They went to the new Neuro doc today. My mom told my dad this morning that she was going to bring up the "sex" thing and that he needs to be ready for that. He said ok. My dad takes 200mgs of sinament 4 times per day. Is that a high dose? He was taking another med, I cant think of the name, but it is supose to help hold the sinament over a little longer thru the night. The neuro doc stopped that med, to see if the sex thing will let up. He told my mom that he sees that alot in older men with Parkinsons and on sinament. My dad got really mad and told the doctor that "It wasnt as bad as mom made it sound". My mom said that he knew that the doctor knew it WAS as bad as mom had said, so hopefully by taking the extra med out, it may help. It my dad's parkinsons gets worse without that med, they will re introduce it again.
My dad was misdiagnosed several years ago (He has had parkinsons all along) and a neuro put a shunt in his head. The first on was replaced with a second one, and the surgeon drained fluid off too fast, giving my dad a brain issue that put him in the nursing home. I busted him out....in a wheel chair....ran down the middle of the road to my parents house....(This is that gotta laugh stuff :) ) and after the brain swelling went away....dad got better. Prelude to this:
This new doc ordered a cat scan for next week to check the shunt.
They go back to go over all of this in 3 weeks.
So as of tonight.....my dad is very upset with Mom for talking to the doctor about the sex thing....but who cares......it really upsets mom.
So, that is what is going on. Sue, I called hospice because my sister told me that the current qualifications are as you stated, but when I called they told me that the patient had to have only 6 months to live. Shaking my head at that one.
I want to thank you all for being there for our family.....we come to this site every day.....numerous times myself.....and my heart goes out to each and everyone of you.
Thank you again for listening.....
Mary Ann

By susger8 On 2009.08.28 08:40
Hi, MaryAnn, maybe you could see if the new neurologist can get the hospice people going. Sometimes that works if you're meeting resistance.

The med that was stopped was probably Comtan -- it extends the effectiveness of Sinemet. But it can contribute to unwanted side effects as well, so it sounds like discontinuing it is worth a try.

Good luck!

Sue

By WitsEnd On 2009.08.31 17:23
The 6 month diagnosis is a doctor's opinion. Doctor's don't KNOW when somebody is going to die. They go based on the type of disease. Some people have been on hospice for YEARS. It just gets extended every six months. Late stage PD qualifies. All you need is a doctor's orders. If your current doctor won't write one, call the hospice and explain the diagnosis and ASK if they can refer you to a doctor that can write the orders.

Accepting that 6 month number can be mentally and emotionally challenging. Please don't let that stop you from getting the help you need.

Sugar8 was also on the money about social workers. I would also start looking at nursing facilities and options for longer term. Those facilities usually have social workers and they can give you suggestions as well.

Good luck and God bless.

By deedeesdaughter On 2009.09.01 21:49
Thank you all.....
My mom and the neuro stopped the comtan, and my mom said that "they have had some good days" (doing a happy dance).
I was there today, but did not go in, as my son has a horrible, horrible cold and being his caregiver, I did not want to risk taking germs into their home.
I asked her if he was still talking the "sex" thing and she told me no, and that she does not want to jinx anything, but it has really helped.
It has only been a few days.....but we will take it!
Thank you for still thinking of us......I lurk here every day, and keep each and everyone of you in my thoughts and prayers. This board is my new haven.....you are all such remarkable folks!
Hugs to you all.....and God bless you all as well.
oh and I forgot.....he had his cat scan on Monday and we will get those results on the 19th of September.


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