For those who care for someone with Parkinson's disease
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By Alexandra On 2011.12.01 16:40
Hi I have just discovered your forum when I went looking for a support group. After spending a few hours reading it I am feeling better already. My mom was diagnosed with Parkinson's several years ago. She is now 77. I am an only child and divorced and she is divorced and we have no other family here. I am it. After her diagnosis I moved in with her and took care of her full time. I also took over and expanded her business. It didn't take long for me to burn out. I tried to get outside support but she didn't want anyone in her home. She wanted me to do it all. After she fell 3 times I knew I had to do something so I called in the local long term care representatives for advice. The waiting list to get into a long term nursing home in Ontario, Canada is usually between 6 months to 3 years. Unbelievably, we got a call within 48 hours that a room had opened up. We had to decide within 24 hours or you loose your place and can't even get back on the waiting list for 6 months. We went to see the home and it was a lovely room with a river view in the nicest part of town. So we decided to take it. My mom had stoped eating basically and had lost 20 lbs in 6 months so she was down to 90 lbs. It didn't matter what I did she refused to eat. I was desperate and I think the nurse from the agency recognized that I was at the end of my robe and pulled some strings. Anyway, the first month was great. My mom gained 10 lbs and seemed reasonably happy. However in the last two months the situation has deteriorated. She has completely withdrawn has started to refuse eating and it not excepting of anyone or anything at the home. She has told me she has nothing to live for and wants to go home. She essentially told me that she gave up her happiness for mine. I feel so guilty that I placed her in the nursing home. She seems so unhappy and even though I go to see her often and usually spend at least 4-5 hours at a time nothing seems to satisfy her. She had made me promise her in the past that I would never put her in a home and in the end it is exactly what I did. I just felt that I could no longer coupe. I felt that if we continued the way we were going she would stave herself to death and I would end up in a nut house. Now I have been able to stabilize the business, sell her home and even establish a bit of a social life. But every time she calls or I go to see her I have this overwhelming sense of sadness and guilt. I had to stop talking about it to my friends and boyfriend and my father because I can tell they have heard enough. It just seems that even though she is in a home my whole life is still completely dominated by Parkinson's.

Thanks for listening!

By susger8 On 2011.12.02 08:09
Guilt of some kind is just about inescapable for caregivers. No matter what decision we make, our loved one is going to decline. And no matter what we do, our PWP is likely to be unhappy.

I always feel it is unfair for a person to make a spouse or child promise never to place them in a nursing home. It's a kind of emotional blackmail. I would probably have made the same decision that you did. It sounds as if she was not thriving at all at home and would have declined even faster than she has in the NH.

She is unhappy, but she would be unhappy at home too. She is unloading her unhappiness on you, which is miserable for you to experience. Just try to remember that you did everything you could. You can't cure her PD, and you can't restore her to her former life.

This is a good place to vent. I hope you will stay in touch with us.


By chroop67 On 2011.12.02 10:02
When my dad passed away 2 years ago i tried to care for mom. I was at her home 3-4 times a day. We would go out occasionally but she preferred staying home. I thought that somehow we could make it work so she could stay in her house. We had homecare come in for meds but she would not let them bathe her, she would sometimes go many days without showering. She hardly ate and I worried constantly. Finally a year later I made the decision to move her into a nursing home. It was a process but amazingly she got into one in our own community. I understand how you feel, yes she has declined and she often cries about how she would have been happier in her own home but she was declining there and stayed in bed all day long. She still stays in her room a lot but at least she is not alone and I have peace of mind. It is true, though, that even though she is in care I am still her primary caregiver and she phones A LOT and is quite needy. It is an exhausting journey but we just do our best and have to recognize that unhappiness and a chronic declining illness go hand in hand.

By Alexandra On 2011.12.02 11:41
Thank you for your relies. Even just writing it out made me feel better. My mom is actually a very giving and understanding person. She is scared and reacting in ways that are not normal for her. We are extremely close and that makes this even more painful. In some ways I have been in a state of denial, praying that somehow she will improve. We kept hoping her diagnosis was a mistake. Now that she is in the home we are both coming to terms with the new reality and I hope that with acceptance will come some level of peace.

By RhondaM On 2011.12.03 09:36
I can relate to what you wrote. In 2002 the same thing happened with my dad who had PD. He finally asked to go to a nursing home nearby and we visited it together and he chose to go, mainly because his care was literally killing my poor mom at home and he wouldn't let anyone else take care of him. So we were able to get him in the nursing home he chose and he was happy for a while, but then soon began to complain about things, just like he did at home, and he once told me that we chose my mother over him, and that hurt me a lot and I felt a lot of guilt. However, my mother would bring him home for the day twice a week and it never failed that after a few hours he was asking to go back to the nursing home. Whether he liked it or not, he felt more secure there, and he was bored and restless at home. He was unhappy no matter where he was, but I think he finally realized he was better off where they could take care of him and accommodate him much better than at home. He died of aspiration pneumonia in 2003 due to his inability to swallow well, but those last few weeks he seemed more content and happy than he had been in 15 years, and I think he was just ready to go to his eternal home.

I think the others were correct that your mom would be unhappy anywhere and is just grasping at straws, thinking she would be happier at home, which she probably wouldn't. You made the best choice at the time.

By Alexandra On 2011.12.03 10:27
Thanks Rhonda for your response. I know that you are right. She wasn't happy at home either and really not safe since I couldn't be with her 24/7. When she complains I am not going to take it personally anymore. I was blaming myself for her discomfort. It is just so hard to watch helplessly as someone you love suffers so much. God bless your father...he is in a better place.

By housemouse On 2011.12.05 23:13
I can relate to the worry and guilt that you all are expressing. My husband is miserable because of his Parkinson's symptoms, and is making my life with him equally miserable.

I am getting counseling, and the counselor tells me that his problems are not mine, and that I shouldn't let him manipulate me by constantly making me feel responsible for making him comfortable, demanding that I stay by his side, and controlling my every movement.

He will let me walk our little dog (3 times a day, for only 10 minutes at a time), but will get upset and anxious if I do anything else.

He is constantly flushing and anxious, and gets upset if I want to leave him for a break from his misery. He won't do anything suggested by his docs, like exercise, socialize, read, do puzzles, etc. It is as if he just wants to wallow in his misery.

This is so unlike the man he used to be, and I am trying so hard not to resent the change in his personality.

I feel guilty for that, and feel angry that he won't try to do anything to help himself. Then I feel like putting him in an assisted living facility, and getting on with my life, and then feel guilty about breaking our marriage vows.

Finances are also a problem, and our adult children are counting on me to keep them from the financial burden of assisted living.

I am relying on wine at night, to relax, and know this isn't a good idea, health-wise. But, not sure what else I can do to relieve the stress. Every day is so difficult.

By LOHENGR1N On 2011.12.06 00:02
housemouse, Sounds like He might be suffering from depression also if He doesn't do anything. It will be hard but you'll have to not enable Him to do nothing to help Himself. If weather permits and He can walk a bit tell him you'll be in the yard if he needs you to just come out on the porch and holler to get your attention. I'm not saying to abandon him inside just get him doing little things he can do and do safely.

Please don't take this as Me singling out anyone person because I'm not, I am addressing those reading this posting. Something that Caregivers/partners do many, many times is almost from the diagnosis is to take over. You know, make it easier on those afflicted. Doing things for them because they fumble or are slower at stuff now. Because they seem to struggle to do things they never had trouble doing before. With love and well meaning we can set the stage to fast burnout and resentment. Soon the Caregiver resents "having" to do everything. Everything mounts or builds up to an intolerable mountain of tasks. Patients can feel useless not able to do anything. Then if they try and fail it spirals out of control they're worthless and making more work for you to do. Start slow remember We can plop toast into the toaster while you cook the eggs. We can do a lot of things still albeit slower but end result if not just as good it's passable. Get a bird feeder, hang it by the window ask them to help bring out the seeds, if they can do it safely the next day ask them to fill the feeder while you're doing something else (so what if they spill some seed the birds scatter it anyway) then they'll have a chore of their own to do daily. Be inventive according to your situation and their ability. Soon they'll have chores they enjoy and a sense of worth too! You'll both feel better. Their helping you (even if it's staying out of your hair for a moment or two) and you're both feeling better about yourselves. Okay I'm getting off the soap box now, take care, best of luck and hang in there.

By lassie On 2011.12.06 03:09
I just discovered this forum.

I too have immense guilt about my 73 year old mom with PD. She was in assisted living for 8 months and hated it. Funny before she was diagnosed, she always said to send her to that particular (Catholic) home when she was unable to take care of herself. Well, once she was there, she blamed us for sending her there, selling her house, removing her car, etc. I visited every morning for my dose of guilt and she laid it on thick. The food wasn't any good, the people were judging her, they were going to bury her in the snow (it is San Diego, not likely) The last straw was when she had a bad fall in the bathroom and pushed the call button and no one came for 15 minutes. She had to crawl out to the hallway. I removed her immediately.

Now she is in my home and I feel guilty about wanting her gone. She can barely shuffle or talk. But the talking she does is all complaints. This isn't the strong woman who raised me. An imposter has taken over her body and mind.

The first month she was here, I escaped upstairs A LOT to "go to the bathroom". She probably thought I had a UTI, lol. Now I have assistance 4 days a week paid for by her long term care policy. When they come, I literally go to a mall and sip coffee and read. It is so liberating. When I return, she pouts and says I don't like her anymore. All she wants to do is be with me. But I can't stand the sucking of her gums to keep her mouth closed, or the vacant stare, or the non responses to my simple questions. I have to get away on those 4 days for her sake and my sanity. I feel guilty even voicing these complaints.

What keeps me going is my 13 year old daughter. Us 3 girls have our rituals at dinner, and shared love of ice cream at night. I know I'm setting a great example for my girl on compassion and love. I hope she never has to take care of me this way.

The first month Mom was at our house, I did EVERYTHING for her. I wanted to but I think she resented it. Now it has been 3 months and we have settled into a routine where she has "chores". She is so weak she cannot do much, but what she can gives her pride. She "sets" the table, "makes" her bed, and lays out her clothes. We have a bird feeder outside her window and she has to alert me if it is running low. I know it isn't much, but it helps.

Take care. You are not alone

By Alexandra On 2011.12.06 23:40

When I read your post I started to cry. I wish I could bring my mom back home but I just can't. She is so weak she can't even get out of bed and I have to work to support myself. She is starting to have trouble swallowing and feel like she is choking. She told me that she has fallen twice going to the bathroom at night in the last week. She begged me not to tell anyone so that they don't make her leave the door open. She cherishes her privacy. I don't know what to do. I don't want to go against her wishes but if she falls and no one knows it could be all night till someone finds her. But if I tell she will never forgive me. It's an impossible situation. I keep thinking of all the things we still wanted to do and all the times I didn't appreciate her. She is suffering so much so I wish her suffering would end and then feel guilty that I feel this way and well crying just feels good.

I have a question. My mom sweats all night every night now for almost 2 years. Does anyone else with PD have this symptom. We think it could be a side effect of the L Dopa. When she went off the L Dopa for a short time she stopped sweating but her tremors got really bad. The neurologist hasn't given us a definite answer on this one. She has to change her PJ's a few times a night and as she gets weaker this becomes more and more difficult. Plus she must be getting really dehydrated. I try to get her to drink a lot of water but swallowing is difficult. The nursing home staff are doing their best but when I had her at home I took care of her 24/7 every minute of every day. She isn't getting that kind of attention at the nursing home.

By lassie On 2011.12.07 12:23
Hi Alexandra,

Sending big hugs your way. It seems there is never an easy answer, huh? PD seems to only give us a choice between bad and worse.

When my mom was in the nursing home and unable to get to the bathroom by herself, (let alone roll over in bed), I requested that they check on her every 4 hours to take her to the bathroom at night. It seemed to work for awhile. Maybe you can request the same thing for your mom so she isn't a fall risk at night. Maybe a bed alarm?

While my mom doesn't sweat at night, she has incredibly hot hands and feet. In fact, she sleeps under 3 blankets but only a thin sheet over her feet to equalize it somewhat. I don't think Mom is on L Dopa. Her tremors are getting worse and they recently increased the dosage of her Requip.

When the guilt gets overwhelming, I remember that Mom has always wanted the best for me. Pre-dementia Mom would never want me to run ragged taking care of her, or feeling guilty I can't do more. My mantra is I am doing the best I can. On good days, I feel I am doing her proud. On bad days.... well, glass of wine is a good thing to have. I, too, like a good cry.

Stay strong :)

By LOHENGR1N On 2011.12.07 14:30
Hi Alexandra, Yes excessive sweating is common with Parkinson's Disease and can be caused by our bodies trying to assimilate (absorb our medicines). When I say excessive I mean soaking wet dripping with sweat! I've noticed that sometimes Doctors won't give definitive answers or seem to just pass by some questions. To Me many times these questions pertain to something that is commonly known to the Doctors and they seem to dismiss it as if it should be common knowledge to us laymen also. Again it comes back to weighing the benefits of a medication verses the side-effects as in your Mom's case the sweating verses the increase of tremor. With dehydration coming into the mix now that also has to be added into benefits verses dehydration plus increased tremor. When you're at the Neurologist next time with your Mom mention these problems so They will see it isn't only one but there are now compound problems surfacing. Take care, best of luck and hang in there.

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