For those who care for someone with Parkinson's disease
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By housemouse On 2011.12.28 19:49
My husband is in rehab right now, recovering from cellulitis that knocked him right down flat. This has been a miserable time for us.

My adult daughter lectures me from afar, as if she were my parent, on how I should do better by her Dad. She has no idea what dealing with a recalcitrant Parkinson's patient is like.

My son, who is close to us, bounces back and forth between "taking charge", and telling me he can't "take charge", because of the demands of family life and career.

I am getting counseling - and my counselor tells me that I have to take charge, stop being yanked around by the adult kids, and also stop letting my husband control and manipulate me.

I suspect she is right, but this is so hard to do. She thinks that my husband should be in assisted living (for which we do not have the assets), because he uses me to avoid doing any of the things that would help him, like maintain an exercise program, socialize with others in our senior independent living center, do crossword puzzles, read, etc.

Instead, he sits in his lift chair and complains constantly about his symptoms.

I think he is failing, mentally. My son says no, he is just being stubborn about having his own way, and doesn't want to co-operate because he has always had his own way - controlling our lives.

But neither of the adult children feel obligated to help with the dailies, leaving me alone in a senior unit with a man who is no longer the man I married. Our financial resources are limited.

Counselor is encouraging me to get an elder care lawyer, figure out a way to get him into long-term care, so he can no longer escape physical therapy, social engagement, etc.

What to do? I am frustrated with his behavior, which is so unlike him. I get angry, but keep it inside. She says that each of us have had a 45 year walk along the path of marriage, and that our paths are going to be separating.

That my frustration and resentment will grow, and that I can be a more loving wife if I am not having to deal with his psychological issues.

My son wants me to tough it out as long as possible for financial reasons.

I want to go to bed, pull the covers over my head, and sleep until this nightmare is over.

I have spent my entire life doing my best to take care of others, and now feel abandoned, anxious, and unsure of how to handle this situation.

I dread the next infection, the next fight to get his required 3 nights in the hospital, so he qualifies for medicare coverage. He comes back, physically, but mentally - just gets worse.

He is good in the morning, but starts going downhill around 3 in the afternoon, give or take 30 minutes.

By LOHENGR1N On 2011.12.28 23:56
housemouse, There are never any easy answers with Parkinson's it seems. On the subject of counseling as I've said before here, unless you can find one well versed in the effects of Parkinson's disease you end up with two apples (the consoler and yourself) discussing ways to make an orange (the patient) become an apple. While I'm sure your consular can help you find ways to deal with your adult children. From what you wrote She is lacking in dealing with the effects of Parkinson's Disease on your husband and subsequently yourself. I say this because she said your husband is controlling and manipulating you when in fact he's doing the best he can to stabilize himself and the world he now lives in. The rules are different and a way to coexist is needed. Not a force him back into a world that he isn't able to function in. The advice to find a lawyer and figure out a way to get him into long term care so he can't escape physical therapy , social engagement etc. shows a complete lack of understanding this disease and it's effects and the effects of our medication. Doing this is akin to putting the orange in a crate of apples saying and thinking that will force the orange to become an apple! I don't blame you for wanting to climb into bed and pull the covers over your head until it is all over! I think I'd ask advice for dealing with the children and or ask if the therapist could recommend someone more versed in dealing with the Parkinson's Disease as Her advice doesn't seem to be from one with experience that will benefit Yourself and Your Husband. I hope this is of some help as I don't want to upset you but I also don't want you going needlessly through some of the problems that will occur following some of that advice. Take care, best of luck and hang in there.

By rmshea On 2011.12.29 09:41
housemouse, In my limited experience, no one knows Parkinsons like you do..your children don't, the counselors don't, and even a lot of doctors don't. They may have learned about the disease, but they don't know how to live with it. I have found out recently that there has to be a 'chief' decisionmaker--and that chief must lead in doing what is best for PD'r and caregiver. There is no 'single' best answer and I had to stop looking for one! The trio of siblings, all near 60 yrs old, just stand around wringing their hands while I have researched, managed, etc. all these years. I was looking for 'their' approval and input, and turns out, I was the only one informed enough to make the final decision. Is it the right one? Time will tell. I am blessed to have friends in the same situation as I and there is emotional and spiritual support. I will pray for your strength and wisdom in the days ahead.

By poppadum On 2011.12.29 11:52
Hi Housemouse, do you feel like you're stuck between a rock and a hard place? I still do sometimes.

I've been following the advice of my counselor who seems to be very "with it" when it comes to PD. She tells me that I must not feel guilty because I AM doing MY best and I DO love hubby even thought at times I can still be pretty cheesed off with him. I told my counselor that in my mind I have created a "third person" called Mr Parkinson and how this helps ME to deal with some situations. I talked about it with hubby and we now both blame Mr. Parkinson (sometimes aloud) for whatever we don't like. It seems to work for us.

I got so fed up of people telling me what to do that I just tell them to walk a mile in my shoes and THEN tell me what to do.

As hubby has a severe heart condition I've had to take charge during some of his heart attacks as it is hard for him to register things properly during an attack. There have been times when he refused point blank to take a Cedocard tablet. The 1st time I gave into him so as not to get him even more upset. After that I just forced a tablet under his tongue and kept it there until it had melted. It's the lesser of 2 evils. It's a also a life-saving necessity.

As for hubby's meds, he won't let me go to the neurologist with him. I have had the same neuro (old head injury giving me problems) for years so I can contact him when necessary and update him on hubby's situation/get info on hubby which the neuro thinks I ought to know about.
I check hubby's meds while he's not looking and so far he takes what is necessary. However, as soon as this no longer happens I intend to intervene (firmly if necessary) according to the advice of our neuro.
When I know for sure that it's for the good of the patient I can stand pretty firm.

I must admit that I have no trouble with our "offspring" as the eldest of our 2 sons who is the only one who visits (the other one hasn't been to our home for 8 years), tries to understand both hubby and me and doesn't interfere negatively at all. On the contrary, he asks how things are and goes a long way to help/please my husband, which is a true blessing.

By housemouse On 2011.12.29 18:04
Right now I am playing phone tag with all of his regular docs - primary, neuro, and psych, because the TCU doc is prescribing Ativan to try to get his panic attacks under control.

The nurse-practioner recommended this (calling the neuro) to see if he (the neuro) would do more than the minimal screening test for dementia. This seems like a hot potato that none of them wants to deal with or diagnose.

Dear husband has a very high IQ, excellent memory, and passes the simple test used, but I have seen his ability to deal with executive function, make decisions, process paper, etc. decline over these past years, and his depression and panic steadily increase. I also notice his word recall continually declining.

The TCU doc is not a neuro, but is doing her best. He is doing well physically, but his mental situation is going downhill. He couldn't talk to me today, and couldn't talk to his dearest and best friend for years. His panic attack was too severe.

I now know a bit about Dante's rings of hell, even though I have never read the book. I can't get an answer from any of these docs about what is going on.

I realize my husband doesn't have a typical Parkinson's. I do not know what to do.

By poppadum On 2011.12.30 11:02
When hubby visits our neuro or when we have visitors hubby tends to be much more alert during that period of time than when he's just with me. As soon as the visit to the doc/visit from friends is over he seems to "collapse" and needs urgent rest as if he's been doing "heavy work".
From PDP-friends I learned that some of the PDPs whom they take care of, tend to do the same which gives the neuro a "false" result, sometimes resulting in misjudging the meds strength needed for hubby to function optimally.
Maybe something for you to look at when your spouse is being assessed?

By Reflection On 2012.01.02 16:48
Dear Housemouse - I hear your pain, and your desire to please everyone, and how hard it is to do so.
For your adult daughter, I don't suppose it would be possible to arrange for her to give you, say, a weekend respite - for you to see old friends, or relatives, or go to town and see some theater and music, or whatever. Even if your husband is on best behavior, she might be a lot more sympathetic and supportive after she sees what you do every day. And if she can't give you a weekend respite - what right does she have to give you any advice? !!! ??? !!!
For your son - at least he's trying, sort of, though not as helpful as he could or should be.
I'm not sure about your Counselor. She doesn't seem very sensitive to/realistic about your financial constraints, though her advice about the elder care lawyer is perhaps designed to help there. But I get the sense you feel as bullied by her as by your kids. Maybe she's right, and she's trying to get you to accept what you need to accept - but then again, maybe she's not.
Al/Lohengrin's apples/orange" is a very potent image, and I believe, very true. And perhaps part of that message is that, though in theory it wold be good if your husband got exercise, physical therapy, socialized, etc. it's not going to happen at this stage of his illness. You can't make him, and if you can't, I suspect it's a whole lot less likely he'll do any of that in long-term care - though at least your kids would not be blaming you for not doing the impossible.
If he's sundowning at 3, possibly medication changes could help? I gather sundowning is very common, but maybe that's partly because of a build-up of medications in his system.
Perhaps- you're the best judge - there's a middle way. First, you have to stop blaming yourself, and REFUSE to accept your kids' blame, that you aren't doing the impossible. Maybe your kids could get you some help, a few hours a day, to help stave off long-term care? That help would be less expensive than long-term care, and knowing you could escape for a few house (after 3pm?) could be a life line.
And - this is hard - but you need to distance yourself. It's hard, and painful, to hear someone you love complain all day about their symptoms. And perhaps your husband has been controlling to you and your kids for a long time. You are entitled to live your life, to keep your sanity. That may require the wisdom of the Serenity prayer:
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
You can't change PD. You can, perhaps tweak medication schedule, which might help, but over the long-term, it'll still be tough. Depression is very common in PD, and is often undertreated. It sounds to me as though your husband could use an evaluation. You too, and I mean that in love.
You can accept that you can't make it work as well as you wish you could, as well as your kids, not being there, not being willing to do it themselves, want you to - but ultimately, you know better than they do what you can and can't do, what does and doesn't work. Sometimes, paradoxically, doing less is doing more. So, possibly, accept that at your husband's stage of PD, he's Lohengrin's "orange" who does not want social engagement, who does not want exercise, who wants to sit in his chair. And - accept that.
Gosh, I wish it were easier for you. You sound like such a good, loving, caring person.

By Reflection On 2012.01.03 00:33
another source that might help convince your adult children that the impact of PD can include social withdrawal:

By LOHENGR1N On 2012.01.03 19:16
In the original post What has me the most concerned about the advice is "Counselor is encouraging me to get an elder care lawyer, figure out a way to get him into long-term care, so he can no longer escape physical therapy, social engagement, etc." If and I realize it is a big if, He is suffering setbacks from being in hospital, infection, medication etc. Which might be able to be straightened out somewhat.
By getting a Lawyer involved and figuring a way to get him into long term care it will amount to a committal in the eyes of the law, to force him means he isn't capable of making sound, safe decisions for himself. This action might result in taking any say away from him about future care. This may put him in the hands of a court appointed proxy who might not know him or his views of end of life issues. The court could appoint a stranger and not Family as family couldn't convince him to long term care. I'm not trying to scare anyone I'm just pointing out things to think about before acting. Therapist as a rule don't live it, Doctors don't live it, Caregivers/Partners, Family and We Patients live it to more or lessor degrees. Once the Lawyer and Courts get involved it is much harder to un-involve them or get rulings reversed. Just another of the long list of things to think about with this damn disease. Take care, best of luck and hang in there.

By housemouse On 2012.01.06 21:48
I am so glad that I took the advice of my counselor, and got one of the elder care lawyers she recommended.

In three days, he updated our wills, helped to revise our medical care directive so I would be first, son second, daughter third, gave me power of attorney first, son second, etc.

And, he gave me the list to check off and take to the docs about what medical interventions we do NOT want done in the event of a major catastrophe.

He also got me in touch with a wonderful service for Veterans that will provide us more money when the time for assisted living/palliative care/hospice comes.

We now are in a much better legal place than we were just a week ago.

Just so everyone understands, my counselor is now encouraging me to respect my husband's expressed wishes, and not add to his anxiety by pushing him to do more than he feels able. I am still doing the caregiving, and will continue to do so until the end, but I was thinking more of my needs, not his, to push him beyond what he felt he could manage with the anxiety and flushing.

I downloaded a very helpful book for my kindle from Amazon, titled: Making the Connection Between Brain and Behavior, by Joseph Friedman.

I was surprised that chapter 16 mirrored our experience with this last hospital/rehab encounter. It was devastating for my husband, and the next time, I am going to think twice before going that route.

The hospital emergency room is the very worst place for a Parkinson's patient in a crisis. And being in the hospital and rehab isn't much better.

I recommend the book for those of you new to dealing with this illness.

By LOHENGR1N On 2012.01.06 23:18
housemouse, That's great! I'm glad you are in a "better" place now and things are going so well. It is a very hard disease to navigate and as You said in another post so different for each one of Us. Thanks for updating Us we all need every bit of good news that comes along! Again I'm glad for You and Your Husband and thanks for the tip on the book also! Now relax and catch your breath for a few My friend. Take care, best of luck and hang in there.

By parkinit On 2012.01.07 20:04
housemouse, I believe we are close to in the same place with our spouses. My spouse's organizational skills are out the window. He loves reflecting about his past (30+ years ago), but has very limited recall about recent events. He has been trying to get papers in order and he keeps getting frustrated because "someone keeps getting my papers all out of order." Sadly, that someone is him. He doesn't remember. He looks at me like he suspects I'm doing something to "his papers." I've tried explaining that I believe when he is "high" on his meds, he doesn't recall what he is doing and does "weird" things. We haven't had any major panic attacks, but I see us drifting closer to where you are in your PD walk.

Your advice is good and thanks for posting the information.

By DaughterofPD On 2012.02.01 01:30
Housemouse... I feel terrible that you are going through this. I am a daughter of a PD patient. We added on to my Dads house a couple years ago. Myself, my husband and four kids moved in. We did so to help my Dad whos health was getting worse. He has had PD for 17 years. He is now 78 years old.

I can completely relate to the way your are feeling. I'm not his spouse, but I am his daughter. Watching my Dad have these terrible struggles and lose control is very difficult. It saddens me to see him lose control of his body and mind. At the same time, I am very frustrated and angry. I am treated poorly by my father. He is very anry with me. Two weeks ago, we started having 24 hour caregivers in our home. I wasn't able to work at all in 2011 because I had to stay home and be there for my Dad so much. This year I've decided that I must go back to work and work on being a better wife and parent. I have spent the past year, asking my kids to wait until I'm done helping their Grandpa, missing my sons games and being extremely grumpy with my husband because I was exhausted. I have come to the conclusion that it's important that I am a good mother and wife. I need to be there for them and help out financially. We have struggled to pay our bills for too long. My Dad doesn't understand how I could go to work, when he needs me. He doesn't understand that I need to sleep at night and can't be up with him. It's heart breaking because I love him so much and know that he needs family and social interaction. I am still willing to provide him with that. I also take him to his doctor appointments, manage his medications and care for him 48 hours (2 days and nights) each week. Outside of that, I am putting my focus on my family and their needs. I wish there was a simple solution, but there isn't.

By housemouse On 2012.02.09 23:44
My beloved is now home from the rehab, and is steadily declining.

Most of the decline doesn't seem to be related to Parkinson's movement problems, but more from autonomic nervous system failure. He suffers constant anxiety, panic attacks, temperature problems, and debilitating nausea.

The neuro-psych has prescribed Clonapin for the flushing/anxiety/panic attacks, which are totally disabling, and meds fior the nausea.

But then DH complains that the Clonapin makes him feel foggy and slow.

I keep telling him that it is a trade-off, and there is no magic pill that will make him feel "normal", which is his heart's desire.

We can do nothing to slow down the progress of Parkinson's. There isn't much we can do to help our loved ones accept this loss of control over their bodies and the horrible symptoms they experience as their brain fails.

What we do need to do is to go on with our lives, understand their suffering, but not be devastated by it.

People struggling with a fatal disease like Parkinson's become very self-focused on their own pain and suffering.

While they desperately need to tell us about these awful symptoms, hoping that there is a magic pill out there that will be a rescue, returning them to a normal life, there really isn't much we can do to help, except to hug them, hear them, and say how sorry we are that they have to suffer so.

So, after re-assuring them that we know how much they are suffering, we need to go about taking care of ourselves and our families.

I know what you are struggling with, trying to meet everyone's needs, Dad's, Husband's, Kids'.

Dare I ask who is taking care of you?

We women work so hard to care for everyone else's needs, but there does come a time when we need to get our own selfish needs met, so we can keep on with our tasks of meeting the needs of those we love.

We do not do ourselves a service if we do not let our loved ones know that we have a breaking point/ limits.

I never was very good at letting my loved ones know, so most of them take me for granted, and don't offer not much back in the way of support. It is my own fault, actually, for not expecting support back, for support given.

We can give a lot, but we do need to be supported, refilled, appreciated, and most of all, respected.

God bless you, and take care of your self first, for if you do that, then you will be able to care for those you love.

By chroop67 On 2012.02.12 12:20
Wow your last post totally echoed my own feelings. My mother experiences all those symptoms on a daily basis, anxiety, hot flushes, panic attacks and lately, nausea. She always wants me to find a doctor that 'can figure it out'. I try to explain that it is the PD but she always says ' oh no not this, this is different'. She has dementia also so her ability to reason is gone.
Nothing brings her joy and believe me I try but she is completely focused on what she can't do.

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