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Topic At my wits end - how to find a therapist who can really understand PD Caregiving? Go to previous topic Go to next topic Go to higher level

By dkleinert On 2011.08.07 23:32
Came to the forum tonight at my wits end - I have hit a wall. Just read a lot of your posts.....been away for a long time - just no energy left for the PC after working 9+ hrs a day, then caregiving the rest of the house from sun up until late night like this....

I just don't feel like I can do this any longer....... I feel the worst I have ever felt in my life. I used to be an optimistic person. Not anymore. My PD husband was diagnosed 7 years ago. Our marriage was not good before the diagnosis 'cause we didn't know what was wrong with him, but his behaviors were ending our marriage - writing bad checks, draining our bank accounts, lieing to me about everything he could think of, not helping with anything, he had a rageful temper and was verbally abusive, on and on and on...then we found out he had PD and I felt trapped that I could not leave him.....still feel trapped.

He is obsessed with online games, ipod games, Nintendo DS games, Suduko books, on and on......but expects that I take care of everything while he plays, doesn't care if he ever showers or shaves, smells to high heaven (he can't smell anything), hasn't driven in 5 years so I get to do everything, won't help with any chores (he is still mobile and has a PT who comes 3 times a week), is the most self-centered person I could ever imagine knowing.....he urinates all over everything in his bathroom and won't clean it up - won't use a urinal or wear depends - he has accidents and continues to wear the wet underwear and pants.....

I feel so used lonely....feel like I have squandered the best years of my life (I am 63 now), and don't see any change and only things getting worse in the future.

How did you find a therapist? How do you find one that specializes in caregiving? I think that kind of therapist would be the only kind who could understand....

I understand about wanting to wake up dead....I feel the same way.

I miss sex, I miss intimacy with a man - even just touching, feeling close, I miss having FUN - laughing! I miss having things to look forward to, I miss feeling like I matter to someone, I miss feeling like I am attractive to someone, I miss being a partner with a man who I can share responsibilities and activities with, I miss being cherished and loved.......I just don't know how to keep going......

I know so many of you feel the same way.....

Thanks for letting me vent.......I am really at the end of my rope.....

By karolinakitty On 2011.08.08 08:14
Donna...glad to see you back, but, so sorry you are having such a hard time. I know how upbeat you have been but i also know we all have our limits....

About your therapist....maybe ask your husbands neuro or movement doc about one, perhaps your husbands PT may even know one that specializes in caregiving.

I know you are extremely caught up in everything, but google: therapist+caregiving in you area of NC, (if i remember right your are there) if that heeds nothing try psychologist+caregiving and see what comes up.
have you looked into daycare for him or perhaps a caregiver to help a little while you are not there?
we all know those are A-typical things he is doing....also i have read recently about certain senior agencies that have a "maid" service. They have volunteers who go clean houses/apartments once a month to give caregivers a break. They don't do spring cleaning type cleaning, but they vacuum, dust...there are some that have grass cutting and such..perhaps even a local church can help you out in that way....just to give you a break once and a while.....

You are still in my prayers... please take care.......

By dkleinert On 2011.08.08 09:43
karolinakitty - thank you so much for responding and are correct - great memory - I do live near you in North Carolina. I truly feel like I can't go on.....

I after work tonight I will do some searching on the internet for a therapist in our area as you recommend. I am also going to contact someone to help with the, as you say, I don't expect spring cleaning or deep cleaning, but help would be so appreciated.

On top of all of this stress, I committed to Joe about a year ago that I would do all possible to sell our property and move to home to Texas. Since that time he has had one health challenge after another, then his 91 year old mother in Texas was seriously ill and we had to be there to help, then in July she passed away......I feel under the gun every day to continue with getting the house and our acreage ready to sell. The only reason I continue to focus on moving home to Texas is that I will have help there. Joe's aunt has told me repeatedly that she would help me, and there are others in the family there also. Here, I don't have any help at all. Our son lives about 45 minutes away, but he has 4 children under 5, and he and his wife just don't have the time to do anything for us. We don't see them very often either which is painful for me. I am missing the growing up years with my grandchildren....

Anyway - thanks soooooo much. Thanks for caring. Let me hear from you - send an email?

By jockdoc On 2011.08.08 13:41
Dear dkleinert, My heart goes out to you. I've not heard of a tougher "road" than you are facing. All those hours working then Caregiving. Do you have family close by you that might help you? Something you need is respite no matter what.
My advice would be to contact your church, American Legion, Service Clubs, call some of your husbands buddies. Family would be best, but I know "first hand" that's not easy; them having their own families to care for every day. As an excaregiver I feel so helpless trying to think of something that would help. I will be praying daily for you. I hope that others will pray also. Jock Doc

By dkleinert On 2011.08.09 10:26
jockdoc - THANK YOU sooo much for your response. As I mentioned in the 2nd post (above) I made, my son, his wife and family are the only family here, and they just don't have the time to give me. My only days off from work I have each week are Tues and Wed, and they are never free on either of those days as they both work and can't help me. We used to attend church, but since I have been forced to work weekends for the last 5 years since my PD husband has not been able to work, we have not attended in all those years. Our deacon offered to help a couple of times, but he lost interest when he saw all that could be done to help us. I am getting used to people falling away from us.....our life is depressing for me and overwhelming for others - I understand that.....

We had some relief from our county services for awhile with a person who came to the house 4 hours a day 3 times a week, but then we were robbed one night while I was away at work - the robbers took so many of our things..... (the robbers trapped my husband in his bedroom so he could not get out - he was asleep when they came in), and the sheriff thinks the robbers were linked to the person the county agency sent out here, so we stopped that assistance - now I am afraid to trust anyone to come to our home for that kind of aid.....

Thanks soooo much for your prayers - they are the most powerful arsenal we have.

By WellShoneMoon On 2011.08.09 12:17
This is a message board where we can let it all hang out, so here goes. Quite frankly, I think that you could better use a consultation with a lawyer, rather than (or maybe in addition to) a therapist. I can't see any reason for you to stay in your situation. You have a marriage that was in trouble even before your husband's diagnosis, and now you're feeling stuck in an absolutely impossible situation.

So, acknowledging that I don't know all of your circumstances, I'll tell you what I'd consider doing if I were in your shoes. I'd see a lawyer and find out my legal options, and then I'd tell my spouse, "Look, you have no apparent interest in continuing this relationship because you refuse to take any responsibility for anything. If we're to continue to be together, here is a list of my requirements." And I'd hand him a written list of the things I expect him to do. If he refuses, I'd be out the door, just to protect my own physical and mental health.

There, I said it and I'm glad.

By karolinakitty On 2011.08.09 21:36 really put it out there...apparently you aren't a caregiver, especially of one with PD or you wouldn't have said what you did...

By WellShoneMoon On 2011.08.10 08:21
Not true. I am the full-time caregiver of my wonderful husband with PD. The difference between my situation and that of the OP is that my husband makes a great effort to make my job as easy as possible, whereas OP's husband apparently refuses to do anything at all. I believe there's a difference between being unable to do something and refusing to do it. It's the latter that I would not be able to tolerate.

By packerman On 2011.08.10 09:57
just long has your hubby had PD and how is he doing?

By WellShoneMoon On 2011.08.10 15:02
I'm not sure how long he has had PD, but he's been wheelchair-bound for the past two years, can't walk at all. We used to travel a great deal, we used to go out dancing, but now we pretty much just stay home and watch Netflix. I give him his daily shower, I do all the cooking (he used to love to cook) and housework, I manage the many medications. I put the condom catheters on him at night because he can't get up to urinate during the night and he can't manage a urinal without spilling, and in the morning I empty and clean the drainage bag. Cognitively he's slowed down a great deal, and this is a man with a Ph.D. who used to be a professor, so it's sad to see how much he's changed.

In spite of his limitations and difficulties, his spirits are good and he says he's a lucky man. We are a team in dealing with his PD; we try to treat each other with kindness, love, and respect. Every one of his requests is prefaced with "Please" and followed with "Thank you." When he has a bathroom accident he apologizes and helps me clean it up, or tries to help at least. Every day he tells me how grateful he is to have me. (We've been married for 23 years, although we married later in life, so we're not young kids.)

But back to the reason for this thread. I know my response to OP comes as hard talk to some. But I responded to the words of her original post: "had a rageful temper ... was verbally abusive ... I felt trapped that I could not leave him.....still feel trapped." "He expects that I take care of everything while he plays, doesn't care if he ever showers or shaves, smells to high heaven (he can't smell anything), hasn't driven in 5 years so I get to do everything, won't help with any chores (he is still mobile and has a PT who comes 3 times a week), is the most self-centered person I could ever imagine knowing.....he urinates all over everything in his bathroom and won't clean it up - won't use a urinal or wear depends - he has accidents and continues to wear the wet underwear and pants....."

That to me verges on an abusive relationship. I wanted OP to know that she doesn't have to sacrifice her health and her sanity for this person. I'm sorry if that offends some people.

By caregivermary On 2011.08.10 15:08

I wasn't offended by your post at all. I thought you had it right on. Keep sharing with us. Thanks

By plcpainter On 2011.08.10 19:29
Dear WSM -- I was writing an almost identical message to OP when yours came up on the screen! Your husband sounds very similar to mine though my fellow is still navigating (slowly & carefully) on his own. He wakes me up several times a night for help or comfort. Now, I do NOT awake gracefully -- never have, never will. Just who I am. Even as a child I awoke sooner than the entire household so I had my 30 minutes to adjust to the day! So when he would wake me up by saying loudly & stridently, "Help me get out of bed!", it would really evoke a seething anger in me! I learned to bite my tongue but the anger and resentment remained. Finally, on a lovely day when we'd had a good go of the morning, I told him that I needed his help. I reminded him of my poor wake up skills and told him of my resentment with his tone. I also said that I knew that wasn't what he meant to sound like as that is NOT the sort of person he is! Then I asked him to please waken me gently by calling my name and asking for help instead of demanding help. And adding a please if he thought of it too! :) This has done wonders and he's been (mostly) able to remember my request. I write this to say that PD does not allow us to forget our manners! I think the anxiety and fears make the person become more demanding though. That is why it is essential to keep communicating what we both need -- patient and caregiver -- to go on in a healthy fashion. If the relationship becomes too poisonous, and communication is ignored or irrevocably broken, then one must keep themselves safe, both physically and emotionally. This is true whether one of the partners has PD or not. JMO.

By karolinakitty On 2011.08.10 21:58
I wasn't offended....i just thought a little strong not knowing what dk or her husband have been through...maybe i know more about the situation than you, as we have communicated off the board ....maybe just a little too close to the situation.....

My guy also does as much as he can, says please and thank you...wakes me up,with vivid dreams with acting out, says even what a blessing i am to him....wouldn't leave him...even if his dementia turns to the ugly side.....and
I don't think there is any woman on this board who hasn't dealt with the bathroom issues....

By Michele On 2011.08.11 16:00
Hello DK, you truly are in a tough situation. I'm glad you are looking here for help and support.
A talk with a lawyer isn't a bad idea. Just something to think about.
but to get back to your original inquiry - how to find a therapist who knows and understands the struggle of caregiving. I would suggest a Licensed Clinical Social Worker (LCSW) or a Licensed Professional Counselor (LPC). Incidentally I am an LCSW. A place to start would be your primary doctor or any doctor you trust, for a referral. Another source is a Visiting Nurses agency. The VNA's in my area (South Jersey) have counsellors as part of their staff for all situations. Even if they don't, they be able to give you a referral. Also, try the Elder Care Agency in your area. You are not in the "elder" category but that agency would be familiar with caregiving.
I hope you are able to find what you need. I don't know how you are holding up. You are an incredible, strong woman.

By parkinit On 2011.08.13 18:27
Two things: PD, according to my doctor, enhances traits already evident in a person. If a person is hateful and abusive, he very well could become more so. I agree with others to seek the counsel of a lawyer.

The second matter. You can hire assistance. I had someone coming in once every two weeks to clean the house. My husband fell once while the cleaners were here and they didn't even go check on him. So, they are no longer our cleaners. I found an agency in town who provided a "companion" service. She does light housecleaning AND watches my spouse for less than the cleaning service. She tidies up, vacuums, dusts, does laundry, and sits down to play dominoes with him from time to time as he needs the companionship and attention.

Okay, I'm sliding in a third item here. Seek a home health nurse - you can request this through your neurologist and medicare (while we still have it) will pay (if you are old enough). They can help evaluate your spouse and keep tabs on and make suggestions to both of you. It may be good for both of you to have an objective person in the picture on a regular basis.

By dkleinert On 2011.08.20 01:30
Thank you to all who have so kindly written their honest opinions. The days and nights (it is 1:5am) are so crowded with one emergency or another, one doctor visit or another.....hardly any time to read here - but oh, how much I need to read here.

Thank you for your caring remarks. I feel abused, and being able to identify it as abuse has been difficult for me. I am always trying to find a way to do SOMETHING, ANYTHING, that will help the situation, hoping it will change never does.

I fear there is a PD dementia at work also, but don't know how to draw the line and say the behaviors are from that.....because his mind is with it enough to beat our daughter on a regular basis, who lives in another state, on internet scrabble. Our daughter is an English major in college and an avid reader and school teacher, and one of the compulsive games he plays every day is internet Scrabble with her. He evens has multiple games running at the same time and his main conversation points are how much he is beating her or why in heavens name didn't she play her turn in the last hour or 8 hours or whatever is annoying him. He is so obsessed with winning. He plays Sudoko all the time and even the Mensa why can he do those things so well, and can't or won't help me with anything, can't seem to remember much of anything else, won't shower or save or brush his teeth unless I insist on a regular basis (he gets annoyed with me when I make him go and do it or I help him do it) - I just don't know what to think. A lawyer.....wish I had the money to pay one for even an hour - I just don't. If I did leave him - what would he do or where would he go? He can't drive or take care of, that is why I feel so trapped. Tonight I was so fed up to after work I left the house and drove and drove. Came home and again looked up counselors in this area, but no matter how I search on Google, I can't find any in my immediate (within 20 miles) area who specialize in Caregiver Counseling. I just don't think unless someone knows a lot about Parkinson's that they could counsel me well. I will check a couple of other areas for a therapist...maybe....

Thanks for all of you being there for me and for your love and support - it means the world to me.....I just don't know what I'd do without all of you to come to.....but I feel as though I am at the end and I can't continue this way either...

Those of you who can refer to your PD spouse as "loving" and "wonderful" are soooooo blessed. What you have in that person - PD or not - is such a wonderful blessing to be cherished - a gift.

For those of you who do not know me, I am normally an optimistic, energetic, problem-solving, up for any challenge, caring, loving, unafraid of hard work, committed, glass is half full type of person. I just feel like all of those normal traits have been drained out of me now..............

By Pearly4 On 2011.08.20 08:58
I recognize some of your behaviors from my own past. Your driving around -- an attempt at escape. I used to compare myself to a backyard dog on a chain - I'd drive until the chain ran out and get jerked back into the harsh reality! Bottom line - you describe abuse, you describe depression, you describe a miserable life, but you seem to be limiting your options yourself - perhaps out of fear? If you were bleeding from your left foot, would you wait until you found a left foot specialist to see a doctor?! I think not - granted a therapist experienced in Parkinson's and caregiver issues would be nice, maybe, but you need some clear thinking at this point and any therapist should be capable of giving you that! And by the way, I saw a therapist who had gone through caregiving issues with his own mother and now "specialized" in that type of patient. Not a good result! I felt sometimes as if I were the one doing the therapy!

If you haven't talked with your own doctor, talk to your husband's about the issues, or at least some of them. If not for his medical input to your husband's problems, perhaps for medication for yourself. It won't "fix" anything, but if your head is more clear, maybe you can see more possibilities and won't feel as stuck as you do now.

By karolinakitty On 2011.08.20 13:59
DK..just on other note here about drawing the line on dementia.
Dementia and Intelligence are 2 separate issues. I don't know if you remember a "rant" i did several years ago, about the testing they did on my guy. The testing was to be for "memory" but turned out to be intelligence. It was to be a determining factor in his disability. Needless to say, him being a member of MENSA, he passed, however at a slightly post high school level. Intelligence and factual recall are not so much a part of dementia, in the beginning, as is short term memory loss, personality changes and so on. Intelligence will come and go. I remember a few years ago, the comment being .... her husband was a surgeon and he would stand naked in the living room and give a lecture on a certain surgery, and give it down to every FACT being correct, yet he was in full blown dementia. You just don't know for sure, should we give in? That is the fine line we walk in this walk...

By caregivermary On 2011.08.20 17:26
I found this document recently and I found it most interesting.

from the site

Parkinson's Disease Mind, Mood, and Memory

By Michele On 2011.08.20 19:06
Hi DK, Michele again. Since you can't find a therapist in your area who specializes in cargiving, PLEASE consider seeing a good therapist recommended by someone you trust. Being a therapist, I know that s/he doesn't have to know what it's like being a caregiver to give you valuable help. You need support right now, emotional and decision making support. A good therapist can help you with that. S/he can help you sort out your situation so that you can have the strength and the confidence you need to make the decisions you have to make. If you can't get a recommendation and have to rely on internet listings, please know that you can "interview" a therapist on your first visit. If you feel listened to, hopeful and trust him/her, then you found a good therapist. If not, try another therapist. Also, if money is an issue, some community health services have a sliding scale for their fees. These therapist are no less competent, sometimes more, than private practicioners. Please feel free to email me if you have any questions or concerns -

By dkleinert On 2011.08.23 00:45
How I love this forum - I can't thank all of you enough for your post:
CaregiverMary: I read the entire booklet on your link - it really did help - I kept it on my computer. There is a poem in the last section on Caregiving and it goes like this:
Thoughts by Phyllis, caregiver in Philadelphia, Pennsylvania
Where am I?
Where did I go?
What happened to me?
I am a Caregiver
Thatís who and what I am
Non-stop 24-7
A Caregiver
Get my meds
I need a drink
Whatís for lunch?
I had an accident
Oh well, more laundry, then when the kids were toddlersÖ
What time is dinner?
You just finished lunch
Where is me Ė lost for now
I am a Caregiver
Lunch with Jeanne Ė not today
Canít go anywhere
The collar & the rope are fastened to my very being
I feel the noose around my neck
Yes, I am a caregiver
What did I do to deserve this constant pressure & responsibility?
What did he do to deserve Parkinsonís Disease???
My children & grandchildren are the oxygen that allow my soul to breath and go on
But, is it the Parkinsonís?
Lash out, lash out
One bash to the head
Youíre stupid & donít understand
You have no compassion
You need classes to learn
My mouth is silent
His is raging
On & on and on
You donít listen
You donít understand
No, I donít understand
Life isnít fair
Nastiness is spewing out of your mouth
Like an erupting volcano
Another bash to the other side of the head
My very being is in pain
Where is your compassion?
I give my all and then give more
Another sleepless night
The exhaustion is physical
The mental tired is most draining
Another blow to the head
The tone of voice & words are so hurtful
Itís not fair
I realize now it doesnít have to be

Boy did that hit home with me - the entire thing. I am going to repost it in a new link for others to read. Thank you sooo much for sending that to me!

I do remember that story about the surgeon - wasn't that from Ann? Anyway - that made me think - you are right - even though my PD spouse is highly intelligent and he can access that part of his brain - the rest is just not consistently accessible. Things just seem to be going downhill for him cognitively, and as in the article I read from the link Caregivermary listed, that is the most difficult part to deal with - much more than the physical symptoms. It was reassuring to read that from a medical point of view also.

Michele: I FOUND A THERAPIST - I hope. I called my husband's insurance and asked if they could recommend someone for me (I am allowed 8 free visits a year). They sent me a really long list. I started calling and leaving messages, telling the therapist what my needs were and saying they should not call back if what I need is not their specialty. One of the therapists actually answered her phone. She asked me what I needed and I told her I was my PD husband's sole caregiver and needed new coping skills. She flew into action on the phone. She has worked extensively with Hospice and has taken care of her elderly Mother and worked specifically with caregivers!!!! I see her next Monday morning. God answered my need and your prayers! Unless she turns out to be someone other than who she said on the phone - she will be perfect. She said she would be giving me a list of service providers that are free and she knew how to get in touch with them so I can access assistance here at home for my PD spouse and for me. It was an amazing conversation. I am hopeful and thankful just for the boost it has given me.

Again - I love all of you! THANK YOU SO MUCH for being there for me.

By caregivermary On 2011.08.23 13:17
I am so happy to read your current post. It is truly uplifting to hear in your words that you have been helped by the participants on this forum.

I wish you peace and comfort from the help you are actively pursuing.

By theresa2wyoming On 2011.09.01 09:37
I think PD drains me more than my husband. I understand the way they seem to be in their own little world. He lives with his computer or iPod as his constant companions. He complains that I don't spend time with him, but when I do, he pays more attention to the iPod than to me!
I love my hubby dearly, and I'm thankful he is still with me. After five hospitalizations in the last 15 months, I feel very fortunate. We deal with heart disease, stroke, diabetes, gastroparisus, and other conditions on top of the PD, yet the PD is the most depressing.
I too feel like it's time to look for a therapist for me. I live in a pretty rural area, though, so I'll have to settle on whoever I get. I'm normally very upbeat and positive, so it is strange to be dealing with depression.

By packerman On 2011.09.01 11:39
if you live too far out in the country, could you find one who might Skype with you as the appointment instead of travelling a long distance?

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