Posted 06 June 2013 - 09:24 AM
I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.
Posted 06 June 2013 - 02:37 PM
Twenty years ago I was having emotional problems.I found Recovery inc. to help me and have stayed with it since.What was said here sounds like alot of temper(fear and anger).In Recovery Inc. we learn to identify and stay away from temper as it is very toxic to our nervous system and relationships.We will never be free of temper but we can get rid of our temper habits.My favorite ones where procrastiation,and most importanly avoiding things I feared and hated to do.
Angry temper is easily recognized with outerenviroment.people won't do what we want is a example.Fearful temper is against ourseles. fear of making mistakes or self distrust
Ive had Parkinson for about three years now and it is a challenge.I do mornings that I awaken and are irratable.Centra sleep apnea relating to parknison is probably the culprit.
I havn't had much of a problem with my nerves since Parkinson came.I do stay away from temper,wish my family did also.Domestic temper is very common today,unfortualy it also is often ignored and causes alot of suffering.Why society won't deal with it is beyond me.
There is a good book from Dr. Abraham Low,peace over Power in the family.While this deals basicily with temper it has saved my marriage many times.It gives you enormous insight into "domestic temper"
We can't get rid of this disease yet but we can learn to live with it calmly.
Posted 08 December 2013 - 03:15 PM
Coach, if she refuses, the only thing you can do is get support for yourself. My husband has adamantly refused to deal with his unwillingness to touch me, care for me, share with me, learn about PD and face his fears about it. Now I live in an adult family home and choose not to see him because it is too stressful. I've had lots of support incoming to this decision. You can lead a horse to water...Now is the time to make decisions based on what is best for you.
i know this is an old topic/post but had to say something. I feel so bad that your husband has done (or lack of doing) all those things. I know like others here, just how hard PD is to live with. My tremors are to the point now that if i'm sitting on the couch my wife will sit on the floor so she can be more comfortable. It's a mental game with me cause i prefer to sit with my wife. It seems like our intamacy is fading slowly. Anyway, my point is that I understand and am here as a friend for you.
Posted 10 January 2014 - 11:07 PM
I know it's been awhile since people have written on this topic, but it really applies to me. My PWP was diagnosed in 2006 but probably had symptoms since 2000. In addition, he is an undiagnosed OCD (obsessive compulsive disorder), not severe to be life sucking, but enough to be annoying. Oh, did I say that he's 18 years older than I am? So some of his demands have the effect of triggering some of my old "father" issues. The outbursts of temper, swearing, throwing things, slamming doors, dropping pans -- all that just sets me off because my dad did those things, and they usually made me feel responsible for something wrong I had done. So my PWP/husband, when he's open and empathetic, knows he does these things and it twists my insides and I shrink back in the corner. But when he's frustrated, tired, or his meds aren't working, he doesn't remember these things.
For several years he has coped with the disease very well, essentially staying on top of his exercise and meds. His OCD came in handy then -- it kept him on track. I essentially wasn't his caregiver because he didn't need one. But since August or September of 2013 he has gone downhill fast. But you see, his doctor and staff believe he's still the positive-thinking, high-functioning PD he has been since he started there. And when he goes to the doctor he overcompensates somehow so they don't get the real picture. He always behaves better there than at home. I guess that's typical.
Anyway, and sorry to be so long, I haven't been able to help him much over the last few years as I had several things wrong with my spine, and I have fibromyalgia. My PWP was more my caregiver than the other way around. I finally had back surgery last October, and it has helped me very much. So the timing has worked out that since my surgery, he has needed more and more care. Since I couldn't do it, we have a health aide who comes here every weekday morning from 6-8. Just last week PWP asked if she could come also in the afternoon. So she's begun to come from 2:30 to 5:30 in the afternoons. The result is that he has someone to talk to, and he has the aide's full-time attention -- something I can't do because of all the other things I have to do. So I'm glad we tried this. He does seem to be doing better.
I feel thankful every day that we have the resources to provide this outside care for him. The aide is pretty special, too.
Our neighbors have been such a good help to us, as well as some of our friends. We are blessed. Doesn't make me feel any better about the direction we are going, but they help out when I can't cope at that moment. I'm new to this forum. Hope it helps me. The local Carer support group has some people in it who dominate the sessions, so I don't get too much help there. Hope I can help you.
Posted 10 January 2014 - 11:42 PM
Welcome, Preacherlady. An quick update on me. I am now living independently with 120 hours of caregiving/month. It takes 99% of my money to just get by, but I am in charge of my care. Just after I wrote that post in May I had an episode of depression and while I was in the hospital my husband left the state without telling me where he was for months. We are now divorced and the funds that are 50% of our assets will be set up in a safe trust administered by my sister, which will give me a little financial breathing room. My husband finally admitted that he began to distance himself from me about two years before my diagnosis when he got a Yorkie pup very similar to the one that was his only consolation in his previous marriage. Once I found it really was about him and not about me, I could move forward and let go.
Nothing except looking forward can heal the pain of those three years when he wouldn't touch me, talk to me, or care for me. That, and going back to the wounds of childhood and healing them by accepting that what my parents, grandfathers and uncles did to me said more about them than it did about me. If your spouse reminds you of your dad, you might have some unfinished business from childhood that you could deal with in therapy. We often grow up and marry one parent and become the other.
I sincerely hope you find the support you need. You are always lovable no matter how your spouse acts (or anyone else for that matter).
I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.
Posted 11 January 2014 - 09:38 AM
Beau's Mom, Thanks for your kind and wise words.I really appreciate them. I have the support of several friends, and the people in my church. Also our neighbors are a great help in helping with some of our needs.
Posted 24 May 2014 - 11:20 AM
Wow! If I didn't know better, I would have been certain that you were talking about my husband. I often think of him as a four-year old. He is demanding and self-righteous. He thinks he is always right. He is constantly "organizing" which is total disorganization! He can't write a check or balance the checkbook but has a masters degree in accounting. He constantly misplaces things and demands that I immediately begin a search. He constantly makes messes with food and papers but seems not to even notice. We have a caregiver from 9-5 Mon-Fri and he gives her a fit. I have lost my tall, strong, intelligent, loving husband. I now have a big child who requires constant supervision. When my husband was diagnosed, I realized the physical changes that were to come but had no idea of the mental changes. The cognitive impairment is a nightmare for me. I am so isolated by this disease that I have no friends. I am so frustrated and tired. I miss our life - my life.
Posted 25 May 2014 - 01:56 AM
Yes, and the term for all that endless paper shuffling and 'organization' is punding. You have my sympathies.
Posted 12 June 2014 - 03:42 AM
This list and thread helped me SO MUCH. I am new here but wow, the list and comments really hit home. It is so emotionally frustrating. I feel like I am hitting my head against a wall sometimes. Then I start to question my own sanity in trying to have a healthy, sane relationship when maybe he just is not capable of that sometimes (and more and more often lately). I feel like I am just watching the disease take him away from me, and it makes me feel so sad and angry to watch someone who I believed once loved me turn into such a nasty selfish person who cannot see past the end of their nose (other than to point out my flaws).
It feels like I am trying to reason with a drunk, which I do have experience with. I don't drink and neither does he, but he acts like he is intoxicated sometimes and It also pushes some big buttons in me from my childood. Back then I had a special person in my life who was an alcoholic and the most wonderful person when sober and then would say things in a blackout that I am sure he would have never been able to handle if he remembered. So I feel the hurt even deeper for that reason. However, I also feel like I am the crazy one when I keep trying to get him to understand, especially if it relates to how I feel.
Anyway, thank you!!
Posted 27 June 2014 - 03:04 AM
So know when you post it is a positive thing...your experiences teach..and may prevent pain for others.
God bless the care givers!
Posted 29 June 2014 - 06:07 PM
Wow, thanks for all of your stories. I've been really pleased how well I've handled the transition from having a "normal" life to being a caregiver to someone with Early On-Set Parkinson's. I've just felt that you do the best with what you've got. My husband was doing his absolute best, and he certainly has it worse than me. But, I've been struggling SO much lately with myself, and your posts above help me understand it. My husband is 52 and has been retired since 47 due to his PD symptoms. Doctors think he's had PD since his early 30's but he hid his tremor as he was the breadwinner for me and our three kids. We'll be married for thirty years next month. He doesn't drive anymore, has pretty severe tremors, lots of short term memory loss including getting lost in familiar environments and personality issues. Yes, some were definitely present before PD, but the negative personality traits are hyper-exaggerated now! The empathy conversations above are what helped me the most. He is so empathetic to everyone - strangers especially, but seems SO hard on me for any mistakes that I make. I find this especially hard to accept. He got turned down for DBS last year, his memory is already too affected to be a candidate for it.
He's pretty understanding of the problems that he has with Parkinson's. We speak freely with his Neurologist, but he takes down notes without commenting on how to solve individual behavior issues. Open, friendly Doctor, but definitely not his department. We went to marriage counseling last year with poor results. Husband felt doctor sided with me (I think he did too and LOVED it) and husband felt ganged up on. My husband has had many positive improvement since being dianosed. Found religion, gave up meat, eats healthy, exercises and doesn't swear. His kinder, gentler side is very nice.
My current problem in a nutshell: He gets fixated on a certain topic. For example, he wants to buy a chair for our new apartment...he'll look on the Internet for days and days and show me fifty chair styles. I'll comment on them and then move on. We'll talk A LOT about chairs for a few days and he'll either buy one or decide to move on to another topic. Then, he'll pick a new "item" to research. We will discuss it for days, he'll show me a bunch of photos and discuss the pros and cons of the item. He'll either buy it or move on to another item. Repeat...repeat.... If I'm looking at something on the Internet, unless it involves a big purchase or something I know he'd be interested in, I keep it to myself. I know he's not interested. OR he'll ask to go to a certain store. I'll tell him that we went to the store two days ago, and did he need something else from there? He'll say he wants to look at (fill in the blank). I'll tell him that's why we went two days ago. He says we didn't go. We go again and have the exact same conversation that we had two days ago. Word for word. But, he doesn't know this. If I tell him, he doesn't really belive me. Going to the grocery store is now something I have to prepare myself for. We must have had words five different times last night. He wants to look at the exact same products, read the labels, make the exact same comments about the same things, and wants me to be right next to him the whole time to have this same Groundhog Day conversation! I walked away to look at something else while he was reading me a yogurt label last night and he tried to tell me how rude I was. His point - he's only looking at this kind of yogurt because it's what I like! I just don't know what to do. I've tried just to be my most polite, but I not able to always pretend I'm interested when I'm not (for the fifth time). I feel so rude and disappointed with myself for not trying harder. He's social with other people when he sees them but it's me and him 99% of the time. I don't know where to get a dose of the additional empathy I'll need to continue this journey. Love him with all of my heart, but I'm sad and tired. Mostly really, really sad that our lives are this way now. He'd be heart broken to know I feel this way.
Posted 29 June 2014 - 11:22 PM
First off welcome PWP wife, you are not alone in your feelings, they are normal, and caregiving is exhausting, the mental and emotional toll it takes on us is huge. None of us are perfect, it would be wonderful if we were, but we're not. I've said many times that there are days I survive minute by minute because that is all I can do. The journey doesn't get easier, but I have found out that I am way stronger than I ever thought I could be. Doesn't mean I don't throw myself pity parties for a future dreamed that never was, because I do. I just don't stay there, because there are days that are good that I cherish and enjoy because I know they won't last. I don't know if you have help or not, but now seems like a good time for you to start getting your support system in place, people to help with all the things that need doing, people to look after him so you can get away. You can always come on this forum to vent, and I am sure others will be here to let you know you are not alone.
Hugs to you and you're in my prayers!
Posted 30 June 2014 - 01:35 AM
You have my total sympathy You are In a daily situation that has little relief. It is aggravating and so it is natural if you want to pull your hair out. Don't be disappointed in yourself; be proud instead that you are still there. And Please don't feel guilty if you lose it with a sharp come back. We are all only human! and honestly your dh is very challenging. I think the thing you need the most is to go to the grocery store and other errands by yourself. Adult daycare? a friend to sit? a church member? But you have got to get some alone time or you will pop!
I so know that you miss your old life. Cognitive is the harder, IMO. My dh has loss both physically and cognitively but his physical condition is by far the worst. So I feel lucky when I read what is expressed here about dealing with the mental issues. Caregivers tend to isolate themselves until we turn our friends away. I know I did. You may not want to get out but please come here more often. In reading these life stories you will see that you are not alone.
Edited by elle, 30 June 2014 - 10:42 PM.
Posted 30 June 2014 - 04:50 AM
Thank you to all of you for your posts on this topic, I feel so much empathy for all of you, and it is ok to acknowledge that it is really, really hard living with a PWP - we are 10 years into the never ending journey. When my husbands behavior went surreal starting three years ago I had a complete breakdown due to the absolutely and total change in reality with which I was confronted. We had been planning to have a property overseas and retire and travel and enjoy life - and he suddenly switched to hating to eat out, calling staying a visit to his adult daughters 'a holiday', focusing on one obsession at a time, has been hypersexual, and then (this year) told me I was having an affair.
His adult children (we are a second marriage) do not believe anything I say about his behavior and it is clear from their body language they think I am lying (and 2 of them were like daughters to me for 17 years). In the 1% of his time that he is with other people he is charming. I feel like I am waiting for other people to see the behavior in order to be believed. If someone else does see it, he stops it totally - earlier this year a friend saw him hit my young dog and he has not done it again, in fact he has carefully worked on making sure that he is now bonded with her (the dog).
I have found our neurologist to be totally devoid of understanding anything related to mental changes -my husband has OCD and several other mental issues, and the neurologist has made it clear he does not want to talk about it. PD caring has become an hour by hour ordeal, as my husband is constantly confronting me new challenges all the time, or constant repetitions of old ones.
I am now studying to be a counselor with the objective of in some way doing what I can to assist other carers who are confronted with realities for which life did not prepare them. I now focus on my own self-care in many different ways, and this has enabled me to find myself to start my healing journey and find my positive consciousness again. My thoughts and heart are deeply connected to all who have posted on this topic.
Posted 30 June 2014 - 08:39 AM
I am the one that started this thread. So much of what is going on now is side effects of the medications. I thought my DW would
be in a nursing home by now the way she was on the agonists. If your husband is on agonists then I would look at having them
changed if possible. It was a night and day difference the day she went off. Now there are issues with anticholinergics, she is on Artane and another one the family practice doctor started her on. She is being slowly weaned off of it since I was ready to move out due to her behavior. We are going Wednesday to see about DBS again. This time I am all for it. Dystonia is her biggest problem and it is just getting worse.
I know about the isolation, I never invite people over since the house is such a mess and she can't really put together a meal
very well. It will be really bad when all the kids are in college in a few years. All four are home for the summer and it is chaos.
Hang in there.
Posted 30 June 2014 - 01:02 PM
Thanks so much for the warm welcome. I know it's been said before, but I didn't feel like I had anyone to talk to. I talk to my adult daughter who has Psychology degree, but I know it's not fair to her. The funny part is that I do get out...several times per week to exercise and a weekly Al-Anon meeting. I love it. I was out Friday night having a blast at a climbing competition. Had so much fun, came home SO happy! Saturday morning - I'm back to my grouchier self. As soon as the behavior started from my PWP, I'm back to square one. My PWP loves to talk to me. If I'm in the bathroom, he'll knock on the door to tell me something. He went for a walk the other day. I was happy to have a moment of silence. He called me. Then he called me again. Then he called me a third time. In fifteen minutes. By the third call, he wanted to know what was wrong. I realize that he's probably calling because he's getting a little nervous about his surroundings and he needs to check in. But, it still gets to me. I do get to do my grocery shopping and errands by myself. It doesn't matter if we've got a full stock of groceries. If he's been homebound for a bit, he likes to go out and go to the local stores.
Thanks SO much for being here. I've been typing for fifteen minutes now. I deleted almost everything I typed, but it really helped to put it out there!
Posted 23 July 2014 - 12:47 PM
This is my first time writing on any forum. My husband was diagnosed with PD 7 years ago and retired from work about one year ago. About a month after he retired he left to take care of my parents and met a much younger woman. He then told me he wanted out of the marriage but has come back several times but then leaves again. I kept saying I thought a lot of the behavior was due to the PD but I never felt anyone believed me. Reading the posts on this forum really helped me confirm these thoughts and will help me let go of the feelings there was something wrong with me. He is very impulse but at the same time fixates on things. The comments about empathy for everyone but his family really hit home. I am soooooo sorry you are all having some of the same issues but I am sooooooo grateful that you are willing to share them. This has been really hard to deal with.
Posted 23 July 2014 - 01:10 PM
May I be the first to welcome you, you are not alone. Never doubt yourself, ever. This is a good place to ask questions, vent, get support. We are all here for you confused. When you are ready to share, we'll be here.
Posted 23 July 2014 - 03:13 PM
Thanks for the support and quick responses. I have had the same thing happen where other people don't see the personality changes and they think you are just exaggerating things. Ironically, the first person who saw anything was our accountant. Maybe because he only sees my spouse once a year and the contrast was striking. I am so grateful for this form!
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