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Topic Potential caregiver... Go to previous topic Go to next topic Go to higher level

By emerald_2033 On 2009.09.29 19:04
Hi, I am new here and thought I'd introduce myself. My name is Andrea and I live in NC with my children (ages 15 and 12). I have recently begun a relationship with a wonderful man who has PD. We are developing a bond very quickly and falling in love. I approached this relationship with my eyes wide open, John has been very upfront about his PD and the ways in which it affects him. I am disabled with a chronic cardiac illness so understand first hand some of the issues he faces, such as a potentially shortened life expectancy, fatigue, depression, dealing with medical professionals and others who just don't get it and the like. John is 43 and I am 35 by the way, not that it matters really, just background.
It does matter though, since both of us have had a younger than average onset of illnesses. This does influence both our prognosis'.
Anyway, I was a nurse prior to becoming disabled. I do understand the physiology of PD but have forgotten many of the "tips and tricks" of dealing with the day to day reality of it. John has moderate to severe tremors, moderate speech impairment and uses a cane most of the time. He had DBS a few years ago, 3 years I think.
I'm here to meet people who might be in a similar situation, to ask questions, and seek support. For now, I will be reading old posts and digging for info that way. When I have questions, as I am sure I will, I'll post...:).
Glad I found the site.
Andrea

By annwood On 2009.09.29 19:28
Welcome, Andrea. This is a wonderful site and you can ask anything.

By emerald_2033 On 2009.09.29 19:56
Thank you! Still reading old posts and familiarizing myself with the forums...!!!

By annwood On 2009.09.29 21:03
I suggest looking up posts by "Mylove". As I recall she had a similiar situation.

By Pick On 2009.09.29 21:38
welcome emerald,

I am a nursing student and caregiver to my dad who was diagnosed with PD in 2001. I am always reminding my fellow students to think of caregivers....any caregivers.... as "the hidden patient" (I'm sure they are tired of my preaching but oh well!). Given your background, I'm sure you are already aware that the stress of caregiving could potentially exacerbate your health risks.

What you may not be aware of (only because it is woefully underdiagnosed and undertreated) are the psychological/cognitive symptoms r/t PD. Much of what you will read here are posts from caregivers struggling almost blindly with these issues (dementia, dementia-like symptoms, psychosis, etc.). Neurologists are way behind the curve on this problem, in my opinion, and it's a tragedy for pts and caregivers alike. I urge you to take it upon yourself to find out all that you can.

I wish you good luck, good health, strength, compassion and wisdom!

Pick

By annwood On 2009.09.29 22:30
Thank you, Pick. The incidence of dementia is 40 to 60% in PD. My husband was one of the unlucky ones and it was a living hell.

By LOHENGR1N On 2009.09.29 23:50
Pick, I'm not sure most Neurologists are way behind the curve on the psychological / cognitive symptoms r/t PD. Yes it seems a disservice to patient and caregiver/partner both not to mention it until it surfaces. As Annwood says the percentage is high these problems will develop in the progression of the disease. As we've all come to realize here on the forum We P.Ders present different packages and progressions. I believe the Neurologists, because dementia is like Parkinson's itself, progressive and not at this time curable they take a wait and see if it develops attitude. This is not a service to those blind sided when it does. Nor is telling to expect it if it doesn't. It's a hard spot to be in. Also if every aspect that may or may not develop is presented One might lose the will to fight on, toss the towel in and just give up. I don't know, I just don't know the answer! However Pick You are so right in urging all to educate themselves about Our foe Parkinson's Disease. To read and keep current, to watch the research with guarded optimism. To voice opinions pro and con whatever they may be. Take care, best of luck and hang in there.

By Emma On 2009.09.30 05:20
Andrea, I am going to be brutally honest here and say what I think other people are implying in their posts.

My husband was diagnosed with PD about 8 years ago. At the time I was a healthy, active 50 year old working at a job I loved. Three years ago his disability got to the point where I could no longer work and take care of him so I retired. Since then I have aged 10 years. I look terrible and I feel worse. I am mentally, physically and emotionally exhausted. He needs a lot of physical care and he also has dementia, hallucinations, paranoia ... you name it he's got it. At the time he was diagnosed I knew little about PD and thought that he would have some tremors and maybe mobility issues and I was prepared for that. I was not prepared for all of the other issues.

We had been married about 20 years at the time he was diagnosed so we had a fairly long history together. He didn't ask for this, I love him and I will do anything I can for him, but basically I am giving up my life (and health) to make his better. Some nights after he's asleep I get out old videos of holidays, vacations, fishing trips, etc. and watch them. It's bittersweet but it reminds me of who he was (and still is somewhere inside this disease) and why I'm still here. As I said, we had a long history and I am standing by him, but there is no way that I would ever knowingly walk into this if I had a choice. As annwood said, it's a living hell.

Just the physical care (and other physical work) that's required as the disease progresses is something to think about, especially since you have health issues yourself. Unless you are rich and can hire people to help, you will be the one to do everything. Furniture need to be moved? You will do it. Walker, wheelchair, etc. have to go in the car? You will do it. Basement need to be cleaned and things carried out? You will do it. Lightbulbs in a 12' high ceiling need to be changed? You will haul in the 8' ladder and do it. He needs help getting out of bed? You will do it. He falls in the shower and needs help getting up? You will do it. It is physically draining.

Parkinson's is also a very expensive disease. Another thing to think about. I just read somewhere that 70% of families that are affected by Parkinson's go bankrupt. I believe it. We currently spend about $15,000 - $20,000 annually out of pocket for unreimbursed expenses directly related to Parkinson's; medical equipment, medications, adaptive clothing, modifications to the house, etc. Eventually we will burn through our retirement savings and then I don't know what we will do.

All of that being said, this is your choice. Maybe he will be lucky and not develop all of the problems that can come with PD. Maybe you can handle it if he does. Just think carefully about what you are getting into. This is a cruel disease, for the patient and the caregiver.

Good luck to you.

By mylove On 2009.09.30 11:00
Hi, Andrea!

Yes, I can offer some insight into your situation. Mine was very similar. It has been two years and we wouldn't do anything differently, although we struggle with some day to day issues, some related to PD, most not.

My husband also posts here if you would like to hear things from the opposite side. His username is shakydog. He is also young-onset, and has some valuable insights into both living with YOPD and stepping into a ready-made family with teenage children (mine were 15 and 13).

There's a lot of information out there, much of it very discouraging. All I would say to you is that it was very difficult for me to do the cost-benefit analysis on our love and reject it simply because things would almost certainly become difficult at some point in time in the future. We will all be caregivers for some one or another at some point in time, whether it's for a parent, a child, or a spouse, whether it's PD or some other medical condition, so it was not a deal-breaker for me.

I wish you the very best and welcome you to the fold. If I can be of any help, email! :)

By WitsEnd On 2009.09.30 16:39
Hi and welcome to the forum.

My dad went for nearly 10 years with just a little shaking in one hand and little more. Then he started cussing people out. He started the PD shuffle. Both hands got involved and the shaking got worse. He tended to choke on his food. Sundowning started. He started dribbling and drooling and wearing as much of his food as he ate.

Over the course of the next three years full blown dementia set in. He became wild, punched someone in the nose, trashed his room and threw the tv in the floor. He stuffed everything in his room he could into pillow cases. He developed "terminal insomnia" and wouldn't sleep--instead wandering around all night. He started mistreating his dog and hitting her.

Then he got to where he fell a lot--and because he had dementia wouldn't stay seated. He became incontinent--then couldn't urinate. At the end he started wasting away. The best way to describe his body was to mention the pictures of the kids starving in Africa that are nothing but bones.

Then his appetite--always good--started going away and he got to where he wouldn't eat or drink. He became combative and waved his arms in the air fearful and fighting off something only he could see. There was a few weeks where an infection was treated, he was rehydrated, Parkinson's meds were put back into his system along with food with a feeding tube temporarily. During that hospital stay he pulled out his IV 5 times, stripped naked (repeatedly) and tried to go down the hallway, grabbed his genitals and held them, pulled out the feeding tube once, the cathither twice.

He got out of the hospital and two months later I refused to allow a readmission. He stopped eating again and we lost him a week later.

I say these things because you need to know them. You need to know that this could be your future. I'm not saying not to love someone....I am saying that PD can affect him mentally, emotionally, physically and financially. Make an informed decision--not only for yourself and him--but for your kids. You have a choice--they don't.

Good luck.

By annwood On 2009.09.30 18:29
Emma & Witsend, Thank you for your candid, painful descriptions of what your loved one went through and how it affected you. As many of you know my experience was the same. For the last 3 yrs of his life there was absolutely nothing left of the man I married. It happened very fast and as you said, Emma, my health suffered greatly. I honestly did not know if I was going to survive him. After he died I noticed that I was eperiencing PVC's and a cardiac workup diagnosed stress - no kidding! It took me every bit of a year to "get better". The medical literature reveals that 25% of PD nursing home admissions are due to the caregiver either dying or becoming too ill to continue.

I sugggest that you think this through, think of how you will handle teenagers and an individual with an incurable, progressive degenerative neurological disease. How is it going to affect your already compromised health? Once you are in this situation it will be very difficult, if not impossible, to leave. My suggestion is to enjoy each other while you can but live apart.

By shakydog On 2009.09.30 23:00
How to post my thoughts about a new relationship after dx.......

I wouldn't be alive now without "mylove".

At some point in your life you have to judge the risks of a relationship with the end result of being so alone that life has no meaning.

Can you stand to be without the other?

Life sucks and then you die. Should you live alone and be miserable or take a chance on a few years of happiness?

I am loved by mylove. And her children. I have made a positive influence on her and the 15 yo boy and the 17 yo girl. They have made a lasting change in me and I love them dearly. Are we all concerned about the future? Of course. Do we want to go back? HELL NO.

Go with your heart. Don't pass a chance at love. We all have too few days on this world to miss any days of being happy.

Tell him that there are others going through what he is and that we like to talk.

End of sermon

shakydog

By lucy On 2009.10.04 20:42
My husband is also a young onset. He was diagnosed at 41 in 1994. We both worked, and with increasing medication doses, we had a relatively normal life until 2006. In the past year he has been increasingly difficult to live with. He is verbally, physically and emotionally abusive to me, blames me for his "off" cycles, says that I am part of the reason that he has Parkinson's. I read that some of you have been dealing with this behavior and dementia for 10yrs?!?! I can't last much longer. He was evaluated for DBS and instructed to wean off Requip to see if that would improve his behavior, obsessions and delusions. Tomorrow he has the follow up evaluation with the neurologist and psychiatrist. They will talk to me also. My therapist has recommended that I separate from him and I think that I must to save my sanity and health. We are fortunate that I can afford the anti-depressants and a therapist. He can hire help when I go and I will help as much as I can froma distance. Some days I have felt that I can relate to the stories you hear about sometimes where the caregiver commits murder/suicide. Sorry to be so graphic, but this is what it has come to. I did make the marriage vow, maybe I can see my way back in the future. Right now, I hope that I have the courage to get out.

By annwood On 2009.10.04 22:27
Lucy - I am so sorry that you are going through all of this!! Every situation is different so you should not worry about what ANYONE thinks. If you know that financially your husband will be taken care of it is time for you to think of yourself. I imagine all of those people who will talk are the very ones that have deserted you as your husband's illness progressed. If his behavior has become this erratic I doubt that he will be a candidate for DBS. I would accompany him tomorrow, hear what they have to say and make certain they understand what you are going through as a result of his behavior. As you have probably read here it does absolutely no good to try to reason with him - he is beyond understanding. Changing the medications is probably not going to help either - it is the natural progression of the disease. I lived with the dementia (accusations, paronia, compulsions for 4 yrs and there were many times I thought of leaving. Only you can decide what is best for you - we on the forum are not judgemental and we are here for you. Take care.

By dkleinert On 2009.10.05 00:59
I echo Emma's reply. My husband and I have been married for 28 years now, the last 5 knowing he had PD, but realizing that all of the verbal abuse, the lying, the bizzare behavior he began exhibiting a few years before were PD before we knew it. I was leaving him the week we found out he had PD because of his horrible treatment of me. I was totally broken by it. He was unrepentant and it was unbearable. He wrote hot checks, bought things on the internet and exhausted credit cards, shop lifted right in front of me (I always made him put back what he had pocketed), lied about everything, was so mean.....but then when we found out he had PD and the meds kicked in (especially the Abilify), he was different and so I stayed. The verbal abuse stopped, and many of the other behaviors have stopped over these 5 years - to be replaced by him now being, as one of you so well put it - like caring for a 3-5 year old. Do I wish I had left him then? No, because I know he would probably not be on this earth if I had, and I don't think I could have lived with that knowledge. Has it aged me - YES, YES, YES. I, too, know I am giving up my life each moment and each minute for him so he can continue to live. We give up having a partner, a best friend, a lover...a helper, fun and a social life.....that is all taken away little by little with PD.

ONLY YOU know what you have lived with and what you can handle. Each of us can only give what we have, and nothing more. If anyone judges you - they are the fool. It is your choice for your life - it has to be. Each of us has to make those choices every day for ourselves.

You are always welcome here to say anything and ask anything. We care about you.

By mylove On 2009.10.05 12:58
Andrea, are you still there, or have we chased off another one? I'd like to chat if you're still around.

By WitsEnd On 2009.10.05 13:36
I wanted to add one other thing for what it is worth. In life, there are lots of opportunity for regrets. I usually don't accept regrets. You do the best you can with what you've got and move on. Hindsight is 20/20 and I'd rather be looking at the next tripping hazard than looking behind me. A look back is only good to the extent that you learn from it.

As far as my dad, though, there was one regret I do have and that it was that I didn't seek help for myself sooner--and that I didn't find this forum sooner.

I dealt with dad's erratic and abusive behavior and I thought it was just because he was a difficult personality. He never had been an easy going, outgoing person--and when he got mad he could look downright wild eyed. This got worse with the PD.

I, like somebody else mentioned on an earlier post, thought PD was just the shaking. I didn't know about all the paranoia or hallucinations until near the end when I found this forum. I wish I had understood sooner. Maybe it would have been easier not to take it so personally.

You're doing the right thing by asking the right questions.


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