Facing facts. Denial of the future

Cordelia-Mary,

A BIG hug and thanks for being a caregiver. Those of us with PD can't thank you enough. It isn't a role you chose and yet you choose to accept it. Not everyone has that committment.

There are some resources online. One is the National Parkinson Foundation (NPF). They have a caregiver section at http://www.parkinson.org/caregivers.aspx  (You should be able to 'click' on that link to go there - else copy-and-paste it.)  First and foremost, it's important that you take care of yourself - physically and mentally. You can't help others if you don't help yourself and remain strong.

You mention a support group. I hope you have found a caregivers support group (or start one) with whom you can share ideas, concerns, things that work, things that don't work. And ... maybe just laugh together.

You mention the 'final path'. I'm not sure what stage things are in, but I feel strongly about quality of life. There comes a time when decisions are made based on quality of life. The important part to remember is that they/we will be going to a better place. It's sad and happy at the same time. Hopefully you can celebrate the happiness. I wish you the best of luck and again, thanks for being there as a caregiver. I hope you will receive feedback from other caregivers.

My husband has had PD for twenty years.  We've been married for sixteen years.  When he asked to marry me, I told him I would marry him but I would not be a caregiver.  He assured me that I never would be.  Now he is in end-stage PD and I am his primary caregiver.  For the longest time I was so resentful and angry, but that time has passed now that he is in the end stages of PD.  I am so happy to hear that you and your husband are renewing your vows.  Being wife and carer is not easy as you indicate in your question about the two different roles.  I have discovered that I personally cannot separate the two, but it has not been a problem in this stage.  Earlier, in denial, I would assume he could do things and just wasn't trying hard enough.  As his carer I would understand, as his wife I grew short-tempered and parental.  It wasn't good.  And your diagnoses of your own illnesses certainly must wreak havoc on caregiving.  What saved us was hospice and the hiring of a part-time private caregiver.  I was not ready to accept hospice care, but a friend insisted I call and just get an evaluation.  I talked with my husband about it first, and he agreed to just an evaluation.  That was over a year ago and we have had one of the best experiences of our marriage.  A team of caregivers who come to our home, who love and care for both of us, and who handle all of the issues that arise with medications, bowel problems, urinary tract infections, and facing the future.  I would recommend a call to your local hospice organization if you haven't called already.  It is not a death sentence; it is a chance to live life as fully as possible during this time.  That has helped me share some of the burden of being both wife and carer.  I am not alone.  Other people love him, too, and they love and care for me. 

I live in Ohio USA.  Isn't the internet amazing?  I'm 63, my husband is 68.  He's had PD since he was in his late forties.  Earlier in his disease, when he was still able to do just about anything, he agonized about the time when he would no longer be able to think properly nor move from a bed.  He contacted the Hemlock Society, now Compassionate Choices because he thought he would want to take his own life when the time came.  Now that the time is here, though, he has graciously let go of one after another of his abilities and allowed me to care for him.  Don't get me wrong, he fought each step of the way, so the interim years were difficult for both of us.  I wanted him to do everything for himself that he could possibly do, but the falls (and he had many of them) were frightening.  Once he cut open his head and we were in the emergency room for hours.

Also, he was getting recurrent urinary tract infections which were causing him more and more anxiety as well as hallucinations, etc.  I didn't realize that uti's could do that.  The hospice doctor put him on a low-dose generic antibiotic called nitrofurantoin and he hasn't had an infection since.  Very helpful.

Finally, I had to explain to him that hospice was not a death sentence, but a way for us to continue our lives together in the best way possible.  I told him that I needed help to keep him at home.  That was the truth.

So, I wish you and your husband the very best during this time, and I encourage you to find some way to enjoy the life that you have.  I have found some solace in doing sudoku, believe it or not!  Crazy, but it keeps my mind off other stuff and keeps my mind active.  I also try to get out, even if only to the grocery store or for a drive.

I feel the same about your emails.  It's like you're right here talking to me.  I'm sorry it sometimes takes me a few days to get back with you.  I do not have a computer at home that works, so I have to use the one at the library.  That means I have to have a caregiver at home, plus have to get to the library during their reduced hours. Sometimes it just doesn't work out.

I love your description of the mini vacation for your husband's birthday.  Sounds lovely.  Ron and I did similar things a few years ago and really enjoyed our stays in out of the way places.  I remember one in particular.  It was a tiny cottage on a beautiful lake and we had such a peaceful time there.  We also took long drives in the past several years.  I'd ask him which direction he'd like to go and then we would head that way.  Our last drive was quite a few months ago, now, but it's o.k.

I told Ron that you and I are corresponding and that your husband is in the place of denial.  I talked a bit about my memories of  being in that place with him and he nodded with understanding, then said that your husband will get to that place of acceptance.  It made me feel good to hear him say that.  I truly believe Ron is finally in that place.  He fought each new disability, but was gracious when he reached the point of being totally unable.  For instance, he can no longer feed himself.  It's one of the last things he gave up and he really tried to keep going.  Finally, he saw that very little food was making it to his mouth, so he allowed me to feed him.  We didn't really talk about it.  I would feed him the first spoonful, saying I wanted to be sure it wasn't too hot, then, if he didn't grab the spoon, I'd know he wanted me to keep on. 

I agree about the elephant in the room.  Oh my goodness that thing is SO big.  But, it's getting smaller and smaller little by little.  We have even started talking about death, something he would never broach before.  He'd look away or pretend he was sleeping, but now he is able to listen and say a few words.  Today he told me that his uncle was in town.  His uncle has been dead for many years now and he wasn't such a great guy when he was here.  He said his uncle was in good spirits and seemed to have taken some responsibility for the damage he had done to others.  Ron didn't seem to have any idea that his uncle had actually died, and I didn't say anything about it.  I just asked how his uncle was doing.  Ron has had hallucinations for many years now, although, thankfully, they aren't as bad as they used to be.  He also has delusions that he's still working on projects.  He worked 30 years for Pilkington as a chemical engineer, but retired twelve years ago.  For the longest time he wanted to call former workmates to talk about the projects he thought they were working on together.  Often I would try to redirect his attention, but when I couldn't, I would dial the number for him.  Once he talked to his old boss for forty-five minutes.  Bless that boss for listening respectfully.

I hear you about the weight loss.  Ron was a big round guy and is now so much thinner.  The hospice doctor asked once if he had lost weight and I said yes, quite a bit, but the doctor did not seem concerned about it.  My dad had Parkinson's, too, and he, too, lost lots of weight.  Your description of the tightened belt with the bunchy trousers reminded me of him.

Well, I have limited time here at the library and have to get off before the monitor goes blank and I lose my email.  Great to be in touch with you again.

Sue