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Topic Routines and random thoughts Go to previous topic Go to next topic Go to higher level

By mylove On 2010.04.24 22:42
Shakydog is sick today. No idea what, maybe just a bug. The fatigue has been great. He had two naps today and can't shake the achy, tired feeling, so he went off to bed by 5 or so tonight. I'm sitting here in the living room staring at the wall, feeling like my world is off kilter.

It's been a rough couple of weeks. We had two Red Cross volunteer calls this week, we had to take our daughter for a minor surgery yesterday out of town, we had a small matter in court last week, and have been pushing to finish an outdoor project (and coordinate around some of the nastiest weather we've had around here in a while). Our daughter is also getting ready to graduate, which means a lot of hurrying/scurrying and financial juggling. Small wonder he's tired! I hope this is just fatigue and stress catching up to him, and that he will sleep enough to catch back up. I hope it isn't a bug or something more serious.

I think I'm sitting here stewing because I've personally had a really rough couple of weeks myself. Last week one of our friends at work lost his wife unexpectedly. She had terminal leukemia, so it wasn't completely unexpected, but he had come in to work that morning as usual, thinking it was an average day and that she was doing well. He went home for lunch and she was gone, and had been for some time. Ironically enough, someone else at work lost their own wife the same day, in the same manner, just a different cancer. And this week one of my friends emailed me to tell me that one of our close friends had just lost her mother, out of the blue.

I am having a very hard time with it. I usually try to keep it all enclosed, but the day our coworker's wife died, I came home shellshocked. Shakydog gave me a hug and I cried and cried. It's just the whole concept of it. That man knew his wife had a terminal disease, but they were getting by, day to day. She was well enough that he went off to work as usual. There were no clues. Just - boom - gone. No goodbyes, no transition. Just the shock.

Shakydog and I have an understanding. Some day, sooner or later, he'll decide that work is too difficult to continue with. He has a free pass to retire whenever he wants. Right now, the financial end is breaking even. It would probably pay him more to stay home, but he works because to not work is to acknowledge the full stop. Karolinakitty posted on another post about obsessions and talked about this in a nutshell, and I would have to agree. We both know that I have several more years to work past when he can stay home. We've talked a little bit about what will happen then. But I would say that what happened to our coworker is my greatest fear. What if I'm not here and something happens?

It occurred to me tonight how bound by routines we are. We go off to work, come home, move in our own circles, sometimes separately, sometimes together, but in patterns so entrenched that we've worn a path on the floor. We take comfort in the familiar. He may not be right next to me, but I know he's out in the garage, tinkering on the workbench, or he's outside having a smoke, surveying the yard, or he's working on the computer, making music. When he's sick like this, the whole world stops. The house gets too quiet and I don't know what to do. I do have my own interests, but it's hard to concentrate with him out of place. Have you ever noticed how many of the things you do are for two?

By karolinakitty On 2010.04.25 07:49
Mylove, I do know about the twos.... without him able to work, it has become an even closer two. We have to keep our distance and have our "me" times, but i know what you mean.
Even when i read the passing of a caregiver here's pdr, it makes me stop and think "I will be there too".
Sorry you have had so much to deal with recently. All the "fun" of graduating can cause stress to anyone. Sounds like my last "season". We call them seasons as busy, stressful times come and go. Last season was hellacious. Financial, medical, dealing with disbaility, family issues...man i really wanted to hide sometimes. I'm hoping it's just the stress factor with Shakydog.
During all last season, mine hardly slept, was in more pain, walked slower, the whole body and mind was effected by the stress.
I know Al has said a million times the stress factor has a lot to do with the PD and boy i know it first hand.
Now that issues have been resolved, we are doing some things he has been wanting to do but couldn't, he is stronger, getting more sleep, having more fun and in general seems to be better, for now. We went to the neuro the other day and he was amazed at how "good" he looked and talked. Taking away the stressors was a big relief and truly made him that much better physically and mentally. He actually did better on the memory test than he normally does.

Sorry about your friends deaths. I guess as caregivers we know the ultimate, but when it happens we are still shocked and upset. I think "not being there" would be the thing for me too. Even sometimes when i adventure into town for that hour or so, in the back of my mind i'm worried if he's ok.
Our comfort zone, the routine of life is gereally out of order when some is not feeling well, but, when we are dealing with a different not feeling well, i think mortality issues pop up and we deal with it different then others

By Emma On 2010.04.25 11:25
mylove, I'm sorry to hear that your husband is having a bad day. It sounds like you two have had a busy and stressful time lately so hopefully it's just that and he will be back to normal soon. My husband usually crashes and burns after a busy or stressful time. It passes. I do think that we caregivers tend to be hyper-vigilant about changes in our parkie. We always wonder if it's just normal stuff or a harbinger of something worse.
I applaud your efforts to keep busy and keep doing the things he loves as long as he is able. I did that with my husband too and I'm glad I did. At this point there is so little left for him that he can enjoy but I'm happy that he stayed busy doing things he loved for as long as possible.
I retired four years ago to stay home with him full time. I had to, he couldn't be alone anymore and I decided that I wanted the time with him rather than pay someone else to do it because I didn't know how much time we had, and like you, I didn't want to come home to find that he had slipped away. I was lucky to be able to retire with a pension at 55 but it still was a big blow to our budget. We've managed but everything I thought would happen when we retired is out the window. Things change, priorities change.
I must say that while togetherness, the "two" thing is nice, 24 hours a day of it is a bit much, and would be even if we were both healthy.
Unfortunately, with this disease we don't know what will happen but awareness of mortality does loom larger and it's something we have to think about. That's why I have spent a lot of time with my husband talking, making decisions and making peace. We both find it comforting rather than morbid. Still, when he's sleeping I frequently check him to make sure he's OK. I'm afraid and sad much of the time but he's still here doing the best he can.
It's a rough road. I hope that you have many good years yet to come.

By mylove On 2010.04.25 15:01
Thanks, guys. I feel so naked sometimes. It's a learning process all along this road.

I had an awful choice 'momwise' last night, to top it all off. Our daughter had her surgery Friday and was finally feeling well enough to start running around again last night while Shakydog was sick. Someone needed to go pick up her brother on the other side of town at his girlfriends house, so she volunteered. I told her she could pick up ice cream on the way if she wanted, and she said I should come too, rather than them bring me back some.

I could see that she really wanted me to come. I don't know whether it was because she still felt punky and wanted company, or whether it was something else, but she asked me several times.

I wanted to, but I told her no. It was after 9 p.m. and he'd been in bed all day. I knew she was right and that he'd probably never miss me, but the total trip would be almost an hour, and I didn't want him to wake and need something and find no one home. That old fear was sitting square on my shoulder. In all fairness, I wouldn't have left any one of my family members home alone while they were sick, etc.

It was an incredibly hard decision, and left me feeling both that I need to make up with her today, and that I was forced to choose between two family members that I love very much. I've just finished reading Lurking's post above and my heart breaks. It has to be ever so much harder when the child in question is young and can't understand. At least I can tell my daughter, even if she doesn't share my feelings, she can somewhat comprehend the thought process. But she is still young and invincible, and bad things don't happen in her world.

It turns out that it seems to be the flu. He's up this morning, and hopefully getting a little better after nearly 24 hours of sleep. He's going to try something to eat and go back to bed. And I - I have to go to work on a Sunday, and leave him again. This stinks.


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