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Topic Emotional Roller Coaster Go to previous topic Go to next topic Go to higher level

By Trusting On 2014.11.08 22:56
I'm just needing to vent. I feel like this emotional roller coaster isn't going to ever slow down.....

My PWP and I took an 8 hr trip last week to see our son and his family. We had a nice time together, spent 2 nights in motel then headed home. While there I noticed that one side of my husband's face was drooping. I took him through all the home tests for stroke but he could do everything with no problems. He was tired and out of routine. We got into the car and drove straight through taking breaks every couple of hours. Once we got home he couldn't do even simple things like dress himself. He could barely move his feet. We saw a primary physician and he didn't think there was a stroke but said to let him rest, rehydrate and if there was no improvement we were to go to the ER.

A week has passed and I'm seeing improvement but won't be taking any trips for a while. I feel emotionally drained. I'm tired! I packed our clothes, loaded the car by myself, drove with no help, made all the decisions with hopes we would have an enjoyable restful time away. I got home, unloaded the car alone, unpacked alone, and immediately had to begin the worry of what is going on with him. If I take him to ER they will keep him overnight and that is hard on him and me. If I don't take him and something bad happens will I feel guilty forever?
I told you.....I just need to vent and am feeling guilty as I write this. I was also told this week that I shouldn't leave him for more than a few hours at a time unsupervised. Although I seldom do this anyway it was very hard hearing the doctor say it. (I have not shared this with my husband and don't know if I should). Thanks for listening. I know tomorrow will be a better day!

By umajane On 2014.11.08 23:26
We will be camping for 5 days at Thanksgiving. I know this will be super stressful for both of us and there will be consequences. Our family will be there but that is not always super helpful.
I will also be loading our clothes, the food, driving and then all over again when we return.
I know my husband will be a mess for a few days after...But should we stay home because everything will be easy and BORING. of course we will go.
I am thinking that IF I can schedule my caregiver that she can help me load and unload and do all the extra laundry and cleanup. As caregivers we have to do everything but what is the alternative....I say go for it and keep it as stress free as possible. HA HA is that really possible???
I guess I am stressing already.....just venting

By carman96 On 2014.11.09 09:05
Trusting, I planned several trips this last summer. 1 week at camp cabin, two weeks in Maui, and a weekend in Tahoe. I figured now or never. Of course I have to do all the packing and driving which I expect.
I knew my husband would be very tired, and he was. But a few days after we got home from the last trip, he started retaining urine. He had a catheter for 5 days, then got a UTI. Never went in the hospital, thankfully. But many trips to doctors.
He is back to pretty much normal after two months. Now we hardly go anywhere except doctors and physical therapy appointments. That wears him out too.
I really think our traveling days are over. It just takes way too much out of him.
Just make sure you check his temperature. UTI , even pneumonia, can sneak up on you.

By carman96 On 2014.11.09 09:10
Umajane, you make a good point about staying home and being bored. That's my life right now. 5 days isn't too bad. Have fun but make sure you both get some rest.

By LC On 2014.11.09 10:15
We don't travel anymore. We go for rides locally. Even that can be trying some days. He now goes to adult day health care 5 days a week. He comes home every night. It helps me and I also think it helps him to be around other people. He has always been very sociable.

By jcoff012 On 2014.11.09 15:55
It is Sunday and we are getting ready to fly from California to Ohio on Saturday. My Mom will be 95 and can no longer fly, so it is our turn. We flew from Northern California to Anaheim in October, which basically went well.

I am concerned about this trip because of the change in weather...we are in the upper 70"s, she is in the 20's! But, I guess we will see how it goes, It is a short trip and will be quiet, so I am hoping the flying will not pose a problem.

I agree, go when you can...life is WAY too short!

By LOHENGR1N On 2014.11.10 00:06
I try to stay away from vents here because I usually get myself in trouble if I don't, But maybe I'm misreading something or I don't know. Someone correct me if I'm reading it wrong please. umajane posted about going camping for 5 days. "I know this will be stressful for both of Us and there will be consequences." I know my husband will be a mess for days afterward...But should we stay home because everything will be easier and BORING, of course we'll go." I'm having trouble with that. Unless your husbands really wants to go and is aware of the problems you're foreseeing and still wants to go give it a try? But that isn't included and is what is giving me trouble understanding it. I know that caregivers need to take care of themselves too. I'm not saying you don't. just the way it comes across to me reading it is rather than stay home and be Bored you'd subject the patient to a situation where not only for the time involved it will be stressful and hard but fully expecting the effects of it to last and linger with the patient for days after? Please I'm not trying to start a war I'm just trying to understand

By mylove On 2014.11.10 10:12
I think there are two factors to remember. On the board, we hear one person talking on behalf of two people, although that is sometimes hard to come across. I can't imagine that travel of that magnitude isn't a shared decision by a couple.

The other is that sometimes we go because there's a sense of doing things while we are still able. Ben and I are in that boat right now. We know we will "pay for it later", but reality says that at some point the options will be totally off the table for us so we do what we can while we can. I know I let him make the decision on whether that's a sacrifice he wants to make or not.

I also know that I'm doing as much presuming and projecting as anyone else in trying to interpret short comments, so I'll let everyone else weigh in. I just want to say please don't assume that caregivers are selfish people visiting the force of our will on innocent sufferers. Most of the time we are couples both struggling with this damn disease and still trying to have a life despite it all. We personally try really hard to be a loving, normal family first, in a household where PD is an unwelcome guest.

By LOHENGR1N On 2014.11.10 10:40
As I said I'm trying to understand the post that is all. If I were even thinking caregivers were imposing their wishes or wills upon innocent suffering victims I certainly would have come at the post a different way, by now you all should know that.

By jcoff012 On 2014.11.10 12:01
We are flying from Northern California to Ohio on Saturday...maybe, because we have our savings, we are luckier than most, but we are going to drive to Sacramento and spend the night so that we will have time to relax and leave on Saturday morning. We also planned a stop in Chicago to deplane and take a two hour break...Carl seems to do best if we don't fly straight through...

This trip was HIS idea...he wants to celebrate my Mom's big birthday, and is determined to make the trip...sometimes we do things that we should probably not, but when he is determined, at least we try. I never want to harm Carl, but I also do not always want to give him orders about everything he can or cannot do...

We all do what we think is best...sometimes we make mistakes, but if made from love, we do our darnedest!

By umajane On 2014.11.10 17:45
Ok let me explain my post. My husband loves to go in the RV and looks forward to it. It has been a family tradition to cook our turkeys outdoors and just hang out. The stressful part is the work I have to do to be sure to have EVERYTHING he needs along. Of course he will not rest like he does at home and being in a small rv is fun but difficult under any situation. For example smaller bed, smaller bathroom etc.
He will be very tired because with 12 grandkids, our grown kids etc etc. it will be hectic. I will be tired because I am over 75 and getting older without PD makes me more exhausted. But it's all good fun as we sit by campfire etc. I had to vent because being type A and cooking etc it is a big deal. Last year we drove there for just Thanksgiving dinner but this is what we want...but yes we will pay the consequences of too much family and too much food. Al, I hope this makes more sense......

By umajane On 2014.11.10 17:51
My love, you put it very well when you said someday the options will be off the table...so while we can we will try and live with the consequences and enjoy what little we can still do in terms of traveling

By LOHENGR1N On 2014.11.10 18:05
Yes, umajane that clears up my questioning. Thanks I do understand and thank you again for explaining it.

By carman96 On 2014.11.12 09:28
Trusting, hope your husband is doing better every day.

By Trusting On 2014.11.12 11:57
Thank you for all who responded. My husband is doing much, much better today. I am realizing he just doesn't do well if he is out of his normal routine.
I think our traveling days are over at least for now. We'll find some things to do a little closer to home.
Blessing and prayers to all of you who are in this battle.


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