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Topic Having a hard time adjusting Go to previous topic Go to next topic Go to higher level

By McCall On 2014.06.28 16:17
My husband has PD diagnosed two years ago. He is still working full time and comutes a hundred miles each way to work each day.
I am starting to see, more deterioration starting, easily fatigued and some cognitive. While at present none of the symptoms are severe, I have always relied on him to do whatever needed to be done, and now am seeing him less and less able to do so, which on one level I understand but another part of me, feels stressed and somewhat annoyed when he can't handle things he used to easily do. I know intellectually that is wrong, but I have not yet made the adjustment or transition, and I know it is going to be very hard for me to do over time. I have health issues as well and have been disabled myself for about 20 years.
Here I am just at the beginning of trying to adjust and I don't know how I am going to manage as things get worse for both of us.
I want to be able to take care of him as well as he gets worse and I do have some family help. But how do I deal with the emotional changes as this moves on?

By lurkingforacure On 2014.06.28 18:29
This is a constant struggle for all of us. The best advice I have read is to focus your anger, frustration, whatever, on PD, not your husband. He can't help having PD and would do anything to not have it.

We have kids and they add very different levels and dimensions to the PD journey than most post about here. As I struggle to do everything in our house and lives and take care of all the needs of our kids, I get really angry as well. All I know to do is what most of us do, cope day by day, as best as we can. Knowing you are not the only one in the PD caregiver shoes helps, too:)

By Trusting On 2014.06.28 23:26
I know most of us, maybe all of us, have felt what you are feeling. Although we are both retired I find myself having to do everything by myself. My husband can't start small engines like the weed-eater, leaf blower, etc. because of not having enough strength. Thankfully I learned how to do all of this before he got worse. I find myself frustrated because I have to run all errands with no help since he can no longer drive. Occasionally he will empty the dishwasher or put a load of clothes in the washer for me but mostly it is up to me.
He feels so bad when he watches me do jobs he used to do. Yes, I still have my sad days and feel sorry for myself, then I snap out of it and remember he didn't choose this illness. Adjusting is a process. Some days I think I've got this all down and then, Boom!, something new. One day at a time.
Please remember, this is a safe place to scream, vent or express your anger. The nice thing is we can say it here and our PWP never have to know. Blessing to you and your partner.

By LOHENGR1N On 2014.06.29 01:22
Maybe not your pwp but anyone who stops in to read the threads knows and sees along with the pwp that are here regularly just saying

By dans316 On 2014.06.29 11:32
Just a suggestion, but maybe your husband would be able to use a battery operated weed trimmer or leaf blower or an electric type with a cord. The electric ones tend to be cheaper.

Since my wife is my PWP, I have a different take on things. Laundry, cooking other household chores are all mine now. She did all that for most of our 50 years together, so now it's my turn:)


By mylove On 2014.06.29 12:05
Wait a sec. We are not really shaming someone for using a caregiver group for the purpose it was created, are we? Hoping I'm misreading that. Because for some of us, this is the only contact with the outside world that we have. The world is a lonely place when there's no one to support you through one of the most difficult times of your life. I'm thankful to at least have online friends who understand even despite my physical isolation. I'm sure there's more than one of us who would like to not have to self edit while we are here seeking support.

By LOHENGR1N On 2014.06.29 13:24
No, not slamming at all just pointing out that it is a public site also so while We feel safe posting many, many others read what we write too. Not trying to start a war here just saying what we post in interpreted by others for tone, stress point and inflection from the readers personal view most times. It is a public forum after all and not just a caregiver site and as such others view it for help in answering questions and getting facts along with an occasional vent.

By mylove On 2014.06.29 13:40
I'm okay with anyone who may be here fighting the same enemy - the disease - seeing me be a human being, with good days and bad ones. I'm hoping if I can come here during my bad ones, I can find someone who understands the challenges and can encourage me to keep going on. It's a "Caregivers Information" of the things we need to be providing as information is that these feelings of grief, anger, frustration, etc are normal, and that while we may have to hide them in our real lives, we don't have to deny them here. McCall, have you thought about seeing a counselor? I love mine, and to have that outside perspective helps keep mine.

Just going to note that I'm personally feeling a huge amount of isolation this month, and while I sit here in the house watching happy families walking dogs and bicycling by my window, I'm consoling myself with the fact that I'm not entirely alone feeling this sadness. Surely I can't be the only one, right?

Edited to say: ironically, it's MY health crisis keeping us locked in this week. Goes to show life keeps us on our toes, eh?

By jcoff012 On 2014.06.29 15:36
Michelle, you know you are among know that we all care. I, too, am having health issues...been to too many doctors and had too many blood tests and other tests to count on both hands...Thursday, I go for yet another CBC and blood draw for diabetes testing *both parents and grandmother "got" it around now (I will be 66 the end of the month). And, in going in for a colonoscopy, had to be scheduled for an EKG and yet another blood test before I go in in midJuly...there is concern over colon cancer...lolol...gotta laugh...all this stress is keeping Carl up at night...which I hate...I try to tell him it is just normal pre surgery testing, but he talked to the surgeon, too...Such is life.

Back to the post...I agree, this is a good place to vent, to ask questions, even to be a tad forlorn...I do, however, try to be positive...

Let me explain...Having watched my MIL's PD journey for over 22 years, and seeing her struggle, laugh, love her grandkids, be in extreme pain, freeze, etc., I fully understand that PD is a scary thing for someone who has never seen what the disease does to the body and mind. PD is a lonely disease for a caregiver, too. But, I often wonder if many caregivers who are so overwhelmed looked to their spouses for all or most of their support system, and, therefore, either let slide his or her own ways of coping over the years....just a thought. Carl and I have always been a couple, since we were 17 years old...but, he is his own man and I have my own interests. At times, in the many long, quiet afternoons, I use my inner strength to do that which makes me happy, too...I write emails, paint, draw, bake, etc...Michelle, I know you paint, too...

I also think that the one thing we do for each other is honestly talk about things...the present, the future, etc...We also have made what to many might seem to be a radical decision...We buy what we want when we want or give our grown kids money NOW, not later in a will, so that we are able to see them 1-build a pergola in their backyard or 2-partially pay off student loans or 3-give them money for a trip to Disneyland...All of this makes Carl feel good and he is able to watch the family make memories...and, I think, make memories that include him, even if vicariously...

Now, before we are criticized for being boastful...we are not extravagant people for ourselves...We are able to do this because we have our retirement income, our health and life insurances, etc...We just choose to enjoy life as long as we can...My own Dad used to do the same...He told me over and over, "I want to see you smile, see my grandkids enjoy life...something I cannot do after I am gone."

Just a few random thoughts. We are all here because we are reaching out and/or we hope we can help someone cope. No one person has all the answers nor does anyone here claim they do. We are here because we care and because PD has forced us into this group. Jane

By jcoff012 On 2014.06.29 17:32
Just a PS... [[[[[[Michelle]]]]] and [[[[[[McCall]]]]] and to [[[[[All PD Caregivers]]]] a virtual hug...We all NEED a big hug, don't we? Hugs and have a great rest of the weekend. Jane

By Poostie On 2014.06.30 00:38
Hi McCall, One thing I've learned and am still learning in our 11 year experience with PD is that you can't second guess what the future is going to bring. I know...I've done it a hundred times only to find out when I get there that it's not that way at all. Case in husband went to church with me today and stayed for the whole 3 hour block and a year ago I thought his days of being able to go to church were probably over. Another thing is that I'm seeing him able to remember more since his neurologist put him on donepezil (sp) and he's able to interact with people better. It's happened over and over. I think the worst and things haven't been as glum as I thought they were going to be. We have to take it one day at a time.

I read a quote by Corrie ten Boom which I have on my refrigerator: "Worrying is carrying tomorrow's load with today's strength--carrying two days at once. It is moving into tomorrow ahead of time. Worrying does not empty tomorrow of its sorrow; it empties today of its strength."

As I write this I'm saying it once for you and twice for myself. I think we all experience what you are going through when PD changes the dynamics of our marriage and families. Remember WE CAN DO HARD THINGS with God's help!

By McCall On 2014.07.08 18:43
You wouldn't be LDS would you? just curious I didn't think most other churches had a 3 hour block of meetings.

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