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Mical

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Mical    1

Hi all. I feel a bit deceptive posting here because I'm not a caregiver yet. My partner was only diagnosed last month and is only in the early stages. He has a tremor that doesn't bother him too much but gets very, very tired and has also been diagnosed with depression.

 

I just have a couple of questions about coping. My partner is 55 and I'm 44. We have 2 young boys, aged 4 and 8. I think I'm coping ok with my partner's diagnosis but just before he was diagnosed with PD, my 36 year old sister was diagnosed with breast cancer and I was very focussed on supporting her. Then suddenly I was also supposed to be coping with DP's Parkinson's too and I've been going along ok but suddenly don't feel so good.

 

What do you all do to get by? I can't fall in a heap because my sister and kids need me. My partner is actually coping ok with his diagnosis atm, aside from his tiredness and exhaustion.

 

Thank you.

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Pathfinder    65

Hi all. I feel a bit deceptive posting here because I'm not a caregiver yet. My partner was only diagnosed last month and is only in the early stages. He has a tremor that doesn't bother him too much but gets very, very tired and has also been diagnosed with depression.

I just have a couple of questions about coping. My partner is 55 and I'm 44. We have 2 young boys, aged 4 and 8. I think I'm coping ok with my partner's diagnosis but just before he was diagnosed with PD, my 36 year old sister was diagnosed with breast cancer and I was very focussed on supporting her. Then suddenly I was also supposed to be coping with DP's Parkinson's too and I've been going along ok but suddenly don't feel so good.

What do you all do to get by? I can't fall in a heap because my sister and kids need me. My partner is actually coping ok with his diagnosis atm, aside from his tiredness and exhaustion.

Thank you.

I hear you! I was caregiver at the time of hubby's diagnosis, he had a bad fall that occurred at the time of his Parkinson's and dementia symptoms, but he has improved so much and has stabilized with medication and therapy. Now l joke that l am his insurance advisor, pharmacy tech, driver, etc instead of caregiver! When l get overwhelmed l rely on our children first, they give so much support and comfort. Secondly l find time for me. I love to go to the movies, sometimes a few times a week, and l have a friends group that gets me out as well. What do you do for you? It is so easy to get overwhelmed, especially since you have young children that require a lot of your time. Hoping you can find coping skills that will sustain you down this path.

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Quietstill    450

Hi Mical,

You are a caregiver.  So is your partner, otherwise you wouldn't be with them!

 

The early part is one of the hardest.  You feel the sands shifting under your feet as you realize life has changed profoundly, and you know longer are quite sure what the future will be.  And I'm sorry about your sister, that is so hard.  You go along, thinking that you are doing pretty well, managing to support your sister, and feeling you can actually help other people, and another bomb drops.  Life occasionally sucks, but that's okay.  We all eventually regroup.  I was taking care of a friend of mine one morning a week who had PSP, [Progressive Supra-nuclear Palsy, a PD+ syndrome], when my husband was Dxed.  I couldn't abandon my friend, she was in the end stages, but it was hard for both my DH and myself to see what she went through.

 

Okay, now on to unsolicited advice.  Depression is very common symptom/component of PD.  First, your partner has been hit with a hell of a dose of human mortality, and so is bound to feel situationally depressed.  PD is a progressive Brain Disease that will probably hit those mood regulating centers eventually.  Medical problem.  Encourage  your partner to get help.  Next, show your partner a good example; you have been hit with a lot of loss, fear, and uncertainty, go talk to someone about it.  Just one talk may be enough to let some of the fear and grief out so you are less affected.  Just my two cents here, please feel free to ignore.  Welcome.

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Librarian    13

Hey, I'm not the best on how-to-cope issues but I do have a few things to say in response to your post. First is the deceptive comment. My dh just got diagnosed this year. He is doing great, mostly just the tremor and that not so bad either. Still dealing with the diagnosis, I just had to come here to the caregiver forum. I felt like a fraud since dh isn't bad and I really don't have to give any care. But you know what I realized? I need to give some care psychologically. And I need to give some care in terms of directing medical attention. He doesn't need much of that but still needs some. I talked him into going to a clinic for an overall evaluation. Speech therapy, physical therapy, doctor, occupational therapy. That talking-into was a form of caregiving. So please please come here to talk about anything you are doing to give support or care. And to get support and care from the forum. They are good at that. They didn't make me feel like a bozo..

 

I suggest seeing a counselor or therapist. If you are religious perhaps seeing your religious leader. I'm not religious but we have a family member who is a pastor and she gives good counseling or just a needed ear. She also got me in touch with a guy near me who has PD who I can talk to. I know he has PD and I don't but he is willing to talk. Our PD clinic has referral to PD groups but I'm not ready for that so this guy is a good middle ground.

 

Getting out, doing things for yourself etc. are all necessary things. And you can take or leave any of this. Just know that you can come here and are welcome even if you feel you aren't giving "much" caregiving.

 

Oh, one more thing: my coping after the diagnosis was to go online to learn every thing I could. I work at a university so was even able to check out medical articles. It helped a lot. I was breezing along, feeling like I was cool and then wham! I suddenly could not read a darn thing about PD, couldn't cope with seeing anything on TV, etc. Mind, this was months after I'd learned all I could. I'd stopped looking stuff up because I felt comfortable in my knowledge. But delayed reaction set in and I was filled with anxiety if I hear PD stuff. I'm through that stage now but mention it so you won't feel crazy if you go through stages you never expected.

 

DH, on the other hand had a different coping mechanism. He learned a little bit about the disease but then said, okay, I don't need to hear more right now. If I get a new symptom I'll learn about that but I don't want to spend time learning about everything and maybe living in fear. I mention that just to show how different people can cope differently and neither are the right way or the wrong way.

 

Last, I did notice that the forum isn't hopping. You might make a comment or ask for advice and get a quick burst of replies. However, sometimes you'll post and it will be a month before you get a few replies. Don't get discouraged and do check back.

 

I have no idea of the difficulty you face with kids and a your friend with cancer. But I do send you healing thoughts through the universe silly as that sounds.

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coacht    95

Mical,

I took a break from the forum, mainly because of issues logging in, but I did need a break. I was in a grieving process the first week after my wife's diagnosis. We had just watched the movie "Saving Millie", a few months before. Now it is more just constant frustration, mostly due to the cognitive aspects. My DW has had DBS or she wouldn't be walking now in my opinion. Everyone is different, if you have seen one PWP (Person with Parkinson's) you have seen one PWP. they have lots of things in common, but, each is unique and the progression is different.

 

Coach T

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Quietstill    450

Hi Coach T!

 

And does the grieving ever end?  I'm not sure.  The frustration grows, but I think that is just grieving turned outward.  It's a hard question that I work on all the time.  We're doing well here, but the lights are dimmer.  I am now nagging a lot more.  We had our third talk (already) this month on how a vest over a light sweater is not enough to wear outside if the temperature is under 20 degrees.  I hope that finally stuck somewhere, that discussion is really frustrating.

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miracleseeker    668

Hi Coach T!

 

And does the grieving ever end?  I'm not sure.  The frustration grows, but I think that is just grieving turned outward.  It's a hard question that I work on all the time.  We're doing well here, but the lights are dimmer.  I am now nagging a lot more.  We had our third talk (already) this month on how a vest over a light sweater is not enough to wear outside if the temperature is under 20 degrees.  I hope that finally stuck somewhere, that discussion is really frustrating.

It's a different perspective when someone reads something that has already been a "been there and done that"  My mom has been through that stage and is now beyond that.  Sometimes I shake my head and think you've seen nothing yet just wait... However I know it's all a work in progress.  Everyone will find out soon enough what is ahead of the CG game.  I try to be positive but I still can't see that light ahead. 

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Hello to you!! Please take One day at a time, this helps very much!! i'm very sorry to hear the diagnosis that your love received... Just one day means so much. 

My friend always says there's plenty of time to rest and this is so true!!! My mom was diagnosed with Lewy Body Disease Dementia Parkinson in October this angry viscous monster I mentioned ate a vibrant woman Today we lay her down. So again Every day counts... it will be ok.. How I don't know but it will... I have googled Everything, I went to caregiver support meeting, Anxiety at its finest put me thru the ringer,  I work full time have a family, my dad is 81 strong  and somehow with Love and supernatural Faith we did it. You can, you will... As you Go with the flow... Enjoy today...Breath just breath I sincerely recommend K-Love a radio station (motto is positive & encouraging). Take this from someone who even googles "How is it possible for a person to loose ones mind... :(     

Recent 1 mo ago story, mom had to use the restroom , I took her (she could shuffle her feet back then a little) .. when we got to the end of the hallway she looks at me and says "And now where to? To the stairs or the elevator?"  so I crack up and say "Mom do you feel like using the stairs? she said "Nooooooo" so laughingly I tell her ok then it's the elevator!!! and I quickly turned on the bathroom light  and she said "Wow that was fast!!"  (The house in one level) So I crack up and she does too ....

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Pathfinder    65

I am having a difficult time lately because of so many different issues. Hubby's dementia, short term memory is really getting worse by the day. His PCP changed his depression Meds today hoping that may help, he wants to sleep all the time. He has withdrawn more than ever, has zero interest in anything whatsoever. He is in intense pain most of the day due to Gasteoparesis, getting him to eat is a chore. He now hates to shave and shower, requires me to do most of that for him again since he is just too fatigued. Listen to me, l sound like Debbie Downer on SNL! I do see glimpses sometimes of the person he was. I hate this pain he is having, but his PD is stable right now, we have got that going for us.

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