What about Dad?

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What about Dad?

Postby lbc15 » Wed Sep 24, 2014 9:51 pm

My mother passed away at the end of May in 2012 after battling PSP with known symptoms for approximately 5 years. My father was her primary caregiver - all the time in the beginning and then we had a caregiver during the day on the weekdays and someone to make dinner 4 weeknights. Dad fought so hard for Mom to have as much of a normal life as possible until the very end. During her illness, when Dad got very frustrated, he would make comments that he had given up his life for her and that he had nothing to look forward to, etc. etc. I had a 2-year old and was pregnant with my second child when Mom died, and my one consolation, over losing my best friend and knowing that I would be dealing with a pain that would never go away, was that Dad would get his life back. And he could see my brother in DC (we live in California) and he could travel with us and spend lots of time with the grandkids, etc. etc.

Instead, when Mom died, Dad was just broken. And he hasn't really gotten any better. He still lives in their 3400-square foot house on 5 acres of land. He's semi-retired, which means he'll work a week here and there in relief for his partners. And he comes down to our house for dinner every night. His hobby is flying and he does still have his airplane and get out, but that only fills so much time. The rest of the time is largely spent reading or watching TV alone. He's not totally grumpy all the time, but he's still pretty unhappy and sometimes it can be really difficult to be around him - not so much for me, because I'm used to it - but for my husband and the kids.

Add to that the fact that my husband has decided that California is not where he wants to live anymore and that we should move to another state. We just spent 4 months in Idaho for his job and my father was miserable with us gone, but refused to come up and visit. He says he needs to be in his own environment. He doesn't have any major health problems, save for the usual stuff that will start creeping up on someone in their late 70s. He is not close with his one sibling, no other family (my mom's family kind of went off the deep end when she died so we don't really talk to them anymore).

My husband and I fight all the time now. I actually wouldn't mind moving so much and I've really enjoyed Idaho this summer. Except that I just can't leave my dad. My husband thinks I'm prioritizing my dad over my own family. I really don't want to get divorced because I couldn't bear to be away from the kids every other weekend or whatever it would be. Has anyone else dealt with similar issues regarding the surviving spouse after PSP or a related disease? I would be eternally grateful for any advice.
lbc15
 
Posts: 11
Joined: Mon Mar 30, 2009 8:33 am

Re: What about Dad?

Postby boxcar9 » Sun Sep 28, 2014 11:39 am

Hi

I'm sorry for the loss of your mother to this horrible disease.

I can relate to what you are experiencing. I am full time caregiver for my mom w/PSP-CBD (and maybe even DLB) for about 3 yrs now.

We ARE victims of a WAR.


Who knows how long it will take to recover? And, for sure, WE will NEVER be the same.

I feel like EVERY aspect of my life is falling apart.

THE IMPACT TO THE FAMILY IS UNREAL!


Do you feel like your insides have been ripped out, laying on the floor and feel utter astonishment at how to put it all back together?
That's pretty much how I feel everyday.

YOU ARE NOT ALONE!


You had the expectation that your Dad "would get his life back". Now that it hasn't happened, there's an issue.

PLEASE BE GENTLE TO YOURSELF! (and ask for loved ones to be gentle in return--you may not get it, but you surely won't if you don't ask)

You can't know how someone will process grief. You can "expect" how they will process, but it's who knows when or how it happens? (and ya know what they say about "expectations")

I think you don't want to leave your dad because you sense something is wrong.


Now, we don't expect people to remain the same after the loss of a spouse, but their inner soul and personality traits should generally remain the same.

If he's not himself, there's something wrong. Maybe it's something simple, but what if it's not? Would you consider a major medical work up for your dad? Would he?

I'm a little surprised that he didn't come to Idaho to visit. That also signals an "alarm" to me.

If this had happened BEFORE your mom was ill, would they have traveled to see you & kids? If not, then maybe no issue. But for him to go 4mos without seeing his grand kids when he has seen them every night at dinner, hmmmmmm. Has he traveled at all since your mom's passing?

He says he needs to be in his own environment


If he traveled prior to your mom's illness, and now he doesn't want to, WHY? Is he compensating for something?

Does your husband want to move to escape from your dad? If that's the reason, then there is something that your dad needs to address.

Side note: I think you should experience an Idaho winter before deciding whether or not to move there. Also, be aware that Idaho is DIFFICULT to get to via commercial air traffic. The nearest major metropolitan area for medical care should you, your kids, or husband need it, is FAR away. Don't get me wrong, my niece lived in Idaho for a couple of years & loved it, but she is now back in FL. And I have another niece in Wyoming--so I have an idea of what it's like to be "remote".

Life is so HARD. (what an understatement!)

Let's say for a moment, that your dad was not a factor in your deciding to move (for any reason), would you move EVERYWHERE with your husband???
If the answer is "yes" . . . . . (Who mentioned divorce? you or your husband?--that seems pretty extreme for this situation)

For me & mine: I would move ANYWHERE with him in a heartbeat. That said, this ridiculous disease has made a huge hole in our relationship. We argue more than I like and it ALWAYS has to do with outside influences of OTHER PEOPLE--MOSTLY FAMILY & sometimes work (sometimes my hormonal issues).

What we fight about OR that we have MAJOR stress over that we never did until this disease:

--a single parent family member w/1 kid who has difficulty supporting themselves; who is supporting the hubs ex spouse who is dying of cancer; & hubs can't say "NO" to--he's given $8K CASH in last 2 yrs, not counting the babysitting, errands, a car, court dates for custody issues, etc.

--a family member w/narcolepsy not well-treated that I am legally responsible for with OCD/hoarding who is currently in court over the hoarding

--sibling going thru divorce & embarking on new relationship that could be a huge mistake,

--my mom's mother just passed away leaving my spinster aunt alone w/no one looking after her,

--siblings that don't offer ANY support to me or mom (they r too busy in what I call their "christian cult" or have little kids & 1.5hrs away from mom)

--the adult kids w/1 baby who we don't see cause they are not the "squeaky wheel" but they are "clueless" sometimes about installing a baby gate, etc.

--the hubs is gaining weight, I am losing it

--we have ZERO friends anymore

That's the tip of the iceberg for me. It's a war & we are the walking wounded.

Are you POA for your dad? There are LEGAL responsibilities associated with that. And if he doesn't have one, that should be addressed ASAP.

I think you might want to visit this website for some info. I haven't looked at it thoroughly, but you may find some valuable information:

http://www.aftergiving.com/


Also, here is a link to a study on Bereavement after Caregiving:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2790185/

Robin and Ed on this forum both had extensive experience with caregiving. So, I would also look at their posts. But, I would think by now, that your dad should be showing some improvement--that is why I would look at medical issues. And, if you're thinking that 2 horrible medical issues couldn't happen to your family--THINK AGAIN. Ed's mother had Huntington's disease and his wife PSP. So, he's been thru the mill.

Finally, don't be afraid to consult with those more experienced than yourself. Try to take a deep breath and use common sense. Sometimes taking yourself out of the situation & "renaming the people" in the situation will help you see it clearer.

I hope this helps to get you started on a path. Peace!
boxcar9
 
Posts: 88
Joined: Tue Sep 04, 2012 5:01 pm
Location: Illinois, USA


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