Caregivers and Stress

[Brae Windsong]

I have been taking care of my spouse for about 8 years. She's been on Hospice for almost 3 of those. She has heart failure. My brother moved in about 5yrs ago and is a big help.
She stays in her hospital bed in the living room all the time, and I stay in my room.
The weight of long-term caregiving is enormous. I get very little time away. I did go see my kids in Sept to welcome my youngest grandson and I've scheduled a trip there for next week. I went back to college last year; so I get out of the house one night a week for class. Other than that, I'm here all the time.
I struggle with burnout daily. I see a therapist, but I haven't found a support group.
I would love to interact with someone about the stress of caregiving.
Gentle hugs to all the caregivers.

[Kelt]

Whew! Taxes.

Just short of a year ago in a huge karmic swipe, my father died on tax day. You had to know him to get that, but to say it was ironic is a major understatement in a Monty Python kind of way...

Today the E-file happened, 7 federal and 2 state tax returns filed and the only one of them that needed a 90 day extension (estate) was also completed. While I'm no accountant, I was the one who rescued the three carloads of paperwork and brought it all back to my place for sorting so that I could spend the last six months looking for and providing the answers to the endless stream of questions from 3 accounting firms.

I can breathe again.

Well, for a month or so anyway. There are other legal things afoot, but for me this was the big day, I couldn't stand the though of a bunch of extensions dragging this out forever and it actually got done!

I know it doesn't really sound like a caregiver stress, but this was background music to a host of issues with my mother's practical needs and the fact that she has both dementia and now cancer too; an interesting mix since she keeps forgetting she has cancer. For the best I suppose. I'm on a learning curve with each passing month or so presenting a new puzzle to solve. What has she forgotten to do? How do I fix that from where I am? Does she even know she forgot how to do something? Or, did she just stop doing it?

I'm incredibly lucky in that I have found some really good "on ground" caregiver help and her RN is in a position to hire and manage other care providers to spot changes and help her with things that need helping with. (An ever changing menu)

I dunno where this is going... I'm just glad the taxes are done and Mom is safe.

[MsTinkerbelly]

Originally Posted by Kelt

Whew! Taxes.

Just short of a year ago in a huge karmic swipe, my father died on tax day. You had to know him to get that, but to say it was ironic is a major understatement in a Monty Python kind of way...

Today the E-file happened, 7 federal and 2 state tax returns filed and the only one of them that needed a 90 day extension (estate) was also completed. While I'm no accountant, I was the one who rescued the three carloads of paperwork and brought it all back to my place for sorting so that I could spend the last six months looking for and providing the answers to the endless stream of questions from 3 accounting firms.

I can breathe again.

Well, for a month or so anyway. There are other legal things afoot, but for me this was the big day, I couldn't stand the though of a bunch of extensions dragging this out forever and it actually got done!

I know it doesn't really sound like a caregiver stress, but this was background music to a host of issues with my mother's practical needs and the fact that she has both dementia and now cancer too; an interesting mix since she keeps forgetting she has cancer. For the best I suppose. I'm on a
learning curve with each passing month or so presenting a new puzzle to solve. What has she forgotten to do? How do I fix that from where I am? Does she even know she forgot how to do something? Or, did she just stop doing it?

I'm incredibly lucky in that I have found some really good "on ground" caregiver help and her RN is in a position to hire and manage other care providers to spot changes and help her with things that need helping with. (An ever changing menu)

I dunno where this is going... I'm just glad the taxes are done and Mom is

safe.

You have accomplished so much in a year!

The fact that your mother has been safe and well cared for is nothing short of amazing given your grief, the heavy load of paperwork, new home ownership and the logistical nightmare of doing it all many miles from your mother.

I hope you don't mind, but you are always in my prayers...comfort and strength in all you have to do are my focus.

[dykeumentary]

Eldercare is hard, I imagine spouse/partner care is also really difficult.

[TruTexan]

me, I'm a caregiver to my mom already and now my aunt, since my uncle recently passed away. I'm stressed out big time. my ptsd is running an ugly muckity muck in me. I've been ordered by my therapist to do watercolor painting, even though I suck at artistic abilities, and adult coloring with coloring pencils. I'm not amused by this but I'll give it a good go and hopefully it will help lower my own stress levels from my own crap in my head going on. I go for a heart stress test next week just to be on the safe side of my life. I wanted a full blown check up for blockages due to hereditary issues with cholesterol crap in my arteries. Ok ok I'm shutting up. I haven't posted in a while because I'm not enjoying doing much of anything this past couple months. I hope everyone here is getting the support they need. God Bless ya'll.

[Kelt]

Saw this great little video on PBS Newshour this evening:



I was never around the elderly until my father died and I had to move my mother into an elder community. During and after her move I've had occasion to spend 1-3 weeks at a time there with her, (they have guest suites to let), I always have dinner with her in the dining room at a group of 6 friends table, we walk on the campus trails and bump into neighbors, go to her knitting group to be social, etc...

I've gotten to know many of her friends and neighbors to the point of visiting them as well when I am there.

I'm gaining an appreciation for what is really involved in aging in several different ways. I think this is invaluable information, and as much as I may carp about it sometimes, this time may be the best life lesson gift she could give me.

A little pre-Mother's day thankfulness.

[socialjustice_fsu]

Originally Posted by Kelt

Saw this great little video on PBS Newshour this evening:



I was never around the elderly until my father died and I had to move my mother into an elder community. During and after her move I've had occasion to spend 1-3 weeks at a time there with her, (they have guest suites to let), I always have dinner with her in the dining room at a group of 6 friends table, we walk on the campus trails and bump into neighbors, go to her knitting group to be social, etc...

I've gotten to know many of her friends and neighbors to the point of visiting them as well when I am there.

I'm gaining an appreciation for what is really involved in aging in several different ways. I think this is invaluable information, and as much as I may carp about it sometimes, this time may be the best life lesson gift she could give me.

A little pre-Mother's day thankfulness.

This is so apropos for my situation right now, too. Thank you for sharing this. I had no idea my life would detour this way as I become mom's full time caregiver.

[storyspinner70]

I care for my ex. He's 42, but has had a lot of physical issues as well as mental illness. He was abusive when we were together, and has no one else but a sister who is more mentally ill than he. He has Bipolar Disorder, Borderline Personality Disorder, Depression, OCD which makes him extremely paranoid, ADHD, dyslexia and a host of physical problems - diabetes and neuropathy because of it, hbp, lesions in his brain more than likely caused by the abuse he suffered as a child, etc, etc, etc. He's on roughly 20 separate medications a day.

Generally speaking, he's mobile and gets along pretty well on his own physically, though he tires easily. He is not very well educated in technology, and his dyslexia makes it hard for him to understand things he reads unless he spends a rather long time at it, so I end up taking care of all his bills and his disability check. He can't even write a check or use the ATM without me with him. He does his own laundry, mows the grass (but can't weed eat), pays for our cell phone bill, helps around the house. So, it's not a one-way street.

It's just so hard to deal with him sometimes. The paranoia especially makes for a lot of frustration. I feel "stuck" with him, because I am. I doubt anyone would be able to deal with him, so can't see him ever moving in with any of his girlfriends. Leaving him with no one to care for him is not an option, either. So here I am.

I'm always thinking how much easier my life would be. I try very hard to be patient and I'm failing. He's a better person than he used to be and is no longer abusive, but the stress of dealing with his mental illnesses gets to me. I get angry with him when I should understand. I found some online support places because I can't afford therapy right now with the monthly price of his medication and me having no insurance, and I need somewhere to work through my issues so I stop taking them out on him. I have times of depression, because he is a lot of what is keeping my butch and I long distance. It's so fucking hard. I love him like a brother and resent the hell out of him at the same time.

Women in my family generally live to or past 100, but all seem to have dementia or alzheimer's. My mother is 68 so hopefully I have plenty of time, but even that hits me sometimes - what would I do caring for both of them?

[girl_dee]

My mom is declining and its a hard thing to witness.

She's not the gentle, sweet old lady, heck she's not even old.

[dykeumentary]

Originally Posted by socialjustice_fsu

This is so apropos for my situation right now, too. Thank you for sharing this. I had no idea my life would detour this way as I become mom's full time caregiver.

And I sure didn't ever imagine that I would be my mom's caregiver!
I was the least likely of her children to even reach 25 years old, and certainly put as much distance as I could between myself and my family (and they wanted me far away too) back in the 80s.
But here I am.
It's very very difficult.

[Kelt]

Originally Posted by Kelt

Saw this great little video on PBS Newshour this evening:



I was never around the elderly until my father died and I had to move my mother into an elder community. During and after her move I've had occasion to spend 1-3 weeks at a time there with her, (they have guest suites to let), I always have dinner with her in the dining room at a group of 6 friends table, we walk on the campus trails and bump into neighbors, go to her knitting group to be social, etc...

I've gotten to know many of her friends and neighbors to the point of visiting them as well when I am there.

I'm gaining an appreciation for what is really involved in aging in several different ways. I think this is invaluable information, and as much as I may carp about it sometimes, this time may be the best life lesson gift she could give me.

A little pre-Mother's day thankfulness.

She did it!

In the first minute of this video, Flossie asks "Will this go viral?"

Update: As of tonight over 4 million views.

Made me smile big.

[girl_dee]

I am currently trying to arrange to work from home. Iknow my mom will need me during the day soon.

[socialjustice_fsu]

There are times here lately the only solace I find is through tears and prayer. Does anyone else feel this way? I know this sounds so foolish but I watched a rerun of Frasier late tonight. It was the last one of the last season, I think. I cried until I almost made myself physically ill. It felt like a thousand tears was shed over this stupid rerun...then I wondered if all the fears and unknowns had to find an escape and this was it.

[girl_dee]

Originally Posted by socialjustice_fsu

There are times here lately the only solace I find is through tears and prayer. Does anyone else feel this way? I know this sounds so foolish but I watched a rerun of Frasier late tonight. It was the last one of the last season, I think. I cried until I almost made myself physically ill. It felt like a thousand tears was shed over this stupid rerun...then I wondered if all the fears and unknowns had to find an escape and this was it.

For me i am.just scared for my mom. Glad you had a release

[socialjustice_fsu]

Originally Posted by girl_dee

For me i am.just scared for my mom. Glad you had a release

Dee, I am so scared for my mom, too. I have never known fear this deep and wide. I am thinking of you and holding you close. Please know that.

[Greyson]

dee and sj, thank you for posting so honestly about your experience as caretakers. I had an assignment this past semester to write a piece about my experience of losing my mother and now caretaking for my elderly father. I discovered some things about myself that were both uplifting and other things about myself that gave me pause. No matter what there is going to be "feelings" involved you cannot get around that.

sj, you already know this but I will say it, the tears are there because of circumstances going on now and from past hurts and disappointment. The miracle for many of us is that we can still find some sort of reason, faith, grace to continue on and in time even with some joy still in us.

Both of you are strong, and intelligent women. You have earned the respect and love of many. Although we have never met "face-to-face" I have had the experience of benefitting from your presence and words here in this online community. My thoughts are respect are with you both.

[girl_dee]

you know what is hard is when you give your parent all of the love and understanding, patience and financial assistance you can, and its more than has ever been received. My mom and I are in a good place now, but I know in the heart of hearts its only because I am the only one of her three children that has anything to do with her. If I had nothing to offer her, I would be rejected as well, and I think that has caused me to do so much for her over my adult lifetime.

[socialjustice_fsu]

Originally Posted by Greyson

dee and sj, thank you for posting so honestly about your experience as caretakers. I had an assignment this past semester to write a piece about my experience of losing my mother and now caretaking for my elderly father. I discovered some things about myself that were both uplifting and other things about myself that gave me pause. No matter what there is going to be "feelings" involved you cannot get around that.

sj, you already know this but I will say it, the tears are there because of circumstances going on now and from past hurts and disappointment. The miracle for many of us is that we can still find some sort of reason, faith, grace to continue on and in time even with some joy still in us.

Both of you are strong, and intelligent women. You have earned the respect and love of many. Although we have never met "face-to-face" I have had the experience of benefitting from your presence and words here in this online community. My thoughts are respect are with you both.

Dear Greyson, I am so grateful for your post. It helped me keep going today. I am learning a great deal about myself and sometimes it does give me pause. As I have cared for my patient's in hospice over many years this is so very different. I am on the other side now. While I am so physically and emotionally weary I have certainly been enlightened. I find the tears (sometimes) to be some sort of cleansing ritual - for lack of a better description. When I moved home to mom's I walked into a less than ideal situation. I suppose I was in denial for months. But that is the past. I can only move forward. I do find some solace through prayer and meditation.
You have no idea what your thoughts have meant to me. You are wise, insightful and will be one of the best hospice chaplains to walk this earth. Go forward with your passion...not many of us ever find it.
Peace, my friend, peace.

[Andrea]

As my honey's diseases progress, I have taken on more of the responsibility but I know I need to take on more. This is hard for us because for the 10 plus years we have been together, I have been the income earner and he has taken care of me.

Now I need to learn to cook (it has been years) and find the energy to work, keep the house, etc. And I want to do it gently so he doesn't feel guilty about not being able to accomplish what he used to.

I feel like I am walking a fine line and am very surprised there aren't local support groups for care givers.

I find being his memory is one of the most energy draining parts of taking care of us.

Thanks for giving me a place to vent.

[Kelt]

Originally Posted by Kelt

Whew! Taxes.

Just short of a year ago in a huge karmic swipe, my father died on tax day. You had to know him to get that, but to say it was ironic is a major understatement in a Monty Python kind of way...

Today the E-file happened, 7 federal and 2 state tax returns filed and the only one of them that needed a 90 day extension (estate) was also completed. While I'm no accountant, I was the one who rescued the three carloads of paperwork and brought it all back to my place for sorting so that I could spend the last six months looking for and providing the answers to the endless stream of questions from 3 accounting firms.

I'm incredibly lucky in that I have found some really good "on ground" caregiver help and her RN is in a position to hire and manage other care providers to spot changes and help her with things that need helping with. (An ever changing menu)

Update:

Yeah, letter from the IRS today, nothing worrisome in particular, just a hold up to close the estate. "We're holding your refund until we finish reviewing your tax return." I wonder which one they're talking about.

I am so grateful that the on ground people I have for mom are on the ball. A couple of weeks ago they noticed her surgical site looked weird. I had them take her to the surgeon who was mystified and said it was probably a change in blood flow. OK...

4 days later another caregiver said it was changing and sent a photo to her (private) nurse. He promptly booked/took her to her regular Dr who examined it under UV in a dark room and started her on an antibiotic course. Nobody really knows what's going on, but we're all hoping for "small subcutaneous infection" to be remedied in a few days. We'll see...

I have a yard full of contractors and jury duty in three weeks (which I postponed for the surgery 5 months ago).

Suitcase handy...