Stress of Caregiving - Learning to Cope & Needing to Vent

[werdsmith]

I also have an elderly relative under roof, I know and appreciate you guys for what you do/ have done. Blessings

 

[cripple92996]

bghb

Your relative is blessed to have you. As a professor in a wheelchair, whose situation is mild compared to others, I tell you frankly, I don't think paid folks give two hoots. Family and friends have kept me sane

 

[TheOldWidow]

There are some really good folks that work in health care. I don't believe they get anywhere near the money they deserve for caring for dementia patients. But friends and family are always what help bring a person through. Strong bonds.
I also think you should change your name. You might have problems that prevent you from walking, but you are also a person, not defined by being a cripple. You are doing yourself a disservice.

 

[cripple92996]

fdf

I meant it as a defiant sneer against experts who wanted to limit me. But you have a point

 

[TheOldWidow]

There are always people eager to have the world lined up like bricks in a wall. I say, be the rock wall with the very large, irregular rocks, they are always more pleasing to the eye and stronger than bricks, all of the same size.

 

[NightL]

I'm sad to report that my mother's battle ended at the beginning of November when she passed away with me by her side. I have absolutely NO regrets, but the road to to my own healing and learning to live again has been quite rocky.

I'm grateful for my fellow Litsters and your support!

Sorry to read of your mother's passing.

Your journey may yet be a road much longer than you expect. Hopefully not - but still do look out for yourself and don't hesitate to seek professional guidance if things feel in a disarray.

In times of great stress we can call on inner reserves that were otherwise unknown. When the situation changes and we don't have to be on heightened alert anymore we hope everything will just switch back to normal, but all that stress may have had a greater lasting impact than you would wish for.

I look back on my situation and realise today that I suffered PTSD - I really should have sought advice and help at that time. I was traumatised by the events. It is over 15 years later since my carer role finished and I still can have periods of high anxiety. I understand what is happening and can look at it logically - but still resent that cloud when it comes. The intense stress I went through back then, over a period of years, still has an impact to this day.

Your situation may well be very different - but I stuffed up looking after myself. Ha - I was the carer - of course there was nothing wrong with me - yeah no.

If your anxiety levels become erratic - if you feel you are not coping well with just ordinary life activities - get help - don't put it off.

Yeah - I know that all sounded a little bleak - IF you identify with any of what I have written - well just don't attempt the journey without guidance.

 

[LizVegas79]

* subscribed *

* soooo subscribed *

 

[Downundergirl79]

I just found this thread. And I've read most of what you have all posted and like everyone else it's hard as hell doing it. And most of the time you do it by yourself. So every caregiver should be applauded for the work we do..

I've been my partners caregiver for 8 years just about. On top of that I always work in an aged care home as a caregiver. So I know how the mainly wives feel relief when they stick their husbands in a facility. It's not because you are finally free, because that never happens. It's just knowing that you are no longer alone in the struggle.

Anyways with my partner we are both only in my our late 30s and after 8 years of doing everything on my own, medications, personal care, dressing changes, meals, cleaning up all sorts of yuckiness, travel to treatments and Drs appointments and we live 3 hours from his renal specialist. I finally have a friend who is helping out. Who has actually said..." you need a break, let me do this for you" but the actual burden of asking someone to help is too much at times.
Venting is hard because I feel like it's just the same vent over and over again. Drs don't listen, nurses are c you next tuesdays and hello why won't my partner actually do something to help himself when I can't do it!!!!

Hahahso that's my little rant..
I'll check back often

But I hope everyone is coping as best as they can in what ever situation you may be in x and it's ok to feel "like I can't do this anymore"

 

[tryn2Bgood]

Good evening, All!

I apologize for the radio silence, since I started the thread several months ago.

Thank you to everyone who reached out to me on the thread and by PM. Your support and kind words were comforting in my time of need.

I'm sad to report that my mother's battle ended at the beginning of November when she passed away with me by her side. I have absolutely NO regrets, but the road to to my own healing and learning to live again has been quite rocky.

I'm grateful for my fellow Litsters and your support!

First I would like to offer my condolences and thankful appreciation that you are one of the special people who take on the caregiver role. Sometimes we never really know how much that service means to the one being cared for, but I'm positive it's appreciated, valued, and treasured, even if they can't express that to you.

I've experienced the same type of situation being the caregiver. It can definitely be stressful for sure. And exhausting. There are times you question your capabilities or strength. But it's amazing how much we truly have to give when called upon.

My advice to others would be don't feel bad about yourself if/when you feel overwhelmed. Don't hesitate to ask for help from those around you when you need it. Always take the opportunity for a short break when help is offered. But also, try to look past the negatives of the situation and discover some of the positives.

Knowing you're providing great comfort and care for someone you love is a big deal. There's a kind of peace of mind in doing everything you can to make a difficult circumstance easier or more bearable for someone who needs you. And if possible, enjoy the time with each other when the medical/physical aspects aren't pressing. Take time to still laugh, talk, reminisce, share thoughts, and treasure the precious time you still have with them. I know some medical conditions might not allow them full participation in all things, but that doesn't have to stop you from creating some pleasant moments for you both.

Although nothing can take away the hurt of losing someone you love, in the end, you won't regret a single moment you gave to caring for them. My heart and best wishes goes out to everyone who has, or is, dealing with this.

 

[SassyButShy]

I understand the demands of caregiving. I've taken care of a ptsd suffering veteran husband for years. Last year, I was no longer able to afford the assisted living facility where my 94 year old, wheel chair bound father with dementia was residing. He was also not getting the attention he needed. So, I rented an RV and drove 23 hours to Tucson to bring him home comfortably.

He's lived with us for a year thus far. Physically, he's in better shape now that he has more attentive care. Mentally, he's advanced to the later stages of dementia. No longer knows who I am, is combative and verbally cruel (a typical case, it's not him ... it's the sickness), sundowns/hallucinates regularly and is extremely high maintenance with his incontinence, unable to self-feed, etc.

I also work full time in a stressful executive position, and I'm guardian of an intellectually disabled adult sister in another state. I. Not trying to solicit pity, just giving a picture of why all of you have my empathy.

It's difficult. And no one knows how hard it is until they live it themselves. We all have exclusive entry to a world no one wants to live in. For many, it goes on for years. I believe I'll be one of those "many" as my father's relatives often live to 100 and he is physically doing fine, himself. And my husband is in good physical shape as well.

How to cope? There is a GREAT Facebook group that is called Purple Sherpa. Purple is the color for Alzheimer's and Sherpa is a word for guidance. It is a closed site, allowing one to vent or express without their friends seeing it. The only people who are on this site are those in the same caretaking boat as you are. It offers great guidance and u believable support even if choose to just lurk and not respond. The site has made a positive difference in my life and it might help you as well. I hope you check it out.

Another tiger way to cope is to find wYs to indulge yourself. Ice cream at the end of the day. Coffee early in the morning in an especially beautiful, fragrant spot of your garden, a midnight dip in your hot tub or bubble bath.

And meditation. Quiet peaceful meditation. I joined a MBCT class (mind, body, cognitive training) that showed me self care ways to cope with my world.

It's not perfect. I still cry. Burn with resentment. Ache with frustration. Feel hopeless at times. But I know I'm not alone. That Purple Sherpa tells me that. And I know that honoring my Father and my husband is my loving choice.

We arely learn early in the game why the Higher Power or afate deals us a particular hand, but I have faith what I am living through will get me somewhere I am intended to be.

I hope this helps you. I wish you peace.

 

[MaryanneB]

I'm a retired nurse and I cared for my husband for the 14 years he battled heart disease. The doctors I worked with were like mother hens and pushed me to realize that trying to save the world makes you unable to prioritise the things you have to do.
Take care of yourself or you aren't any good to anyone else.
Grief? Try GriefShare.org (I think it's org). It made me realize that my relief upon my husband's death was not selfish. Grief started the day he was diagnosed.

 

[SassyButShy]

I'm a retired nurse and I cared for my husband for the 14 years he battled heart disease. The doctors I worked with were like mother hens and pushed me to realize that trying to save the world makes you unable to prioritise the things you have to do.
Take care of yourself or you aren't any good to anyone else.
Grief? Try GriefShare.org (I think it's org). It made me realize that my relief upon my husband's death was not selfish. Grief started the day he was diagnosed.

Yes. "The long good bye."

Sorry to hear about your husband.

 

[LIVINRFANTASIES]

Denny & Dollie

I don't know what to write here. We just want to say thanks! I did read all comments and basically want to thank everyone of you giving care when it is so badly needed.

My wife has mild short term dementia. Our oldest and dearest friend also suffered beginning from around the same time we found out my wife has it. Unlike my wife Pat got much worse way too suddenly until she was a vegetable.
Our best friend, her husband, cared for her until near the end when it became too much for him. Don had several caregivers and nurses come in often those last weeks. It trully was a big help.

My wife is somehow holding on and actually doing quiet well. Sure, she forgets simple things yet tells me other things when I forget what prescription I want to tell about over the phone, etc.
The scary thing for us is seeing our very best friend go through with dementia and know my wife can change tomorrow. For those reasons I went thru medical treatments I'd skipped. There would be no one to give her her prescriptions and help with meals and life. So, in my simple way, I am now a caregiver.
Our adult children already told us my wife will go in a nursing home when I die. I can't die first!

We've met many live in caregivers and when the patient passes it's never easy for them, even not being related.

Bless each and every one of you. Keep in mind you need to take care of yourselves also.

 

[LIVINRFANTASIES]

Denny & Dollie

Double