1. < Caregivers

Longtime caregiver looking for support and coping tips

Posted by tim1028 @tim1028, Mar 20, 2022

I've been a member of Mayo Clinic Connect for several years, but this is my first time at this group. Here's my situation: I have been a caregiver for my parents, 4 years for both and 7 years for my mom alone ( she died in December). I also have been a caregiver for my wife for the past two years because of incapacitating Chronic Fatigue Syndrome mixed in with Long Covid symptoms. It has been helpful to see a therapist weekly, but I feel emotionally exhausted and feel like I have little in reserve to give. I work hard to take care of myself as well, but this is easier said than done. My reason for posting here is for support and encouragement from others in the same situation. And,too, perhaps to pick up some useful tools to cope with the difficulties of caregiving.

Interested in more discussions like this? Go to the Caregivers Support Group.

tim1028 | @tim1028 | May 12 6:37pm
In reply to @tapestry4245carton "We are in the midst of a complex stage of "treatment" of my spouse's prostate cancer..." + (show)
@tapestry4245carton

We are in the midst of a complex stage of "treatment" of my spouse's prostate cancer treatment much of which has happened at Mayo but some in our home state as well. Coordinating these is very difficult and has been a nightmare at times.

Most recently my spouse had a massive surgery at Mayo for what amounts to damage caused to his digestive system caused by radiation treatments. The surgeries took 7/8 hours in November and there were and are serious complications plus he has lost 80 Lbs.

So currently he is at end of Medicare deadline at a facility for one of many hospitalizations including a bout with septicemia which likely was caused by one of his many surgical procedures since August 2022.

My problem is "bumping up against rules" at facilities. I have found that at Mayo and all the other places where he has been treated have RULES and REGULATIONS that are heartless and cruel in my view and lack any compassion and there is little docs or hospital staff can do especially in light of the COVID aftermath.

We literally feel like we are "wandering in a wilderness" half the time in that all the staff everywhere are " burdened" by rules that prevent I believe there from being a true recovery of patients and create a massive burden on caregivers/family that is much worse than in prior times when this issue has always been present to some extent.

So what IS the solution? I am certain we cannot be the only ones experiencing this complicated and actually stressful to caregivers, situation? Communication in missing because if they told you how rule bound they are people might not get treated and instead Placating rules.

Jump to this post

You have a very tough situation. Prostate Cancer treatment is difficult enough (been there, done that) but with all the terrible side effects, complications and other issues, it sounds like a real nightmare. The solution for me has been Acceptance I may not like it, but I have to face reality as it is. The next step is what can I do to solve the problem, or not? Seemingly intractable situations like you face can sometimes be approached by asking for help from hospital staff, including social workers, who are there to sort out some of the issues you address. Your post is more generalized and as Becky has mentioned, specific examples may be more useful to suggest remedies.

REPLY
kaylin7 | @kaylin7 | May 27 6:19am
In reply to @tim1028 "Reading this thread has been comforting to me in knowing others are in the same boat...." + (show)
@tim1028

Reading this thread has been comforting to me in knowing others are in the same boat. And I have found some useful coping suggestions.

Part of the difficulty in caregiving for me is the changes that occur. Although it's the same in some ways, the varying demands and challenges can result in increased stress: physical, emotional and mental. It's kinda like taking a raft trip on the Colorado river through the Grand Canyon. The water can be smooth and peaceful in one stretch of the river, then change suddenly to turbulence when going thru rapids.

I've thought about the objection to the advice "Remember to take care of yourself" Perhaps a better way to address this would be to ask the person questions about how they are coping, what things they are doing to take care of themselves, rather than hand it out as a dismissive command, no matter how well-intended. Asking the person questions, gives them the opportunity to respond as they wish and personalizes the conversation by showing your genuine interest in their welfare.

Jump to this post

Take care of yourself so you can care for others ❤️

REPLY
hikingcaver | @hikingcaver | Jun 28 7:52am
In reply to @IndianaScott "Good morning, @naturalebyjas You are spot on! Caregiving seems to present daily challenges of one kind..." + (show)
@IndianaScott

Good morning, @naturalebyjas You are spot on! Caregiving seems to present daily challenges of one kind or another, often without respite. I shared your feelings of not only being challenged by the chores of caregiving but also the constant and terrible thought of losing my wife. I always knew the worst day of caregiving was going to pale versus the days without her.

While I know hints and tips don't work for everyone, but one thing that helped me through these thoughts and fears was to focus on "one day at a time". I had to retrain myself. Having spent my life looking towards, and planning for, the future, I had to learn to just be focused and OK with the day at hand. If I had my wife that day, I had to learn to be happy and not worry about what tomorrow might bring.

Please remember, no caregiver is truly alone! There are millions of us out there who are, have been, or will be caregivers.

How are you doing today?

I wish you continued strength, courage, and peace

Jump to this post

Thank you
I find he hardest part is telling others how i actually am feeling - LOST, helpless, trapped,
and having an impossible time giving up gardening, and building, just don't have the time any more and am starting to see am running out of money slowly with many years left..

One day, one minute at a time and lots of tears

thank you all who share
feeling like I have already drown
Don

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 28 1:29pm
In reply to @hikingcaver "Thank you I find he hardest part is telling others how i actually am feeling -..." + (show)
@hikingcaver

Thank you
I find he hardest part is telling others how i actually am feeling - LOST, helpless, trapped,
and having an impossible time giving up gardening, and building, just don't have the time any more and am starting to see am running out of money slowly with many years left..

One day, one minute at a time and lots of tears

thank you all who share
feeling like I have already drown
Don

Jump to this post

@hikingcaver I see you have been a member her for over a year. Has reading any of the posts here in the caregiver group, offered you any tips?

Can you perhaps have someone [friend or family member] help out with some of the caregiving, to give you a respite? You deserve to have some time for yourself, otherwise it is too easy to lose yourself in the daily things! Can you source out how to barter for some things and reduce costs?
Ginger

REPLY
gloro | @gloro | Jun 29 9:17am

Dear Don, It sounds like you're running on empty, and I can relate to it. We are golden oldies who remarried 25 years ago in our 60's. Along with anniversaries, we have celebrated surviving prostrate cancer twice, two life-threatening bowel obstructions, two major back surgeries, knee replacements, colon cancer with more major surgery, stays in nursing homes for us both, and enough rehab to make us Olympians. There has been depression and moments of whining, "Why me?" The advice to take care of yourself from well-meaning people can sound silly (or even mean) when pressure is unrelenting. Still, we need a well to go to refresh ourselves. Try gardening in containers. Make your woodworking projects smaller. I had to give up large art projects for small collages. Long walks have become writing sessions in 5 or 10 increments. Although you sound much younger than us, we also have money worries. We are challenged with how long it will be possible to stay in our home. If we must leave, his dementia will reduce him to a guy sitting in a chair all day in a nursing home, and we cannot afford two slots in that home. So we will have to separate. Right now, all I have is the energy to do what I must for the here and now. Call in reinforcements. Find the family and friends who are willing to give you some respite. Talk to that therapist about practical solutions. Please do not keep it all in trying to play a superhero. We are only human, and communicating our needs to others more than likely will surprise us that we were never alone. I wish the best for you. GloRo

REPLY
karen8 | @karen8 | Jun 30 3:09pm

Wow! This hits home - you just said what I keep feeling and posts I look for . I still help care for my 88 year old mother with cognitive issues from a stroke and past illness but she lives somewhat independently in senior facility. My fiance has severe long covid and I feel like I’m soo no g in circles trying to find answers or the “ next better supplement” ! I agree with trying to care for ME but that is hard …. Emotionally tired and sad . Best to you . Encouraging words are always welcome !

REPLY
jmclemmo | @jmclemmo | Jul 1 8:46am

Does your insurance company offer an advocate program? Turns out ours did for people who were costing the insurance a lot of money (that's not how they worded it, but essentially that's what it meant). We got a nurse assigned to us by the insurance company who could do a lot of the calling around/checking rules/seeing if there was an exemption/handle the conversations between the hospital and the insurance company for us. I was able to turn a lot of the phone calling and aggravating administrative follow up over to her, which was wonderful, and she spoke the language of both insurance and hospitals, so she got through much more effectively than I did!

REPLY
jehjeh | @jehjeh | Jul 1 12:15pm

After months of convincing myself that I needed help caring for my husband with dementia, I finally contacted an agency. Yesterday was our first visit. The caregiver was a very kind and understandings young man. However, my husband couldn't remember us talking about him coming to help me around the house and to be here just in case I needed to leave for a bit. That's how we framed it.

He lasted 45 minutes.

My husband was so angry with me for not telling him (Though we've talked about it daily, even that whole morning) that I had to ask him to leave. He did sweep, dust and fold towels so it wasn't a complete loss. But I still have to pay for 4 hours of his time.

I'm so discouraged and tired today that I'm hesitant to move forward with another caregiver later this week. Maybe afternoon will be better than morning. I'll try again but just needed to vent. I hate to keep burdening my friends with my frustration. Hope you all don't mind my rants. Maybe I'll have good news to report soon. Fingers crossed.

REPLY
3 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 1 6:12pm
In reply to @jehjeh "After months of convincing myself that I needed help caring for my husband with dementia, I..." + (show)
@jehjeh

After months of convincing myself that I needed help caring for my husband with dementia, I finally contacted an agency. Yesterday was our first visit. The caregiver was a very kind and understandings young man. However, my husband couldn't remember us talking about him coming to help me around the house and to be here just in case I needed to leave for a bit. That's how we framed it.

He lasted 45 minutes.

My husband was so angry with me for not telling him (Though we've talked about it daily, even that whole morning) that I had to ask him to leave. He did sweep, dust and fold towels so it wasn't a complete loss. But I still have to pay for 4 hours of his time.

I'm so discouraged and tired today that I'm hesitant to move forward with another caregiver later this week. Maybe afternoon will be better than morning. I'll try again but just needed to vent. I hate to keep burdening my friends with my frustration. Hope you all don't mind my rants. Maybe I'll have good news to report soon. Fingers crossed.

Jump to this post

@jehjeh How totally dispiriting for you! There are 2 things that come to mind that you could try. #1 is to have another conversation about having some help because you can’t do it all and if you get sick, who will help him? #2 hire the young man for another shift and have him help you, but be sure your husband sees him and how helpful he is. You may have to talk with the young man before hand, so he understands and will cooperate.
How do you think your husband will react?
Just some thoughts

REPLY
1 reply
kellysuebarker | @kellysuebarker | Jul 1 9:57pm
In reply to @IndianaScott "Hi @tim1028 Nice to have you here in the Caregivers group! Glad you posted. I'm Scott..." + (show)
@IndianaScott

Hi @tim1028 Nice to have you here in the Caregivers group! Glad you posted. I'm Scott and I was my wife's caregiver during her 14+ year war with brain cancer. Your post brought back many feelings from those years for sure. Being exhausted and empty was one of the toughest aspects of caregiving for me. It is a relentless undertaking and I wish I had some magic potion to share with you.

My dad was an alcoholic and one of the things that helped me with caregiving was from his 12 Step program and that was "one day at a time". I had to refocus my life from longterm to one day at a time. That helped me with the feelings I was having of being overwhelmed.

Also I had to teach myself that noncritical aspects of daily life could be allowed to go to the wayside without feeling any guilt. I learned to get along with a constant pile of laundry to be done, shirts that no longer got ironed, and looked at dust bunnies as a new kind of pet rather than a pest to be worried about.

I also printed out and taped a quote up in our kitchen which says "Courage doe snot always roar. Sometimes courage is the quiet voice at the end of the day that can only manage to whisper 'I will try again tomorrow.'" It helped me realize just trying was often the best I could do.

I had to chuckle at your comment about taking care of oneself! If I had people tell me that once, I had them tell me that a million or more times -- and every time they did it made me beyond crazy! Do people think just because a person is a caregiver they don't want to take care of their own needs too? I support that comment might have made them feel like they did something, but it surely didn't. At least for me, it didn't!

Caregivers can only do what they are able to. None of us are superman or wonder woman.

I am happy to answer any questions you might have about specific things or aspects of caregiving to help!

Strength, Courage, & Peace

Jump to this post

It's just so heartbreaking and exhausting.... 😭. Sometimes rewarding but almost of the time I feel so broken like I can't do anything right. My faith and prayers sustain me...

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.