Caregivers... taking care of yourself, as well

[ppearl214]

Hi all,

Ok, I'm in the "newbie" stage of being a Caregiver for a non-AN situation..... so, in my intial research, folks are reminding me that I, as  a caregiver, have to make sure I take time for me along the way. If anything, my responsibilities as a caregiver are going to become increasingly difficult.

so, my question to the Caregivers here.... how do you make sure you are taking care of yourselves as you go through the acute stage of caregiving?  If you are monitoring your loved one very carefully (ie: taking daily meds, bandages, shopping, cleaning, etc), how do you take care of yourself? 

thanks for sharing. ..... more helpful than you know!
Phyl

[sgerrard]

Hi Phyl,

I am just starting on a new experience as assistant caregiver as well. My sister will be the primary, my brother in law the patient. He is staying with me now for some medical procedures at OHSU. This is a long term situation, and even though my role will be small, I can already see that it will take something out of me. It is not easy to see a loved one in a serious medical situation.

I wish you strength as you go forward.

Steve

[leapyrtwins]

I'll be moving into the caretaker role myself next week.

My mom is having back surgery on Monday and while my dad's her primary, I'm secondary.

The hospital is also much closer to my house than to theirs, so at times I may just turn into the primary.

I wish strength for all of us.

Jan

[suboo73]

Phyl, 

I am no expert,  but in my limited experience, i had to learn to walk away, let others help during the caregiving time, so i could recharge - even if just for a short time. (If this is possible.)
While i was thinking about how i cared for my then 6 year old daughter, who spiral broke her femur, was in traction for 2 weeks in the hospital, then 8 weeks in a body cast at home, i had to yield to my husband to help her take her 1st bath after the cast was removed, as she was scared to pieces, crying and was so afraid (this was my child who LOVED water!)  It was hard.
When that same daughter, a teenage, had a terrible car accident and broke both her legs, i had to let my best friend come and sit with her while i left my house to tend to my other daughter and members of my family.  It was hard.
And likewise, with my younger sister.  After hip replacement surgery that failed (due to incorrect manufacturing of the replacement part), i was the closest relative 'on duty' to help during the holiday season so the rest of my family could return to their homes and recharge.
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I learned a lot from these experiences and was so glad i was able to help when i could.
It is definitely a challenge, but i know you can do it!
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So i am reminded of this, The Serenity Prayer:

God, grant me the serenity to accept the things I cannot change;
the courage to change the things I can; and the wisdom to know the difference.
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As Jan said, "I wish strength for all of us."

My thoughts and prayers to all the caregivers.
Sincerely,
Sue

[vossman]

Phyl,

I don't have a lot of experience, but I can tell you that you have to take care of yourself by giving yourself a break once in while.  Since Anissa and I have been home we have been flooded with support with friends and family who have been bringing meals and offering to help with anything.  We have found it hard sometimes to accept the help that is offered, but the reality is that by someone offering to make a meal or run an errand it is one less job you have to deal with.  I know that from my end it has been really beneficial to accept the help even though it is hard.

If there is someone who you can trust to be with your loved one for a couple hours or so every day that will allow you to get some rest and get away from the situation so that you can clear your mind.  It might sound silly but that little bit of reprieve might be what you need to pull you through this.  Hopefully you have someone that could do that for you until you get through the most intense part of the care giving journey.  Bottom line is use the help to help yourself as well as your loved one.

Thoughts and prayers going your way as you begin the journey.

Chris

[sgerrard]

I know that from my end it has been really beneficial to accept the help even though it is hard.

Chris,

You know, we have made this point for patients on numerous occasions. It is really good that you point out that it applies to caregivers as well. Many of us, including me, are inclined to do it all ourselves, but ANs, and other serious medical conditions, have a way of forcing us to see that it can't always be that way. And it turns out that asking for help and receiving help is a good thing for the heart and soul.

Steve

[Kaybo]

Phyl~
While I have not been the "main" caretaker yet, I have been the "alternate" many times so that my sweet mom could get a little break.  Bless her heart, she was a MAJOR caretaker for many years - first, for my father with Alzheimer's and then my grandmother as she aged (& had a stroke - at my house!) and for an aunt & uncle that had no children in between.  I tried to be there and offer respite so that she could get away and recharge.  Her brother (who is a bachelor) was also excellent about coming as often as he could from NY to help her with my grandmother.  I know that you don't have kids, but for others who do, this was a biggie for us because my mom has always been so involved in the lives of her grandchildren.  She did not want to put my father in a home and kept him at home WAY too long.  Finally, my brother told her that she was depriving her grandchildren of their time with HER - not b/c she was not spending time with them (that too) but that she was putting too much strain on her body physically and then she wouldn't be able to do as much witht them in the long run.  Some may think this is selfish of us, the kids for our children, but it is what finally made sense to her.  Daddy went to an Adult Day Care while he was still at home to give mom a little break - we either took him or he rode a bus - I helped with the carpooling - its my life, what's another stop?  Also, he had wonderful friends from church that would come get him for coffee or for a hamburger every once in a while - of course, this was before it was so bad we had to place him in a home.  Let others come & take them out - even if it is just in the backyard - it gives you a break, but THEM a break too!  The most important thing I have to say is to know that if you are becoming the caretaker, chances are that this situation may not have a perfect ending and you have to be ready for that.  Know that things may occur THAT ARE OUT OF YOU CONTROL but it is not your fault and you have not feel guilty about it.  I was taking care of my Grandmother so that my mother could go visit my brother - apparently she got up in the night & fell - but didn't call out at all because she didn't want to "bother" us.  She laid in the floor all night - and consequently, aspirated fluid into her lungs - we also figure that she had another stroke then that affected her speech (she didn't speak for 3 months - she was in the hospital & rehab for months and then went to a home).  Obviously, I felt VERY guilty that this whole thing was my fault - but you know what?  It wasn't...it took me a long time to come to that.   I mean I still feel VERY bad that it happened (especially at my house) but I can't carry that guilt around with me and still try to be a good mother to MY children.  I don't think I verbalized that very well, but I hope you get what I am trying to say...

K

[Tamara]

I have a severely disabled daughter who is 11.  I've also had each of my parents staying with me for a time that they were recovering from falls. 

My advice:  if this is short term, just dig in for it.  Take an hour for a mental health break if you need it - get out in the sun, read a book, watch Comedy Central.  If this is long term, you would be best to find ways to incorporate the "patient" into the routine of the house.  If possible, get out with everyone - after my AN surgery, while I was still weak & wobbly, my husband took the whole family to the botanical gardens - got a wheelchair for me and rolled me through.  It was lovely, and great therapy for everyone.  If the "patient" is truly bedridden, it may be harder...then take turns staying home, but try to get everyone involved in the same activity at times if possible - jigsaw puzzles, just conversation.  Also, remember what it was like to be a patient, to try to involve the person.  Maybe just ask for advice on some area of expertise - it's nice to feel needed, no matter what the circumstances.

Best wishes to all,
Tam

[ppearl214]

truly.... to you all... thank you! Mine is a long term situation and the suggestions, the wisdom and inputs are so very truly appreciated.

Phyl

[SML]

Phyl,

I would add that you try to maintain as healthy a lifestyle as possible. Eat good foods (apple dumplings count I think  ), don’t skip meals, get your sleep, and accept that help so you can clear your head.

Scarlett

[ppearl214]

Scarlett

thank you! I try to do so even without this issue now going on... as its imperative to my overall health issues that plague me (you will see on Sunday).  Great suggestions and regardless of anything that goes on in our lives..... true words to live by! Thank you again and can't wait to meet you Sunday!

Phyl

[SML]

Thank you again and can't wait to meet you Sunday!

Phyl

Right back at ya!

Scarlett

[Jim Scott]

Phyl ~

I'm late to the thread but just want to mention that I've found it necessary to be a caretaker for Tina on various occasions, usually following her surgeries.  Although she never required constant 24/7 care, there were times when just getting up from a chair was too much for her (spinal surgery) and I played 'waiter'.  It wasn't that hard.  In late 2007, she had foot surgery (a neuroma was removed).  This meant that she had to use a wheelchair for a few weeks, and although we obtained a folding wheelchair, getting around was still a challenge, especially lugging the chair in and out of our car trunk, but we managed.  She was walking again in a few weeks and I was glad to see the last of that wheelchair (and so was Tina).

I can recall that in 2005, following some serious spinal surgery involving having titanium rods attached to her spinal column, Tina's long incision didn't close and heal properly at the very tip.  That required numerous doctor visits (a 60-mile round trip) and twice-daily applications of medicine on the wound (by me) as well as visits from a VNA nurse to keep the incision clean and inspect it.  It was fine.  The nurse complimented my 'work', which was rudimentary, at best.  Tina and I fell into a routine and it became quite 'normal' to follow the incision-care ritual every day, until the wound finally closed and healed.

Although my caregiver experience with the lovely and gracious Tina wasn't necessarily exhausting, it was a change in our routine and required some patience from both of us.  I may not have been the perfect caregiver but she was always an excellent 'patient'.  I realize my caregiver experience may seem insignificant compared to those performing constant, almost 24 hour care to a loved one, but for those dealing with a temporary situation, as I have, just heed Tamara's pertinent advice and 'dig in for it'.  If you care about the 'patient', be they spouse, parent, sibling, whatever, it makes it easier.  Lots of patience and really wanting to help is crucial, as well as making some time for yourself and, as Scarlett advised, take care of yourself, too. 

Jim

[NancyMc]

Phyl,
I'm sorry that you will have added hardship in your life.  My only thoughts at this time are to reap the rewards of helping others and get perspective, aka fresh air, frequently.   It is fulfilling to give to those in need.  Those who take and don't give miss a wonderful part of life.  And get away from the situation, escape to the outside world, don't just take a nap, leave it behind you, put it out of your mind whenever possible.
I wish you the best in this new phase of your life.
Nancy

[ppearl214]

Jim, thank you! Getting to know Tina and comparing notes with her helps me to truly gain perspective as to what you all have been up against, whether in her care or during your AN journey. I thank you for sharing what you have as it definately helps  with insight (as does everyone elses comments).

Nancy, you hit much on the head!  I am trying to learn how to reap the rewards in this new challenge and try to make the best of it.  I am finding an overwhelming feel... and a general "guilt" feel by not being able to do more than I am now.   I am also reaching out to a local support group (much like this forum, eh?) in trying to educate myself better about the situation and to learn ways to best deal with this new journey that lays in front of me.  There is limited family support locally for me, so much of it falls on me in making sure things go well.  Trying to make sure I take time for myself, but has been difficult since much of my free time is dealing with the situation... or watching you all here on the forums!

Thank you all for sharing these words with me! I know I have the mental strength to endure... I guess its just trying to find ways to keep up the mental strength when it wants a day off (for our situation, to take a mental day off is VERY challenging!)

Thanks again!
Phyl