Being a caregiver is hard

[Bill Peckham]

On August 9th my Mom had a stroke. She had valve replacement surgery scheduled for September 2 (I was planning to be in Chicago before and after the surgery) the thinking is the bum valve(s) kicked off a piece of calcium/plaque which resulted in the stroke. I drove here from Seattle, getting here early morning the following Tuesday. Mom got out of the hospital/rehab on August 29th - since then I have been here caregiver. Fortunately she did not have significant impact from the stroke - she lost a lot of weight (that she didn't have to start with) and the bed rest in the hospital weakened her but it feels like her heart has a gun pointed at her brain. That at any time another piece of whatever could break off the faulty valve and cause a worse stroke. She has the surgery rescheduled for 9/23, until then it's my shift and I spend a lot of time fretting.

This has been tough. I don't have a caregiver as such for my CKD, I take care of myself, which I am still doing, but to take care of someone else has been a real eye opener. The bombardment of information - what do I know about heart surgery. Trying to decide how much help to give. When to peep up during doctor visits. The feeling of being helpless to help and feeling unappreciated for what the impact has been on me. I've found the whole experience very difficult.

Throw in dealing with my brothers and my Mom's scores of friends - many of whom find calling "easier than reading that blog" (I started a caringbridge site to minimize repetitious phone calls) - and I'm worn out. I really just want to go home, but I feel guilty for planning to drive back once Mom is out of the downtown hospital and in rehab closer to home. My Aunt will stay with her after she leaves rehab and I know I can't move here but I worry what will happen if things don't go well. Then what?

In many ways I am finding being a caregiver harder than being the care receiver.

[okarol]

Your mom is lucky to have you Bill. Can you get some more help? It might be helpful having someone come in for a few hours - even a housekeeper, not necessarily a health care helper - so you can sleep or exercise or just zone out for awhile. Worrying about someone else is very stressful - and not knowing what comes next means you're always in perpetual limbo.

Stop answering the phone! Jeez people are so selfish - tell them you're turning it off. Read the damn blog!

Feeling guilty but wanting to get away is normal - you'll do what's needed when the time comes.

Hang in there. Sending you and your mom hugs! 

[petey]

Bill,
I agree with all Okarol wrote -- she's such a smart cookie! 

I'm sorry about your mom, and I know how overwhelmed -- and sometimes frustrated -- you feel over this.  Being a caregiver is a tough job and "given" only to those of us who have what it takes to do the job right.  Just do what you can for her when you can, and remember to take care of yourself, too.

Hang in there!  Thinking about you and your mom!

[2_DallasCowboys]

Hi,

I totallt agree with OCarol and  Petey.
And yes, people can be a real pain in the
I remember when hubby was in the hospital and
I would get home after being there all day and evening-
honestly, the last thing I felt like doing was picking up that
damn phone to call different people with a health report-
some of the relatives were very insulted that I didn't-
people just have no idea what that is like. 
I hope your Mom gets better each day, Bill!


Anne

[boxman55]

Bill, my prayers are with both you and your Mom. It must be very hard on you. Please know that your Mom does appreciate your efforts...Boxman

[Sluff]

Bill you and I have had some contact during this ordeal for you, although minimal contact it has been please know my thoughts are with you daily. If you need anything give me a call.  That sounds nice when people say this but I mean it. I have been through this for both of my parents and I know exactly what you are dealing with. The difference between you and me though is I was not a kidney/Dialysis patient myself at the time, and I know what a toll that takes on you as well. You have done so many good things for the dialysis community through all your blogs, travels and involvement with so many organizations that I hope you receive some help in return. You definitely deserve it. Give your Mother an extra hug today from all of us at IHD.

[paris]

Bill,   You are such a good person.  When my mother was failing, I flew from NC to Ohio every weekend for two years.  No one asked me to, but it was my Mom. It is hard to juggle all that needs to be done, decisions that need to be made and still maintain your routine.  Don't answer the phone.  Let people leave messages.  Or put a message on the answering maching -- "today is --, Mom is doing---"   I think because of our own health issues, we know what kind of help we want people to offer.  Not even offer; just do it.      I'll keep your Mom in my prayers.  There is nothing as special as our Moms.       You Mom raised a very caring son.   

[monrein]

I'm thinking of you Bill as you go through all this with your Mom at the same time as having to continue your own care.  Tough stuff indeed.  I've always thought that care-giving is the harder job than care-receiving although neither is a walk in the park.  I hope your Mom improves and that you can get some respite yourself without absorbing too much guilt along the way.  I have no doubt that your Mom is really proud of you and grateful for all you have done and continue to do for her.

Big hugs to you as you hang in there.

[Bill Peckham]

Thanks everyone. It's nice to vent somewhere and like you Paris no one asked me to do it and I could have ducked it easy enough (really only I know the dialysis wasn't an issue). My Mom is answering the phone mostly these days ... it was in the first chaotic days when I was trying to get my feet under my that it was incredible. I've tried to get my Mom to use the caringbridge site but she has been sending out hand written notes - working her way down the list she has kept - dozens of notes ... no doubt why she has so many friends.

Even the caringbridge site is a decision I question and I wonder how she really feels about it. For the surgery she is setting up a phone tree - I call two people, they call two people, repeat. It's old school v. new school. I know this isn't new ground for most of you but for me this caregiver role is all new. Se's doing legal preparation, getting her affairs in order ... communicating medical guidelines, sharing where she'd like to be put to rest ... which is good and is the sort of thing we all should probably do but still it just hard to sit by knowing what thoughts she's dwelling on, I've been there. Hell I am there. Starring into the abyss. I still don't know what to say.

[G-Ma]

Bill
My prayers are with you and your mom...I find it very difficult to be a care receiver but I as many of us have been in the role of care giver and that is so very difficult...to know the right things to do, say, achieve...evrything.  Please take one day at a time, give yourself a set amount of time each day to just take care of yourself (besides the d)..even if it is just 5 min to breath.
Ann

[paris]

I've been thinking of you and your Mom.   Because of kidney failure, you know more of what your Mom is feeling and thinking than most.  It is a helpless feeling to see our parents age and struggle with health issues.  If felt stange to be taking care of my Mom who took care of me.  We reversed roles and, mentally that was hard.   I am glad she has so many friends; that show the type of person she is  (must be a lot like her son).   Please let her know that many people she has never met are praying for her.   Take care of yourself during all of this. We all care about you very much   

[Mimi]

Bill, I just found this thread.  I am so sorry about your Mom, but happy to hear she has begun to recover.  I
know what you are going through, I was caregiver to my Mother after she had a stroke in 1990 until her
death in 1991.  It is a hard job, but one that most of us,as children, want to do.  You and your Mom are
in my prayers.

Love, Mimi

[aharris2]

It's a whole lot easier when the need for care develops slowly - you can grow into the role. Bill, you have had it suddenly thrust upon. You have stepped up to the responsibility (which befalls us when a parent needs help). Many simply sidestep it.  You're a good man Bill and you will always feel good about yourself for having been there for your mother.

 

Best wishes for you and your mom, especially on the 23rd.

Alene and Rolando

[glitter]

Bill, I know what your going through and its tough. Not just the logistics of it all but the conversations you have with your Mom . My Mom has COPD end stage- I am cherishing this time with her.  Its extraordinarily hard to face our parents mortality, harder then even our own.  When ever you write of her- you can see how much you love her- she is lucky to have you, and you her. I love the idea of the phone tree, and what a great example of her thoughtfullness. 

[Bajanne]

My caring thoughts are with you at this time.  I was caregiver for my two parents, until my sister took my mother with her (while I was going through breast cancer) and I took care of my father until he passed.
The upside to this is that you feel a great gratification to know that you have got a chance to help the person(s) who brought you into this world and brought you up.  I found that things I would normally be very squeamish about came as nothing to me as I was able to express my love tangibly to my parents.
Bill, you just keep on keeping on...

[annabanana]

Yes, being a caregiver is hard. But you should trust yourself to do what's best for your mother, and for yourself. It's very much okay for you to feel all the things you're feeling, positive and negative. Sending good thoughts your way.


 

[paris]

Bill, just checking in to see how you and your Mom are doing.   Keeping both of you in my thoughts and prayers.   

[Bill Peckham]

She came through the surgery without any surprises. The surgeon said there was a lot of calcium on one of the valves. It was like a gun pointed at her brain. Another piece of calcium could have broken off at any time and caused another stroke only this time in a more sensitive part of the brain. I'm very glad the valve has been replaced.

I saw her last night after the surgery - she was still out - she looked pretty rough. Then this morning she called me at 8AM and sounded great. Her voice was real strong, she was sitting up, having broth. I was shocked, but elated. Then I called back and she sounded 180 degrees different. Weak and tired. The nurse said she had had swings in blood pressure and had thrown up - which must have been hugely painful. I put off going down to the hospital to let her rest. When I got there she looked very worn out.

She has a temporary pacemaker hooked up (first I heard about it was at the ICU). I saw the doctors while they were rounding - good timing. Tomorrow they will decide if they need to put in a permanent pace maker.

Interesting thing happened when talking to the doctor and nurses. I was there with my older brother who is deaf. I was signing/interpreting which while I do that I speak what I am signing out loud. So the doctors had to listen to me while I simplified what they were saying and with ASL you really only give the highlights - no grammar. I found it clarifying because if I wasn't sure how to put something I could ask for clarification and they could follow along and anticipate what information I would need to complete the explanation. It was a pretty helpful dynamic.

The other thing is I have a cold so I had to mask up when visiting, I don't think I should hang around the ICU. I'm pretty worn out and Mom needs to rest rather than worry about talking to me. Also I need dialysis tonight. Over the weekend I had a cartridge leak (which I never get) but I didn't clean the lens well enough so I had a alarm the next night ... bottom line I'm under dialyzed and under rested.

All that said I think Mom is through the worst of it. Thank you all for your good thoughts. If you'd like the address to the Caringbridge blog I am keeping send me a PM.

[willieandwinnie]

  Glad to hear from you Bill. Get some rest yourself and take care of that cold. Let us know how things are going. 

[monrein]

Thinking of you Bill and hoping you get back up to speed, dialysis-wise, soon.  I also hope that your Mom makes a good recovery and starts feeling better.

[paris]

Thanks for giving us an update, Bill.  You need to take care of yourself, too.  I know it is hard to balance everything, but we worry about you too.  Hope tomorrow you and your Mom both feel better.   

[pelagia]

I'm just back from a trip and reading this for the first time.  It's good to hear that your mom made it through the latest surgery.  You have had your hands full.

Be selfish about your time.  Do what you need to do for your mom and then take care of yourself.  My best advice is to ask people to help or to run interference for you.  My brother-in-law was a godsend after Stephen's surgeries.  He called family members for me and told them not to call us until we called them.  I posted on caringbridge when I could and that kept friends near and far updated.  I couldn't even keep up with calling the immediate family.

We're here for you if you need us.

[okarol]

I hope your mom gets stronger reach day. Try to rest while you can. Take care 

[annabanana]

 

[paris]

Checking in to see how "Mom" is doing.  And how are you doing?  You have a lot on your plate right now.  Hoping things are ok.