Saying HI to all our caregivers!

Posted by Scott, Volunteer Mentor @IndianaScott, Apr 25, 2018

Good morning (afternoon, evening, or night) to all our wonderful caregivers here on Mayo Connect! I want to open this post with a hearty three cheers to you all! You are never far from my mind and I apologize for not having been more communicative than I have recently. In December I suffered a stroke, which has stolen some of my right side utilities, but I am adjusting, back in the saddle, and will continue to focus on staying in better touch with all you great caregiving folks who are doing yeomen's duty with your patients!

I recently finished an interview on the value and values of Connect and that has me thinking back to why I first came to Connect and what it was I hoped to find here. I came to Mayo Connect to fight my feelings of isolation and the terrors of caregiving. I remember thinking at that time I must be the only person experiencing all I was trying to manage. So I reached out and looked for something online for caregivers since the only time I had to myself was usually around 2 in the morning. Connect to the rescue!

As you all know, caregiving changes each of us in a variety of ways. In my opinion no one can be a caregiver and not be changed by the vastness of what
we experience, learn, stumble upon, and most of all accomplish as we refocus our lives towards our treasured patients. While I will most likely never get to the point that some folks say in articles I read that 'caregiving was the best time of my life', I can say caregiving for me was more like that famous (at least famous to a grizzled old guy like me) Clint Eastwood movie. I lived "The Good, the Bad, and the Ugly".

Many of us caregivers are thrown into our role with little to no warning, with no employee manual, no job description or pay, and precarious support structures. As we wade deeper into caregiving we are often confronted with feelings of helplessness, loneliness, inadequacy, short fused, and with many mixed emotions as the realities of our new job become more and more evident. In my case one of the other feelings I had to carry, try to work though, and eventually simply accept was the fact those I anticipated or hoped would be at the ready to support my wife and I in her time of illness were not to be found in my new world -- and I do believe caregiving is a world all its own! I have been helped in this part of my journey by the fact my father was an alcoholic and I went though portions of his treatment program multiple times, attended AA meetings, and still to this day, decades later, attend Al-Anon. While I know the 12 Steps are not for everyone, I found myself using them to help me manage my life as a caregiver. I am still working through Step Nine.

I still find myself wishing there were more places, as Mayo Connect is, willing to allow the real voices to be heard of those who are in the great majority of caregivers and not just giving voice to the stories of the .01% who have employers who pay them full pay while a caregiver, offer full benefits on leave, or have unlimited wallets allowing them to provide support to their loved ones, which most of us mere mortals can never ever hope to no matter how much we wish we could.

I also believe, as a caregiver, how I am processing the grief I am living over the loss of my wife differently than many non-caregiving folks process grief. (Terrible sentence, but I hope you get the idea.) Plus certain aspects of it continue to come into my life, such as our adult daughter just now finding her voice to discuss with me some of her deeper anxieties, doubts, and pains over the loss of her mom. One thing she did tell me was she was forever grateful I spoke with her about signing HIPPA forms with her mom so she was able to speak directly with her mom's medical professionals during her long war with brain cancer. It was an uncomfortable, dicey conversation, but she just made it all worth the discomfort of the time.

I've gone on far too long, but those of you here who know me also know I love to write and share about caregiving.

Again I hope this finds you all managing as well as can be hoped for and I will close with one of my favorite quotes, which is still taped above my desk.

From Mary Anne Radmacher it says: "Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow".

I'd love to hear how each of you are getting along at this time!

Strength, Courage, and Peace to all!

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

Harriet Hodgson | @harriethodgson1 | Apr 26, 2018

Thanks for your greetings and sharing your story. Together, we are stronger and better able to be caregivers.

sallysue | @sallysue | Apr 26, 2018

I’m not doing so well with my sister in “moderate stage dementia. She had a hip replacement 1/08/18 and it was the wrong thing to do. She can’t remember that she is not supposed to bend over (or draw her knee up), twist her foot inward nor let that leg pass the midline. It is impossible and the fact that she has not yet dislocated it is an act of God and has nothing to do with my caregiving. I turn my back and she is bending over! She is doing so well medically. She walks without even a cane and without a limp. She has had no pain since the end of the second post op week. But I live in terror that she will pop it out of place because she sits wrong, bends wrong and sleeps wrong according to the doctor’s orders. What can I say. I can’t stay up next to her all day and all night. My husband is super supportive and takes me on dates frequently. I do all that I can and trust God to look after that hip. Thanks for being back with us, Scott. Hope you can regain more of that right side. Keep up those exercises.

Scott, Volunteer Mentor | @IndianaScott | Apr 26, 2018

In reply to @sallysue "I’m not doing so well with my sister in “moderate stage dementia. She had a hip..." + (show)

I am sorry to hear you are going through a tough spell with your sister, @sallysue Caregiving is never easy nor smooth, but when you add something like a major medical procedure to it, I can hardly imagine the burden! I am glad you husband is there to offer support and time with you! It is also great that your sister is making such great progress! I do recall from my mother-in-law's years with dementia that times of medical intervention were always extra challenging.

I don't know what the doctor prescribed for your sister as far as her movement while sleeping, etc., but with my wife, when she had some difficulties with her legs her doctor suggested two of those long body-length pillows. We then tucked them in next to her at bedtime. These kept her from rolling over and in a more stable position at night. But that was my wife and we all know each patient is unique.

Thanks, too for the support! My physical abilities are coming along as well as hoped. The biggest challenge is having lost my sight and hearing on my right (dominant side), but I am doing all I can to compensate for that loss, but it is a bit of a tough slog there right now for me.

I wish you all the best to you, your sister, and your husband!
Continued strength, courage, and peace!

Scott, Volunteer Mentor | @IndianaScott | Apr 26, 2018

In reply to @harriethodgson1 "Thanks for your greetings and sharing your story. Together, we are stronger and better able to..." + (show)

Thanks @harriethodgson1 Yes! You are so very right! Together we are all stronger and able!

I hope you are doing well!

Strength, courage, and peace!

verilee1776 | @verilee1776 | Apr 28, 2018

Thank you for your words of encouragement.

Scott, Volunteer Mentor | @IndianaScott | Apr 28, 2018

In reply to @verilee1776 "Thank you for your words of encouragement." + (show)

Hello @verilee1776 Very nice to e-meet you here at Connect! We are thrilled to have you with us as part of a wonderfully open, nonjudgmental, and caring group! I believe you will find this group has lots of great ideas, loves to share, and is even a safe and comfortable place to vent, which all caregivers need to have from time to time!

I am sorry to hear of the healthcare journey of your mother and husband. It is quite an accomplishment that you are such a committed caregiver! As you said, it is not an easy journey by any means, but you are to be lauded for your commitment to your loved ones!

We welcome you with open arms and are more than pleased to have you with us!

Please feel free to ask any questions and know we, as a community, are here to offer our support and caring, even if from afar and via the wonderful electrons of the internet!

I send you continued strength, courage, and peace!

mnina | @mnina | May 3, 2018

Dear Indianascott, I’m so sorry to hear of your stroke last December but so grateful you are still with the Connect community. I haven’t participated in quite a while as my move from country to city with my terminally ill husband resulted in him becoming very ill both physically and mentally. He now stays with his brother and visits me. His disease appears to be spreading to his brain now and lumps are appearing elsewhere. The doctors gave him a timeline of 6 months in 2015 and he almost died twice this past December. He came to visit last night, unfortunately he had an anger eruption and left, which is good in a way because he scares me when he gets verbally aggressive and abusive. Friends who know I’m looking for work say I should get into caring but I remember you say, “ in a New York minute, NO”, that’s how I feel. Right now I feel gutted and beaten. I’m tired of living on the edge of death with my husband who lashes out. I just feel wiped out inside, I don’t think I have the motivation or energy to run out of a burning building. I want to be part of life. I feel caring has taken so much outta me. The thought of dealing with sick people makes me want to run away. I too, became a carer out of love and devotion. Thank you for sharing your past words are helping me to connect today. I feel so lost and too tears to go out in public. Wishing all Carers strength and comfort.

Scott, Volunteer Mentor | @IndianaScott | May 3, 2018

In reply to @mnina "Dear Indianascott, I’m so sorry to hear of your stroke last December but so grateful you..." + (show)

Hello and good morning @mnina Thank you for the kind words. The stoke caught me unaware and shoved me back to a place I really didn't want to be! That last thing I was prepared for (as a caregiver) was to be a dadgum patient! Once again I have found Connect to be an important help to me.

I am so sorry to hear of your challenges these days. Caregiving is a rough road and I get angry at how many of us have to travel it alone! Grrr!

I was sorry to read of your husband's continued challenges -- and how they are effecting you. That is a bummer for sure. So good to hear he has a brother to help him out, but I am sure that does little to alleviate the pain you feel.

"gutted and beaten" YEP! Perfectly said! That is an apt description that I remember all too well! Used up, in pain, and running on empty is all too often the memory I have of my caregiving years. I am glad you can acknowledge your feelings! Personally I think that is very important and helps us not feel quite as alone out there. Often times as a caregiver I had to bottle up far too many feelings -- the sadness, the anger, the frustration, and much more. But never let yourself fall into feelings of guilt! Guilt has NO place in caregiving!

We all carry and have our scars with us. We all cry. As caregivers we should wear these like a badge of honor rather than a Scarlet Letter. None of us receive a suit of armor when we 'sign up' for caregiving, but maybe they should be standard issue! I'd have taken mine in all black with a big, purple plume on my helmet! 🙂 When I get frustrated over my fingers and hands hurting from the carpal tunnel I developed from lifting my wife all those years, rather than get sad and angry about it I say to myself 'by golly I loved that woman more than I realized'. Doesn't take the pain away but puts me in a better place about that 'scar'.

Far be it from me to tell, or suggest, what you should do, but I'd say "damn the torpedo's, full speed ahead" and give it a try going out. Maybe just a block. Maybe just down to the corner and back. My first 'walk' when I went out was two houses, then I saw folks out and hightailed it back home! Now I am walking farther and who I see along the way no longer bothers me, but that took time for me to get to that point.

Hang tough!

Continued courage, strength, and peace