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Insights into Caregiving

Posted by @IndianaScott, Mar 23, 2017

Hello to caregivers everywhere! I hope this finds you having as good a day as possible and your burdens not too heavy today.

My name is Scott and as some of you already know I was the primary caregiver for my wife during her 14+ year battle with brain cancer. We were married for 41 years and she was 49 when first diagnosed. During the first 8 years of her battle I was employed as well as being her primary caregiver. Due to a new boss who sought only “employees who will give 100% to their job with no distractions” for the next 5 years I was unemployed and 24/7 fulltime caregiver. For her last 14 months, my wife chose in-home hospice care, during which time I continued to be her 24/7 primary caregiver with some critical support from a terrific hospice team.

As you can see, as a caregiver I am what I like to refer to as ‘well-seasoned’. It sounds a lot better than tired, battle weary, beat-up, etc. So I go with well-seasoned.

I still miss my wife terribly. The adjustment has been challenging for me to manage at times and so far it isn’t getting any better. I believe there is not any ‘new normal’ as so many tell me to go and find, but simply that my life is now just plain different and always will be.

This said, I have been spending some time thinking back on the demands and realities of my years as a caregiver. As I say to our children, I call this “the good, the bad, and the blurry”. The good because it taught me several valuable lessons; the bad as there were far too many truly terrible experiences; and the blurry since much of those years were spent sleep deprived, exhausted, and at sixes and sevens. As I also say to our children “caregiving is the only job I ever accepted where there was no employee manual nor training program offered.” Just jump in the middle of the ocean and try not to drown!

As I look back I’ve decided I’d like share a few of what I have come to see, in hindsight, as critical aspects of caregiving, how I managed them, and what, if any tricks I learned in the process. I share them here for any other caregiver who wants them. It is often said “advice is worth what you pay for it” so since this is free you can take it or leave it. No hard feelings as I write this hopefully to not only help others, but as a personal catharsis as well.

I offer my insights over the coming days in no particular order.

Insight #1: Ghosting

The Urban Dictionary defines ghosting as follows: “The act of suddenly ceasing all communication with someone.” While usually confined to the dating scene, this can occur with equal frequency in caregiving. It meshes nicely with Dr. Martin Luther King’s famous quote “In the end, we will remember not the words of our enemies, but the silence of our friends.”

I am a people person. Extroverted, open, and social so this aspect of caregiving was not only difficult for me to manage, but also difficult for me to understand. Plus those who ghosted on us ran the gamut from family to friends and from neighbors to colleagues.

I don’t pretend to understand why people ghost, but I wish I had been prepared for this aspect of the life of a caregiver and her/his patient. It would have saved my wife and me a lot of heartache and sadness. It still makes me scratch my head in wonder how ‘friends’ of more than 40 years have yet to even acknowledge my wife’s death. Equally how family can decide to visit our home only once in 14 years. How so many forget that the phone, texting, US mail, email, etc. operate in two directions!

As I have thought about it I believe a portion of those who ghosted on us did so due to the fact my wife’s brain cancer affected her personality. I find it common for people who exhibit less than normal mental capacities to be ignored, shunned, or isolated. Safer and easier to simply wall them off from your life I guess.

I also believe a portion of those ghosting do so because it is easier to have a painful thing in our world be ‘out of sight and out of mind’. Things, and especially people, are easier to deal with in our minds if we simply choose to ignore them. Rather than reaching out it is more comfortable to accept an internally made-up reason for one’s inaction.

These days I realize, more than ever, those few people in our lives who made the conscious decision to not ghost on us did so by making a serious effort on their part to stay in our lives at a very difficult time. I am truly thankful to each and every one of them! Their continued connection with us often made the difference between another hellish day and one which contained for us a ray of light and a sliver of hope. A note that makes a caregiver or their patient smile is worth its weight in something far more precious than just gold! I am enjoying taking time now to be certain I continue to let each of these folks know of the importance they had in our lives and continue to have in mine.

My father-in-law frequently opined “if you can count your friends on one hand you are lucky”. He was so very, very right.

Peace and strength to every caregiver!

REPLY

Thank you Scott for your wisdom, insight and the ability to share your thoughts so eloquently.

After I read your post and wiped the tears from my face, I am now able to write this. Despite the horrible pain and suffering of both you and your wife, I hope you have found some solice in knowing that you, being her closest companion and dearest person, were the best person in all the world to be her caregiver. Obviously God has given you some special gifts to enable you to provide the aid and comfort to your beloved wife. “May God bless you and find you peace”. I hope in sharing your experience and thoughts with us you have found some level of release from your obvious grief.

PS: I didn’t know the phrase “ghosting”. I, along with a close friend, had a similar experience. I had to shake my head and be thankful for the “non-ghosters” (is there such a term?) These are the true friends and the ones that really count.

Hello @wandering Thank you for the kind word.

First, if there is no word such as ‘non-ghosters’ there is now! Well done! I agree they are the true friends!

Second, yes the grief continues and as I said these posts will be cathartic for me. That said, I write more to share with others what I found the realities of caregiving to be. My reality as a caregiver was far removed from the majority of the stories about caregiving I encounter in the media. Usually they were feel good stories about someone who was blessed with an amazingly understanding employer, incredible wealth, etc., which made their caregiving stories warm and fuzzy, but (at least in my opinion) setting the majority of us up for disappointment when we encounter the more average realities of life. This came back to the surface with me as my television is currently flooded with advertisements for home healthcare companies. I suppose what they are selling may be possible in some parts of the world, but certainly not in mine. A topic for another post another day 🙂

Peace!

Scott, thank you for saying what I have been feeling. I am the caregiver for my husband who is waiting for a kidney transplant. I never imagined how lonely this time of our life would be. Thank you so much…I needed this today. Janet.

@IndianaScott Hi Scott: Your words always reflect insight that comes from thoughtfulness. It makes me want to look critically at my life and my friendships to make sure that I’m not “ghosting” anyone. You have done well and I applaud you for the insight that you share with us. Teresa

@jantan0323

Scott, thank you for saying what I have been feeling. I am the caregiver for my husband who is waiting for a kidney transplant. I never imagined how lonely this time of our life would be. Thank you so much…I needed this today. Janet.

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@jantan0323 I’m glad that you are with you us on Connect. It really does help the loneliness, doesn’t it? Best wishes to you today. Teresa

Just wanted to thank you for sharing this! GOD BLESS YOU! Sorry to hear about your loss!
We have a disabled daughter with Muscular Dystrophy and she also has Polycystic Kidney disease which she had a kidney transplant about 11 years ago.- she is 34 years old. She is in a electric wheelchair. She can’t physically move on her own but when she is in her chair she goes all town in the summer months.
She lives with us and thank GOD my husband- her father, brothers help her. Most of our other family members hardly come over to see her or do anything for her. They make excuses they can’t take her places and don’t do much for her. I’m sure they love her but she sometimes feels they don’t care. Between her dad & I we take her to all her doctor appointments and in the evening we take care of her because during the day we both work all day.
She does received services from the VNA – Visiting Nursing Association – She receives OT, PT and the nurses that come to the house. They all have been wonderful! Many times she has problems with coordination of the aids service but we make do. My daughter is pretty strong with calling the services to make sure she receives. At times, though they don’t show up.
She was very fortunate to have wonderful friends who did help her a lot during her younger years too! Now they have their own families, and she doesn’t feel very well. She doesn’t like to go out that much especially in the winter. She doesn’t have a lot of circulation on her legs so she is cold most of the time except of course – LOVES the summer heat! She loves her nieces and nephew and spoils them.
Anyhow – We take care of her and understand – even though we take care of our daughter – we need to look at are life to make sure we are not “ghosting” anyone. Thank you for sharing!
Patti

Hello @pkindron Nice to e-meet you here! I congratulate you on the obvious wonderful care you are providing! What a gift for your daughter!

I hope the summer brings ample sunshine and warmth to your area — and soon! We here are riding the usual March rollercoaster — and I am ready for it to climb a peak and stay there!

I recall my wife cherishing the warmth of a nice sunny day! Winters were far more of a challenge and it does my heart good to hear of similar stories. Offers some solace for sure! Always good to know what we, or our patients, go through is not unique.

Thanks for sharing!

Bring on summer!
Peace

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