Triggers for caregivers

HELLO SCOTT, I HAVE ADHESIVE ARACHNOIDITIS. I CAN NOT BEND, SIT, WALK, COOK, IN WINTER CAN NOT DRESS MY SELF. HUUSBAND WORKS, FAMILY LIVES IN OTHER STATES, HAD "FRIENDS!" LIVING IN A BIG HOUSE VERY HARD TO KEEP IT UP. I AM LOOKING FOR SOME HELP FOR THAT. OUR DREAMS ARE GONE BECAUSE OF ME AND HAVE A LOT OF GUILT. I FEEL SO BAD FOR HIM AS I AM GRADUALLY WILL BECOME A TOTAL BURDEN. I CARED FOR MY MOTHER SADLY IN A NURSING HOME HAD TO BE THERE EVERYDAY TO KEEP AN EYE ON EVERYTHING. HOW CAN I HELP HIM. HE IS SO TIRED. I DO THE BEST I CAN BUT.....LIVE IN THE COUNTRY NOT TOO MANY ORGANIZATIONS TO CALL. SOME DAYS WE ARE SO DEPRESSED. I AM SO ANGY AT WHAT THE MEDICAL "PROFESSION DID TO MY SO CALLED LIFE AND TO OTHERS WITH THE SAME DIAGNOSIS!! THEY TAKE NO RESPONSIBILITY! MY GOAL IS TO CHANGE THAT!

Hello @kimspr3 I am sorry to read of your health difficulties. That must be a very difficult diagnosis to bear for sure.

I understand when you talk about your guilt. My wife and I felt tremendous guilt at the resources we had to use up to meet her medical needs when there were so many other things in life we had hoped to be able to do. But when you receive a chronic illness I think almost everything in your world changes. At least it did for us. Our family also lived in other states and our small town had no real resources for us until my wife was prescribed hospice care.

We experienced both great medical professionals as well as really bad ones during my wife's journey. Luckily she did have one doctor who was extraordinary for her and with me as her caregiver. He was a neuro-oncologist and he was amazing -- it made up for many of the less than adequate other medical professionals we had endured prior to his care.

I hope you have found some solid medical support! Have you?

Strength, courage, and peace to you and your husband

HELLO SCOTT, YOU DON'T KNOW HOW KIND WORDS HELPED. MY HUSBAND HAD A MELT DOWN LAST NIGHT SAID SOME PRETTY CRUEL THINGS. IT CAME FROM HIS HEART. I HAD BAD THOUGHTS AFTER. HE APOLOGIZED BUT THE WORDS WERE SAID. HE WORKS TAKES OFF TO TAKE ME TO DRS. HE CAN'T RETIRE BECAUSE OF SOMETHING HE DID. I THREW THAT IN HIS FACE! I TRY TO MAKE THINGS EAISER FOR HIM BECAUSE I KNOW HOW HARD IT IS. SEND HIM TEXTS SHOWING HOW MUCH HE IS APPRECIATED. AS YOU KNOW WHEN THERE IS NO FAMILY, LOSS OF FRIENDS BOY IT'S SO HARD. I'M SORRY FOR YOUR LOSS. I HAVE A FRIEND WHO HAD CANCER SHE LOST MANY "FRIENDS" WHAT IS WRONG WITH SOME PEOPLE? SHE'S FINE! HAVE A GOOD DAY!!!!

Sorry to read you had another tough night. They are tough enough without added difficulties.

When our nerves are frayed, our bodies aching, and our reserves on zero, it is often impossible to keep a clear head. I know there were occassions I lashed out at something, which made my wife sad, and I regret it to this day. All we can do is apologize and try and teach our tongue better manners 🙂 Doen't always work though. Unfortunately I know!

The vast majority of our friends, many of well over 40 years, all took a powder when my wife got her diagnosis. Husbands and wives both. I chalk it up to them perhaps being too uncomfortable to manage a relationship with a 'changed' person. Perhaps it is that they cannot confront the thought, even second hand, of their own mortality. Maybe it is simply fear. I do know my wife's long time friend confided in me she 'couldn't be with someone 'crazy'.

A friend of my daughter's told her 'you will shocked by those who abandon you in your time of need, and you will be equally shocked by who it is that sticks by your side.' It was very true. In our case my wife's best freind from school days reappeared and with me it was an ex-colleague from many states away. One thing I learned...small things make a HUGE difference during illnesses!

I like your idea of the texts alot! Nice touch!

I hope the sun is shining wherever you are today!

HI SCOTT, SINCE I'M NEW AT THIS I CAN'T TELL WHOS REALLY EMAILING ME IT DOESN'T SAY. WHO IT'S TO?? HAVE SOO MANY EMAILING FOR OTHER REASONS LIKE MEDICATION, WITHDRAWALS ETC. I LIKE YOUR DAUGHTERS RESPONSE. YOUR ARE VERY KIND. MY HUSBAND WENT TO SEE HIS SON FOR FATHERS DAY. HE LEFT AT 10 AM NOW 7:50PM NO CALL,TEXT THANK GOD I HAVE MY 4, 4 LEGGED CHILDREN. 2 CATS 2 DOGS. LIVE IN THE COUNTRY BECAUSE OF THE DOGS NOT AFRAID TO BE ALONE WHEN IT GETS DARK. VERY PROTECTIVE OF ME. SPOUSE A DIFFERENT STORY. HOW IS YOUR DAUGHTER? I NEVER WEAR MY HEAT ON MY SLEEVE. I TRY NOT ANY SHOW PAIN OR TALK ABOUT IT, PEOPLE DON'T CARE ANYWAY. BUT MY HUSBAND KNOWS BECAUSE IS HARD TO SIT, SIT STILL, STAND STILL. I ROCK A LITTLE BACK AND FORTH TO KEEP MY MIND OFF OF THE PAIN. YOU ARE A VERY KIND PERSON AND SEEM TO LOOK FOR THE BEST IN PEOPLE I CAN'T ANYMORE. HAVEA GOOD EVENING SCOTT!! THANK YOU

Good morning, @kimspr3 I hope you had a good night.

Thank you for inquiring about our daughter. She is doing better. Just went in for an extra check up since she has a very stressful week coming up and the doctors are a bit worried how she will manage it. She is well prepared and will keep in touch from her 'outpost' for the week.

I think I mentioned right now I, too, have two dogs. My 1 year old pup who enjoys the sunrise more than me and is an early (make that very early) riser! I also have our daughter's rescue. I just began obedience classes for the pup. She is so smart she usually outsmarts me in our training. We've had a bear cub and mother in our woods lately so they get a bit nervous when they are about in the dark, but then calm down pretty fast. When we lived in New Mexico our Labs there also handled every wild beast in our 'hood, but got skittish when bears were close by. It was great fun to hear our elder Lab learn to howl back and forth to the coyotes since we were in a valley between two mountain ranges.

I thank you for the compliment, but I am far from able to find the good in everyone. I work hard to overlook or accept other folks' idiosyncrasies since we all have them! That said, I did draw the line when someone was uncaring or crass around my wife. It was the same with our adult children. They could put up with a great deal, but if someone showed disrespect or made fun of their Mom, they'd lash out. I think I was a pretty poor example for them since I did the same.

On Connect you can manage what messages you get and it should list what the subject is in the email notice. I always try and use the "@" sign with screen name so those emails should say something like "you were mentioned..."

When my grief gets overpowering, I too, sit and rock. I tried reading at those times but the only thing that seems to take my mind off it is music. Music is one of those things I really missed during my caregiving years as any TV, radio, music, etc. was too stimulating and confusing for my wife so for those 14+ years we never turned them on. Now I leave my music on pretty much 24/7!

I hope you have a solid Saturday and your husband enjoys his Father's Day!

Strength, courage, and peace!

Scott,

I’m in my 4th year of ft caregiving but new to this group, I keep a “note” on my ipad’s notes app of supportive/helpful things I read so I can go back and read them when times are especially tough. I have already saved three quotes from your postings (two from this one post!). Thank you for what you do, and share.

Good morning @vickys Welcome to Mayo Connect and our discussions here on Caregiving. Great to have you here.

I was drawn to Connect while trying to find a place to share, vent, and talk about the true realities of caregiving. I appreciate your saying 'when times are especially tough'. It points out that all times of a caregiver are tough, but sometimes they get even the best of us on against the ropes. Caregivers ROCK like no others!

If you don't mind me asking and when you have the time, who are you caring for?

I hope the sun is shining today wherever you are!

Strength, courage, and peace!

I’m caring for my husband (we just celebrated our 34th anniversary!). He has MSA-c and metastatic prostate cancer. It’s been just over 5 years since first symptoms. Full time care now, although we did just start having a home health aide come in once a week, and soon graduating to twice a week. I have kept a journal of issues on my ipad (I lock the note on the Notes app for privacy) through these 5 years, and that has helped me identify triggers that affect him, so I know better how to treat, respond, and cope. I am also reading (in those wee hours at night when I can’t sleep) “The Unexpected Journey of Caring,” by Thomson and White, recommended by another online support group I follow. The subtitle is “The Transformation from Loved One to Caregiver,” and it’s as if the authers are in my head. I don’t want to put it down. PS I think you’re in northern MN? I used to spend part of every summer in Nisswa, MN.

That sounds like a difficult path for your husband for sure, @vickys I am sorry to read it.

Thanks for the mention of that book. I will have to take a look at it for sure. I am always interested in what folks have written on caregiving.

I understand your 'in those wee hours'! It was those hours that drove me to find Connect. I was feeling increasingly isolated by caregiving and was searching for something for caregivers that I could access 24/7. I think my first couple years I posted to Connect most often between 2 and 3 am 🙂

My dog and my daughter's rescue both came from just outside the Nisswa area! SMALL world! I spend about half the year up here in the Grand Rapids area and the other half 'down south' in Chicago.

Cheers to you and all caregivers today!