IndianaScott

Scott, Volunteer Mentor @IndianaScott

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Activity by Scott, Volunteer Mentor @IndianaScott

IndianaScott

Good morning @jccr I am aware my MIL had ringing in her ears, but a portion of her life was spent selling blasting products in the iron mines, so they sought that was the likely source, but was a guess nothing more. She did suffer from migraine headaches, but those went back to the days of her early years and followed her along, actually decreasing later in her life. However, again, the cause of the decrease was never determined. Sorry I cannot be of more help on this one!

Peace and strength!

IndianaScott

Seeking input, communication, and sharing experiences is never whining! I know what you mean, though. When I sought to share with family members they often accused me of 'whining' and 'seeking attention'. It's what brought me to Connect!

IndianaScott

1 day ago by @IndianaScott in Caregivers · View  

Love and Caregiving...

Another Insight into Caregiving: Connecting on a Unique Level

During my 14+ years as my wife’s primary caregiver I gained many insights into caregiving, but there was one, over all the rest, I had never expected.

I found my wife and myself connecting on a very different, and in hindsight I now say, unique level. Rather than being strained by caregiving, our love flourished and deepened.

We had been married for 27 years before her diagnosis and were having a fairly unremarkable life together. Two jobs, two kids, two dogs, two extended families (which gave us both love and fits at times), etc. Then we discovered we were to actually be given two lives together. We’d lived the ‘for better’ and ‘in health’ portions of our vows. Now we were to embark on a new life where we would work on the ‘for worse’ and ‘in sickness’ segments.

As every caregiver here knows, the day your patient and you hear the words of your diagnosis lives change. In our case that change would be a forever change.

During my caregiving I learned many new skills, tactics, and strategies, but what I didn’t expect to encounter was the deepening of the connection my patient and I had. After all, after 27 years of being together, we both felt we pretty much had our love and feelings for each other figured out. But we didn’t.

This deepening of our connection certainly didn’t make caregiving a bed of roses, nor easy, but it was nonetheless amazing to me. It was also the underpinning that gave me the strength to rise to the often overwhelming demands of caregiving each day, day after day.

For the last five years of my wife’s life she was totally dependent on me. Even when our children were at their youngest, I had never had anyone so totally and completely dependent on me for every aspect of their life. When our children had been tiny there had always been a partner to help, parents, grandparents, friends, etc. who offered to lend a hand in the tough times. But I was to find this not to be with caregiving. My wife needed food, clothing, medicines, routine, bathing, exercise, communications, medical care, patient advocacy, and much more. That was all on me.

The new level of connection didn’t dawn on me right away. Rather it was one day when I was banging around the laundry room. Not particularly happy having to wash another, and unexpected, set of bed linens, nightgowns, etc. while I also had a meal to prepare, a house that was a mess, a boss who was angry I had caregiving duties encroaching in my life, and more. I knew I banged the wash machine lid down harder than I should have when in the silence after I could hear my wife quietly weeping in her bed. Between her sobs I heard her say “Damn me! Damn me! I should be doing this for Scott.”

I stood around the corner frozen by those words. There she was bedridden, fighting brain cancer, and she was mad at herself because I had her laundry to do. I mumbled to myself “no, honey. You should be mad at me for acting like a spoiled brat!” I steeled myself, walked into our room, sat on the edge of the bed, and held her hand. I have no idea how long we held each other and cried. After some length of time we realized we were each saying the same thing through our tears “I am sorry!”

That day my view of caregiving changed. We both agreed neither of us had chosen our roles, certainly didn’t like them better than our previous lives, nor did we have any option but to accept them.

I sat alone later that night in silent darkness of our living room and it was then I came to embrace my role as caregiver. Every aspect of her life now depended on me. I had no alternative but to repay that need and her love by accepting my new role with as much grace as I could manage each hour of each day – one day at a time.

Over the years many people have asked me how I could have done what I did as a caregiver. My answer has always been the same “Love makes you do crazy things!”

Peace and strength to every caregiver!

hopeful33250

Teresa, Volunteer Mentor responded 9 hours ago · View

@IndianaScott Hi Scott: While all of your posts are thoughtful and meaningful, this one just took my breath away. Thanks again for sharing with us. Teresa

thankful

thankful responded 5 hours ago · View

Scott, what a beautiful story of Love! My sense is that your story some would say is so "old school", but I would say that you were experiencing that part of love that seems to escape many of us today. Everywhere we look whether it be TV, radio, magazines, movies, etc. its all about sex, performance, looks that seems to try and send us the message "this is what love is all about"! Your story, [...]

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IndianaScott

Hello @angiede2001 Nice to e-meet you, even if it is under such stressful times for you. I am Scott and while I have no experience with dialysis, I was the primary caregiver for my wife for 14+ years and helped her through some of the very difficult treatment decisions she made. I also helped her with communicating those to family, and often acting as her armor and buffer with those who disagreed with her decisions and felt the need to interfere with her decisions. My wife made many decisions where she chose what she viewed as 'quality time over quantity of time' in her treatment decisions. She and I discovered often these are some of the toughest decisions a patient makes and frequently difficult for some others to understand and accept. I applaud your positon of supporting your husband's difficult decision. Caregiving is touch day in and day out, but when we must add these gut-wrenching decisions it can become overwhelming. At least it frquently did for me.

I am also the Volunteer Mentor over on the Caregiver discussion group. I just wanted to say it is a welcoming and nonjudgmental group. We all love to share some of the caregiving hints and hacks we have each developed during our times as caregivers. Feel free to just check it out, read, and not even post if you don't feel up to it. I know you said you didn't feel ready, but just remember we will be there 🙂

Peace and strength.

IndianaScott

Hello @medic7054. I am no matter of medical professional, but I know the issues surrounding medical marijuana and other pain medications are a very amorphous topic right now. There are state laws and then the federal laws as well. With the new US Attorney General saying publicly he wishes to attack states who allow medical and recreational marijuana use I am sure some medical professionals are very nervous right now.

While I cannot speak for anyone who has posted that their doctors are ignoring state law, etc. I am guessing here there might be far more to it. Here in my home state there are several medical centers run by religious groups and they write their own rules in some areas of care. I imagine this might be true for the use and prescribing of medical marijuana.

While not related to marijuana, I would also not be surprised if the opioid crisis also plays into some of these decisions. Again in my state and in my own county it is a true public health crisis. Top it off with the narcan opponents and you have a stew that some medical professionals may just decide to say out of.

Just my thoughts....

IndianaScott

I will only add one small item here. From my wife's experiences with cancer I believe it is important for all of us to recognize cancer, how it consumes our thoughts, energy, and bodies is unique to each person. There simply isn't a one size fits all answer to how we formulate our battle plans in our individual wars.

IndianaScott

Good morning @anncgrl I would think it wouldn't hurt to at least ask your husband's GP what he thinks of Aracept.

Also my wife found Seroquel to be a significant help to her as she progressed through her journey with brain cancer, which brought with it many symptoms similar to dementia.

Peace today!

IndianaScott

Hi @pattymac. Nice to e-meet you here. I am very sorry to read about your health travails. I was my wife's primary caregiver during her 14+ year war against brain cancer so my thoughts come from that orientation. From her experiences I can agree the 'waiting and watching' times in our medical journeys can often be extremely difficult on one's nerves! We are so often programmed to expect immediate medical solutions to our problems that waiting can be excruciating. In my wife's case she worked very hard to try and focus her energies anywhere other than on her (at the time) current health issue during those times of waiting and uncertainty. She would often use these times to treat herself to some indulgence or other. During her illness her mantra was 'in all things moderation' so she would use her exceedingly challenging times to treat herself. A book, dessert, have me cook a favored meal or food, make a phone call to an old friend, order a trinket for herself from a catalog, etc. Might not work for anyone else, but it did for her.

I live in the same area as you and likewise have been frequently 'outsourced' by my GP to Chesterton, Valpo, LaPorte, and beyond for specific tests or specialists. Maybe the new hospital will provide more extensive services once it is done.

I wish you the best as you wait. Please know there is a big online Connect community here to listen and visit with you.

Peace and strength!

IndianaScott

Hello @jccr Nice to e-meet you here! I am Scott and first and foremost I send you my best wishes on your journey! While I do not have FTD, my mother-in-law did. I was one of her secondary caregivers and would be more than pleased to share what insights I have. Additionally I worked for the national Alzheimer's and Related Diseases Association in their research group so if I can bring anything from that experience I am happy to do so for you as well.

My MIL did not participate in any trials, but she was one of the early users of Aracept when it was new on the market. It did help her maintain her plateaus.

I send you peace and strength!

IndianaScott

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

IndianaScott

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!

IndianaScott

Thu, Mar 23 at 9:16am CDT by @IndianaScott in Caregivers · View  

Insights into Caregiving

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!

pkindron

pkindron responded 6 days ago · View

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. [...]

IndianaScott

Scott, Volunteer Mentor responded 6 days ago · View

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 [...]

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IndianaScott

Wed, Mar 22 at 7:55am CDT by @IndianaScott re: Life after Brain surgery in Brain Tumor · View  

Hello @lisa88bloom Nice to e-meet you here. Welcome to Connect! Sorry to hear of your health issues. I send you strength!

I am Scott and I was the primary caregiver for my wife who had brain cancer, a resection of most of her tumor, and then fought on for 14 years.

She spent a month in the hospital, six months inpatient rehab, then a year in outpatient rehab. She regained most of her abilities with her most notable deficits being left-side peripheral vision loss and math abilities.

I am happy to answer any questions you might have based on her experiences, but I certainly understand that each and every case of brain cancer is highly individualized in impacts, effects, treatments, recovery, etc.

Peace!

IndianaScott

"Why do you need to ask your provider if it is ok to wean off of hydrocodone?" First, self-medicating or self un-medicating is never a good idea! The provider must be in the loop as to what the patient is taking, how much, etc. Additionally it is high addictive and some patients may want to heed medical advice on this.

IndianaScott

Tue, Mar 7 at 8:04am CDT by @IndianaScott re: Caregiving and Reality in Caregivers · View  

A different aspect of the realities of caregiving....when it's over. Just my thoughts because I needed somewhere to say it.

"Eight months today. I miss you so.

It’s not in the little things. Neither is it in the big things. It’s in everything.

Time has not touched the rawness of my wound.

You are still the first thing on my mind in the morning. Your love is the last thing I think about as I fight through the nights’ lonelinesses.

I miss you when I’m sad, because no one was as good at soothing my troubled soul as you. I miss you when I am happy, because you made our good times sparkle. I miss you in your Nightlight Song, passion for our family, Linners, Jumbles, Winstons, and in those things I truly never, ever thought I would.

Goddamnit…how I miss you!

I call you ‘my best half’, but you were always more than half of me. In our youth it was you who forged our way. When I was reticent, you led us to discover the bold paths to our future. In later years it was you who taught me steely courage, indomitable strength, intenseness of beauty, and the rock-solid depths in which our love was rooted. You taught me about pain no one should ever have had to endure, least of all you.

I have come to accept I will miss you all the days of my life.

That alone may well be the most valuable gift you ever shared with me.

True, undying, forever love."

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IndianaScott

Wed, Mar 1 at 12:15pm CDT by @IndianaScott re: GBM Resection in Brain Tumor · View  

Hello @cbrice Nice to e-meet you here. Sorry to hear of your friend's health challenges. They are always tough.

My wife was 49 when she was diagnosed with brain cancer. She fought her war for 14 years while I was her primary caregiver. So my viewpoint only comes from that which I witnessed and spoke to her and her medical team about.

I would offer this one bit of advice, which we found helpful. Cancer, and especially brain cancer, is a unique disease which attacks each patient in a novel and sometimes very individualized manner. My wife made her care decisions based on things she decided before her first medical intervention, which happened to be an emergency craniotomy, so right away you can see her case is different. She however said she wanted quality over quantity and made her subsequent decisions following that with what she called her Main Directive. She made many other choices along the way, but they were all guided in light of her overarching initial decision.

I won't publicly say what her care decisions were since I am sure they were unique to her situation, area of the brain affected by the tumor, and our family situation. None of which might be applicable to any other patient, so describing them could serve to raise or crush another's expectations.

I will also say there is no such thing as having too many early discussions with your medical team! My wife had fabulous support from her neuro-oncologist at Mayo Rochester and her neurosurgeon there as well. They, more than anyone else, helped her become at ease with her decisions.

Peace, courage, and strength

IndianaScott

Mon, Feb 27 at 5:00am CDT by @IndianaScott re: Meet fellow Caregivers - Introduce yourself in Caregivers · View  

Hello @charliesmom I am Scott and it is nice to e-meet you here and I am sorry to hear of your caregiving challenges and your own health concerns on top of them. It is not an easy row to hoe. I was the sole caregiver for my wife during her 14 year battle with brain cancer.

Feelings of being overwhelmed, depressed, and stressed go hand-in-hand with caregiving and I wish there was some magic potion or words that would help. The isolation of caregiving I found to be one of the biggest challenges for me. I also understand you saying you don't want to go to the doctor for yourself. I didn't go for various ailments of my own for those 14 years and now am paying a price for all the 'delayed maintenance' I have to address now. No easy answers to any of this.

You will find the Connect Caregiving group to be a new source of friends who are nonjudgmental, have big shoulders, and love to share their ideas and support for fellow caregivers. We don't always have any answers, but sometimes it is good to know you are not alone in this journey and we each, in different ways, have learned some pretty nifty and helpful 'caregiving hacks' to make some portion of our work easier or at least no harder than it is.

I send peace, strength, and courage your way and may spring come early to Alberta!

IndianaScott

Mon, Feb 27 at 4:52am CDT by @IndianaScott re: Meet fellow Caregivers - Introduce yourself in Caregivers · View  

Hello @hmr52 I am Scott and I was the primary caregiver for my wife for 14 years. I am sorry to hear of your challenges with caregiving! You are correct to feel overwhelmed and exhausted! Plus the tension that is caused by the friction between caregiving demands and job demands can be crushing and impossible to meet everyone's expectations at those times.

We who gather here on the Connect Caregiving discussion group are good listeners, have broad shoulders, are nonjudgmental, and love to share what we know from our caregiving experiences. I smiled when you related your situation with a housecleaner. I experienced a similar disastrous outcome when I was just trying to get ahead of the mess! I always say caregiving is the hardest job I have ever had where I got no training and no job manual when I was 'hired'!

Be strong and all any of us can do is our best at each time. I hope you can find someone to spell you a bit.

I send peace, strength, and courage! Know you have understanding new friends here!

IndianaScott

Hi @michiganstressedlady Sorry to hear it is a bad day. Those are really a challenge for sure! One of the most difficult things for me to come to peace with was the fact dementia causes our patients to not think logically, when we, as their caregivers, are trying to logically figure things out!

As I often said to family members "I have to be very careful in picking my battles." I went through days and days of "yes, dear" --
"no, dear" and not much else in the way of responding. I also began to ask my patient immediately 'what do you think?' or 'which would you like'. This gave me a mechanism to respond to their suggestions and a response of 'I agree with you' as often as I could.

Just my experience though, so your case could be very different I understand.

Peace and strength

IndianaScott

Hello @michiganstressedlady I am Scott and it is nice to e-meet you here. I am not a medical professional of any kind, but I was the primary caregiver for my wife for 14 years as she battled brain cancer. I am sorry to hear of all the trials and tribulations you are having due to your partner's health.

My MIL also had frontal lobe damage and one of the first things that changed in her was that she also was sexually inappropriate and she took to swearing, which she had never done before. We all made the decision to limit her time and interactions with the youngsters in our families for their own good. In my wife's case her neuro doctor told us when there is brain damage very often prior personality traits are hugely magnified in the patient and this was certainly the case with my wife.

I must say I do not know how you manage a patient with such a higher body size than yours. My wife was smaller than me, but we turned to using a mechanical patient lift, such as a hoyer lift. If you aren't familiar with it, this link talks about their use. http://www.wikihow.com/Use-a-Hoyer-Lift.

Also in my wife's case often times it made no difference what I suggested in her care, but if the doctor told her she needed it she listened and his/her words were LAW. So we most often used the doctor to communicate anything that needed to change.

I would suggest the doctor immediately take steps to tell your partner he cannot self-administer his drugs! Taking a whole bottle of Vicodin and a whole bottle of klonopin seems to me to be beyond dangerous!

Hopefully the doctor can also strongly suggest to him to get his affairs in order. It made a huge difference that my wife was agreeable to do this prior to her passing. Remember if you don't have a will, etc. you actually DO have a will --- the government does it their way no matter what you want or wanted.

Peace, strength, and courage!

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