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ozys
@ozys

Posts: 40
Joined: Sep 09, 2016

@IndianaScott Thanks for reply to my cancer story of husband and the [...]

Posted by @ozys, Sep 11, 2016

@IndianaScott Thanks for reply to my cancer story of husband and the good outcome having gone to Rochester for treatment. We are doing as well as we can, but as you know the days are long and sometimes very trying. We have another house in Indiana, where do you live? We live in Northern Michigan and I work as an elected official for a township which really helps with keeping up with the outside world. Bless you for
taking care of your wife for fourteen years. We have been prescribed a pill for the anxiety so don’t have to
deal with that yet. Take care and all the best. ozys

REPLY

Hi @ozys! We live in NW Indiana just a few hundred yards from the Michigan line. I just drove through Northern Michigan yesterday coming home ‘the long way’ from northern Minnesota. I have some very favorite spots up North! From my youth, Lewiston. From my adulthood and work I spent quite a bit of time in Petosky and Harbor Springs. Traveled all over the state for 8 years of work in an earlier life.

Be strong and yes, we all have those trying days for sure!

Hi Scott:
Your kind words mean so much to us caregivers out here that face the day to day challenges. It is interesting that you had driven
through Norhern Michigan just recently, we live just North of Petosky and have a house near South Bend so you are near us in
in spirit and also physically. I notice your replies to others and how encouraging you are to others needs. You are certainly a
blessing to us. We are doing fine and I work outside the home a few hours a day with caregivers present while away. So that
is a great thing for me in the way to cope. Probably one of the hardest to remember: the caregiver is not sick and need to go
on the best you can with living, seeing relatives, friends and etc. That is where the guilt comes in, afraid to be away: “something
might happen” while away. Please keep up the good work of encouragement, we are all in this to keep each other uplifted.
Thanks for your help and stay well!!
Ozys

Hi Ozys! Thanks for the kind words. It is good therapy for me to participate with other caregivers for sure!

I love your area a TON and I was just in South Bend for a football game since our daughter went to SMC and our niece was on a visit there to see if she wants to be a ‘smc chick’ too.

I look forward to staying in touch!

Any leaf color your way yet?

Scott

Hi Indiana Scott:
The colors are just coming on here with my oak just a little yellow before the brown comes on. How did you cope with the day to day? Did you have family in the area to lean on? My caregivers are the ones that I have. Since my husband is a veteran, he qualifies for home health care and drugs.
I must answer a lady that is looking for a caregiver. We go through the senior center here which is government sponsored and also supported by a
mileage which Michigan uses to support other activities in the county. There is a respite fund and also a care component available to others who
qualify even though they are not veterans. Since we are a very small community and everyone knows each other, we don’t suffer the problems
others do in larger cities. However good that seems, it is very lonely if your family is in Northern Indiana. Love SMC, my son’s wedding reception
was there a few years ago. Of course we are ND fans also. You have to be if you are from South Bend? Only kidding, no offense I hope. Nice
to hear from you and keep up the good work,
Thanks for listening,
Ozys

@ozys

Hi Indiana Scott:
The colors are just coming on here with my oak just a little yellow before the brown comes on. How did you cope with the day to day? Did you have family in the area to lean on? My caregivers are the ones that I have. Since my husband is a veteran, he qualifies for home health care and drugs.
I must answer a lady that is looking for a caregiver. We go through the senior center here which is government sponsored and also supported by a
mileage which Michigan uses to support other activities in the county. There is a respite fund and also a care component available to others who
qualify even though they are not veterans. Since we are a very small community and everyone knows each other, we don’t suffer the problems
others do in larger cities. However good that seems, it is very lonely if your family is in Northern Indiana. Love SMC, my son’s wedding reception
was there a few years ago. Of course we are ND fans also. You have to be if you are from South Bend? Only kidding, no offense I hope. Nice
to hear from you and keep up the good work,
Thanks for listening,
Ozys

Jump to this post

Hi Ozys! I think ND also stands for No Defense this year 🙂

Finding adequate caregiving help was a major challenge of my wife’s illness. In the early years I needed overnight care as I had to travel for my job. That was very hard. Very few would be willing to sleep over — even though we offered a separate bedroom and bath. Her brain damage made her have sky high anxiety and high activity levels. She was never combative and was always friendly, but also scared all the time. Due to her brain damage she adhered to a phenomenally rigid schedule. The same every day. Everything the same — same times, same clothes, same food, same beverages, same color lighter for each cigarette break, same words all day. No one really wanted to take on that kind of care. They wanted docile. I had several of our area agencies telling me they refused to provide care for my wife. Period. I finally lost my job when caregivers, who were scheduled, would simply not show up!

Once I was her full time caregiver those same agencies, even when she was in bed fulltime, refused to provide any services to her. Late in her care I also couldn’t find anyone, other than one CNA who would come help since she needed two-person transfers and the agencies who would work with us told me they had no one who was willing to do two-person transfers. .

So I did it all — chief cook, bottle washer, and caregiver. Every other aspect of our lives either fell apart or had to be simply ignored. The isolation brought on by caregiving was a brutal challenge for me as I was a fundraiser, so naturally a real people-person, and losing that was crushing at times.

Our grown children were strong and supportive in a huge way for both of us. My wife would feel tremendous guilt when they would visit since she did not want her illness to be ‘their issue’, but they kept in good touch every other way.

Sadly, family took a powder. In the 14 years of my wife’s battle my sisters never even entered my home. My wife’s siblings would come, but they came to ‘observe’ my care for her and report back to the others. There was no interest in helping, but a whole lot of willingness to judge and report what I was doing.

Same thing with the vast majority of our friends. They simply were too uncomfortable to interact with my wife or me due to her personality change. One old friend of hers from elementary school was a phenomenal support to her and one of my old colleagues was a champion for me. Unfortunately they both lived hundreds of miles away for provided a true lifeline for her and me.

The sense of abandonment my wife felt was a major reason she crafted her own ‘celebration of life’ service rather than having a traditional funeral, held it in our home, and even instructed me who to invite. It was an intensely sad time, but truly a celebration since the only people in our home were the people who truly cared about her.

Sorry I rambled far too long….I had a tough night and was happy to read you happy response!

Peace and strength

Hi Indiana Scott:
You truly are a hero, something all caregivers are in this fight to get good home care. So sorry you had such a bad response from even relatives!! All of our relatives live in either Illinois or Ohio and so far away as to be any help, the kids (his) don’t call very often, One is coming on the 7th and of course,
that is more work for me, (no sympathy, please). I had asked one of my friends if she would come up and spend some time with me and her reply was
that I couldn’t get out and go running around with her, so why come and visit. It is very hard to understand why people can’t get the point, that caregivers
need help all the time. Like your wife, I feel like I will not have the curious around at the passing. It is great that you had people come to your house for
a celebration. A really good idea.
Tomorrow, I have an appointment with the Veterans Adm., to suggest they get the Senior Center here to purchase a program so they can bill VA directly.
VA will not accept a bill unless it is on their program. (That’s government) We get six hours a week, but it is a respite thing which comes out of the local
budget and should be billed to VA. I could get 12 hours if the local people would just buy the program and also that would help other veterans in the
community.
Like you, I had been a fund raiser (American Cancer Society) and out of the house a lot, so is hard to be captive but have a lot of hobbies inside the house
and also am a clerk, for the township, and work at home.
It is great for you to write about your experiences and tell your story, your road was a lot harder than mine so far,
As far as the No Defense, I think I know what you mean, will they ever get it together, must keep track of them more (ND) miss being there for the games.
Hubby doesn’t like football, oh well, another day and so grateful for the good things we have,
Thanks for your help, it is good to hear.
Ozys

@ozys

Hi Indiana Scott:
You truly are a hero, something all caregivers are in this fight to get good home care. So sorry you had such a bad response from even relatives!! All of our relatives live in either Illinois or Ohio and so far away as to be any help, the kids (his) don’t call very often, One is coming on the 7th and of course,
that is more work for me, (no sympathy, please). I had asked one of my friends if she would come up and spend some time with me and her reply was
that I couldn’t get out and go running around with her, so why come and visit. It is very hard to understand why people can’t get the point, that caregivers
need help all the time. Like your wife, I feel like I will not have the curious around at the passing. It is great that you had people come to your house for
a celebration. A really good idea.
Tomorrow, I have an appointment with the Veterans Adm., to suggest they get the Senior Center here to purchase a program so they can bill VA directly.
VA will not accept a bill unless it is on their program. (That’s government) We get six hours a week, but it is a respite thing which comes out of the local
budget and should be billed to VA. I could get 12 hours if the local people would just buy the program and also that would help other veterans in the
community.
Like you, I had been a fund raiser (American Cancer Society) and out of the house a lot, so is hard to be captive but have a lot of hobbies inside the house
and also am a clerk, for the township, and work at home.
It is great for you to write about your experiences and tell your story, your road was a lot harder than mine so far,
As far as the No Defense, I think I know what you mean, will they ever get it together, must keep track of them more (ND) miss being there for the games.
Hubby doesn’t like football, oh well, another day and so grateful for the good things we have,
Thanks for your help, it is good to hear.
Ozys

Jump to this post

Hi Ozys. GOOD LUCK and good skills with the VA! Common sense is not so common!

I just took a walk on the beach to clear my head and lighten my soul. Did me good.

I agree it is odd how so many folks don’t ‘get’ much of anything about caregiving. The closest one person got to visiting was our town coffeeshop. About 2 miles from our home. They called to say I should meet them for coffee there. Said I couldn’t but could they make it here. Nope — ‘not enough time’! Sheesh!

Now onward …..

Scott

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