GIRL'S ROOM: Women as caregivers

[VanKitten]

Roamingkat, did you try the VA?   Was your father a vet?


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I've talked to the VA.  Because he served only 2 years .. At the end of WWII....he isn't eligible for their assisted living or nursing homes.   

They have offered to set him up with primary care in-home visits.   They will send medical personnel to him....averaging about one visit every couple of months.     Blah...certainly not enough help to even notice.    Wish my only problem was driving him to a doctor!  

I signed him up for a volunteer senior companion program...waiting list is averaging 3 months.  I signed him up for a volunteer transport assistance program..he needs a doctor signature that he needs the help...so now waiting a couple months for the doctor appointment.

That's it.    Everything else is self pay till he is in poverty then Medicaid will start to pay.   At which point he will be in a nursing home because he won't have the resources to live independently any more.   Same with Mom.  

I will do everything I can to keep them living in their home as long as I can...but right now, it looks like the resources will run out in less than 3 years....provided I can be the majority of the home care and not have to pay for that.

 

[SoulRaven]

I have looked at residential/day services for my 30 year old son with Down syndrome and have come to realize that because of their reluctance to take him and his obvious horror at some of them, if I am to do this, he will be part of the equation at least until I can move around and find something that is desirable. Also, in splitting "assets" rather than one larger senior dog, I may be getting both.

I am getting a little burned out at road blocks to the lifestyle, one I have planned for almost 30 years now since I realized it was a lifestyle. But, I just have to do some reorganizing in my thoughts. I have the advantage of always having been and still am someone that has the "Pollyanna Complex" - if you aren't familiar it has to playing the "glad" game, finding the positive, "It is raining, but at least it isn't freezing rain." "I have to severely tweak my plans, but I don't have to end my plans."

 

[anewbiewannabe]

I am getting a little burned out at road blocks to the lifestyle, one I have planned for almost 30 years now since I realized it was a lifestyle.  But, I just have to do some reorganizing in my thoughts.  I have the advantage of always having been and still am someone that has the "Pollyanna Complex" - if you aren't familiar it has to playing the "glad" game, finding the positive, "It is raining, but at least it isn't freezing rain."  "I have to severely tweak my plans, but I don't have to end my plans."

I think it's rare for anyone to be able to pursue their dreams without being able to find some positives so they can perservere through the down times. Right now it's hard for me because there are very few things to find positives in---probably why I dream my van life even if it turns out I won't be able to do it---I'm still hoping and doing what I can. The end of Polyanna's story, and her gift, was that the people who were around her started finding more positives, IIRC.

I was the caregiver in my extended family. Over time I took care of my grandma, my mom, my dad, my husband. I'm grateful I was able to do that, but it left taking care of me on hold because of my upbringing. I'm working really hard to find a way to not put my daughter in a position where she feels like she should pause her life to take care of me. I'd rather be in a horrible state run nursing home than do that.

Now that I've made it through I can't imagine how challenging it is for people to be in that caretaker position, especially when wanting to pursue this lifestyle. My dream of it was buried under years of other things completely forgotten until now that it's become less of a choice and more of a necessity if I want to create my best future possible. I was so grateful to find these forums after I had uncovered the dream and planned it on my own for a couple of years. I had no idea there were others like me and it's given me more courage.

We are all AMAZING.

 

[RV Nomad Bound]

Nora:  I've been caring for my son with Down syndrome almost 24/7 for the last 30 years, even homeschooling.  We tried programs that didn't work and now found one that does, a day program.  He is lined up to enter residential so will leave the house, maybe if this doesn't fall through.  Knowing this was coming, I have been trying to return to who I am, the person who had dreams and desires that were buried by having to put my son first.

I'll be 62 years old this summer and it is my turn.  I'll have limited retirement but have no debt and some savings.  I hope to volunteer at public lands for a campsite, at least part of the year and most likely boondock the rest of the time.

There will be a transition period but have some plans/goals.  While caring for my son may have defined me in the eyes of others, it never really defined me in my own mind.  When I worked it never defined who I was but was what I did to get money, what was necessary.

Everyone is sort of lost for awhile as they adjust to a new lifestyle, that is part of the fun of it.

Cathy

 

[jaxtonsgram]

Roaming Kat?  just wondering how things are going with you. these first holidays without a loved one are hard.  all you other caregivers try to take care of yourself.

Nora

 

[SoulRaven]

anewbiewannabe: Actually, our family members were going to all go in different directions but we could not find a suitable residential setting for our son with DS. Our house has sold. We just moved from a pop-up tent camper to a Hi Lo 22' travel trailer 2 days ago, just before an artic thing came in, had to defrost the door handle before taking the dogs out............ Services seem unusually poor. I was just very concerned that they did not understand "functioning" levels and here they resort to medications rather than positive behavior methods as my son's case manager said when it comes to behaviors "there is a medication for that". My son is non-verbal which is of great concern, because in a bad situation, he would be unable to ask anyone for help. Many of the personnel that work with people like my son here have no real training and remember the days, as the last one related "if the client didn't want to shave, we hogtied them and shaved them anyway, now they have rights" and I'm thinking "they always had rights and you simply ignored the fact".

I have a great deal of concern not only for my son with DD, but everyone with disabilities. That part about "They have rights now." really said everything they needed to say to me. I am very picky and very pro underdog. I also get tired of "No one will ever take care of your son like you would." because, if I were taking care of your son/daughter, they would get every bite as good of care from me as my own child.

One big whig said "You have expectations that no one could meet." We are talking about basic needs of human beings, it isn't rocket science!

I am hoping in time to find a program that is appropriate, not a "gets him by" program. They just hope parents are desperate enough to place their kids in these contracted services that need a deep cleaning.

 

[TrainChaser]

I am thankful that I was able to take care of my Mom for her last eight years, for the same reasons that SnowGypsy mentioned. Assisted living places tend to spend their money for 'show', and pay their workers minimum wage.

 

[Jannette]

Last night, with my two dogs on either side of me chewing on their rawhide bones (of which I give them when I haven't had time to walk and play with them), I began rereading Bob's book . . . it was one of those days.  I woke with a touch of what I refer to as "caregiver's hangover" this morning . . . which is prioritizing the list of things that need to be done today for others . . . which I fell asleep thinking about last night.

At the end of my Mother's life, I became "that bossy lady who lives at the end of the hall" Lol!!!  (((Hugs)))!!! I don't blame her . . . I was!  She needed around the clock care due to the disease that ultimately took her life . . . I was the "lead" caregiver and trained all who came through our front door . . . she passed at the age of 69 (diagnosed at age 31 . . . I was 10) . . . in her home with my Father and I  . . . my three sisters never participated over the yearsssss of her suffering . . . arriving from a dozen states away on holidays treating this abode like a Bed and Breakfast, husbands and children in tow.  For both of my parents happiness . . . I always made sure the house was prepared for them, the refridgerator full, and made the Holiday "happen" . . . anyway . . . too many details . . . I'm finished with "getting down into the weeds".

Not only was I "the bossy lady at the end of the hall" (my bedroom location), Bless her!!! . . . over the years my sisters labeled me as a "brown noser", " "control freak", "obsessive compulsive" and a number of other things that I won't put into print.  Up until just a few short years ago, I used to examine myself and motivations for becoming a "caregiver" as if something was wrong with me!!!
I still have my moments when I yearn not only for my sisters' acknowledgment and approval rather than their condemnation and name calling but society's as well.  Every day I remind myself not to allow my negative judgement of them for negatively judging me . . .  to be reflected in my behavior, body language, tone of voice and thought . . . because . . . in doing so it's a reflection of me doing the same to me . . . again . . . double whammy!

There is nothing wrong with those of us who are caregivers . . . nor of those who are not . . . that last part is what I struggle with the most , now . . . I judge them for judging me.  Believe me, my anger and self-righteousness towards my sisters for not helping get's the best of me at least once a day . . .  because . . . now I am doing for my father what he and I did, together, for my mother.  He's not on his "deathbed"  . . . but . . . 

Here's something very interesting and sad . . . I've followed my heart with extreme struggle and difficulty . . . 
but . . . each of my three sisters, within the past three years . . . have been diagnosed with either mental illness (I've become "You're not the Mother" . . . shouted at me by my sister , not my niece . . . "mother"), disease, or cancer . . . prognoses?  in the grey area.  Just as Bob reiterates in his book . . . stress is deadly . . . especially . . . I've concluded on my part . . . mental, emotional, and Spiritual stress, ie: the squelching of each aspect in favor of family and societal approval and chasing materialism.  My heart-felt struggle will continue . . . I think it's helped me avoid dis-ease.

I do not want to befall disease filled before I actually "hit the road" . . .your sharing of your difficulties has bolstered me and I deeply Thank You for that.

P.S. I always wake with deep, wandering thoughts as I sip my coffee each morning . . . please take it with a grain of salt, Lol!!!
P.P.S.  Does that sound like an apology?  Caregiver syndrome.

 

[TrainChaser]

"There is nothing wrong with those of us who are caregivers . . ."

And where would the world be without caregivers?

 

[Turtlelady]

Hi. I would like to refresh this thread for several reasons. First, I would love to hear an update from the caregivers who previously shared a part of their stories, and thank those who offered kind support. As you may guess, I am currently a caregiver. I attended RTR 2018, my first, while my husband remained in KY safe and well cared for in my absence. I'd like to share a bit of my story, as encouragement to others who may need a nudge to do whatever you can to step out in the direction of your road tripping dreams, even though you may not be able or ready to do it entirely as you would have liked to do. I didn't go to RTR in the way I had hoped, which would have been in my new van, sightseeing leisurely on the way out, and until I wanted to come home. But, I got there for the entire event and it was a success beyond my imagining. I am very encouraged for my future travels. My husband and I bought a van together, guided by the CRVL videos and forums. We made a confident purchase after months of research and test drives of a wide range of vehicles. A minimal "just for now" build to got us on the road in October for a relatively leisurely 3,000 mile road trip through 7 states to visit family and friends on the way to an engagement celebration. Previously tent campers and backpackers all our lives, we learned to use the Allstays App to find suitable sites for van parking regardless of where we were when we needed to be off the road. We did driveway surfing, WMAs, and Wal Mart/Cracker Barrel/Pilot/Flying J parking lot camping as a trial of the new options a van offers beyond the tent camping style we already knew well. Also it was a trial run to see how my husband felt about traveling as a van dweller with advancing Parkinson's disease. He can no longer drive. After this trip he was to tell me candidly if he wanted to continue the trip westward in January to go to RTR with me. He was a trooper in facing his anxiety and discomforts, striving to be as helpful as he could to me as the sole driver. It was invigorating for me, but terror for him much of the time. At this stage of his life and medical challenges, he has no interest to be a van dweller, or to travel at all from home comforts again except as needed for important family events and then only with suitable indoor accommodations. I am disappointed, but respecting his decision. I also am committed to respecting and meeting my travel needs and retirement goals, too, without feeling guilty. I will plan future travel as a van dweller either alone or with friends, while planning carefully for his needs and desires to be met in my absence. I have supported his extensive adventure goals and his desired career, which he loved and worked at until he retired at age 67 when his Parkinson's symptoms finally interfered too much with his work ability. He encouraged me to attend RTR with a friend and tolerated the planning by others for his care in my absence. But by the time I gathered the resolve to plan for alternate caregiving and go alone, it was too late and too daunting to make the drive there. Instead I made plane reservations to meet a friend, her cat and her motorhome in Phoenix. Friends and family here came out of the woodwork to help make it happen successfully on all fronts. Just leaving home alone and arriving in Phoenix was a huge win! My friend and I made it to Q the night before the start of RTR: A dream come true. RTR was a cornucopia of wonderful possibilities; Bob Wells and friends had planned so well, we had only to choose wisely and not overdo ourselves! I am grateful to the many folks who made it delightful. There are so many ways to do RTR right! I had fears about the crowds expected. I feel the carefully enforced structure and scope of the event made it possible for newbies like me to dip in and find my desired level of participation safely and peacefully. My friend and I agreed ahead of time what our personal goals and group fall back plans would be, and carefully checked in each day to see that each was happy to stay another day. The time passed incredibly fast. I plan to drive my own van to RTR next year, and plan to enjoy local shorter R & R trips often until then. Who knows what will actually happen. My dreaming of adventure will continue, encouraged by wonderful new memories to give me hope. TurtleLady

 

[SoulRaven]

My son entered a day program in June 2017 with the intention of going into the group home that program was to open. In September, they decided not to open the group home, currently pursuing a HHS civil rights complaint against the KS Dept of Aging and Disability but that will come of nothing, never think that a "protected" class is ever "protected", it is "feel good" legislation, have seen it many times in "non" action.

So, my choices are either continue with my plan with my son in tow, or not. Huge decision, but I try not to think of it that way. Have narrowed down my choice of trailer to very basic: http://www.escapadecampers.com/alpine (bed in huge and could easily be divided into 2 separate areas and am currently following the blog of a couple who are in the non "standie" unit made by the company with the other choice being the T@B with wet bath option (bed can be split for 2 twin with mods). Having been a camper for about 35 years, I like the basic stuff, much easier to maintain.

I guess that challenge is good, keeps the mind active, but sometimes.................

 

[Annie W]

we could not find a suitable residential setting for our son with DS.  Our house has sold.  We just moved from a pop-up tent camper to a Hi Lo 22' travel trailer 2 days ago, just before an artic thing came in, had to defrost the door handle before taking the dogs out...
Services seem unusually poor.  I was just very concerned they did not understand "functioning" levels and here they resort to medications rather than positive behavior methods, as my son's case manager said when it comes to behaviors "there is a medication for that".   My son is non-verbal which is of great concern, because in a bad situation, he would be unable to ask anyone for help.
 Many of the personnel that work with people like my son here have no real training and remember the days, as the last one related "if the client didn't want to shave, we hogtied them and shaved them anyway, now they have rights" and I'm thinking "they always had rights and you simply ignored the fact".  

I have a great deal of concern not only for my son with DD, but everyone with disabilities.  That part about "They have rights now." really said everything they needed to say to me.  I am very picky and very pro underdog.  I also get tired of "No one will ever take care of your son like you would." because, if I were taking care of your son/daughter, they would get every bite as good of care from me as my own child.

One big whig said "You have expectations that no one could meet."  We are talking about basic needs of human beings, it isn't rocket science!

I am hoping in time to find a program that is appropriate, not a "gets him by" program.  They just hope parents are desperate enough to place their kids in these contracted services that need a deep cleaning.

Snow Gypsy, I understand every point you made, I do. - Aside starting care at age 9, I spent another 37 excruciatingly long years as a licensed nurse in almost every medical specialty, starting with hi-risk prenatal, nic, peds, med-surg, psych, ccu, nicu, geriatrics, etc. Too I accepted full responsibility for an AFH (the state had prior threatened to close); but less than a year later on the Surveyor's return, she could barely believe the transformation... & she gave this facility a flawless Report.
Before I started there, they had a foreign housekeeper who when I asked her for the BS-records, she said "What is bloodsugar mean?", &
she combined everyone's meds, & these poor dementia clients could swallow whatever color & shape they liked that day. Horrific !!
BUT
I got the place in order such that their families wrote me 14 letters of highest recommendations. The best part of course was the astounding recovery of these lovely   ladies, and you bet each person was "my :heart:  family" as sure as my own mother when I cared for her.