...some crazy people in your family cannot handle stasis.
My sister, who thinks she has "Medical Power of Attorney" for our mother, emailed today to see if I was leaning toward putting mom back in a nursing home. This after telling me the tremendous angst she feels for putting our parents in a home two years ago - she still owes it $20,000 because she didn't understand the costs at the time; didn't understand that Medicare/Medicaid would not pick up the tab.
Sis does not have medical power of attorney in my state - you actually have to live in this state to be eligible to serve a person who lives here - she doesn't even live in the USA.
So, in plain terms, I outlined my cash outlay every month for care of our mother, including the other benefits: the value of the Medicare-funded Home Health Nurse biweekly visits, as well as the value of the Medicare-funded Aide, two hours a day, provided by the Alzheimer organization; it comes to roughly $4,500 a month total, but a nursing home here, capable of caring for a quadriplegic, costs at least $12,000 a month.
Our mother has no assets. She is not eligible for funding that would pay for a nursing home until our dad has been dead three years (he passed away 18 months ago). I'm it. I am her only offspring with the physical, emotional, mental and financial wherewithal to support her.
It has taken me the last 18 months to figure it all out to where we have a routine, a nice home where an elderly-wheelchair quadriplegic can be comfortable and well-cared for, have normalcy, safety, decent aides for physical care, volunteers for a social life, and family, while maintaining my own job and responsibilities to my nearly-grown-up children.
I left my husband to accomplish all this because he did not want mom in our home - so I bought my own house, using my retirement assets and leaving him in the process.
In other words, I met the challenge. I think my dad would be proud of me, pleased that his choice of me to take care was the right one. He didn't willingly leave my mother, his life-long wife - it was always his plan to outlive her. Had he not taken such good care of this MS patient, his plan may have worked out. In my estimation, his faith in me was well placed.
I think all this is to say that I feel a bit angry tonight. How dare my sister broach the subject of change now! Now, when I feel like I can breathe easier, that I can look around and say, I can sustain this, I'm hanging in there, I have good support, I have learned a lot about how to negotiate the circumstances; mom is happy and comfortable.
How dare she attempt to make a change?
I am not buying into it. I am expressing the knowledge that she has no power, no legal standing. No doctor would allow our mother to be moved away from here now - she is too frail and this home is too good for her.
I acknowledge that I have allowed my siblings to use me to care for our mother at the end of our father's life - that none of them "came up to snuff," "could cut the mustard." Fact is, our dad chose me. Suck it up, Buttercup. Go mess with someone else's day - I'm happy and mom is happy.
Showing posts with label quadriplegia. Show all posts
Showing posts with label quadriplegia. Show all posts
Sep 9, 2011
Aug 14, 2011
My Mom is So Funny, page 6, Reunion
Mom got a phone call from a classmate, Mary Alice, who had attended the All School Reunion this weekend back in their old home town. Mom & her classmates are so up in years this small-town school doesn't hold a reunion for the class year, but for all students who wish to attend.
We heard the only ones from her class there were Marge, Mary Alice, and Edith.
I said I had never heard of Edith before (I thought I knew all her classmates) she said I wouldn't want to know her. This shocks me a bit because my mother, albeit adroit with her sharp tongue, has always been polite about people. She said Edith has no personality. I don't know what that means. More surprising, this is someone mom has remembered over all these years yet never mentioned.
Living with my mother the last year-and-a-half, I've learned more gossip about my parents' cohorts than I ever imagined possible.
She is so animated and happy tonight hearing about the reunion - expressing her regret to her friend that she now lives with me and could not attend. I was happy that she knows where she's at - that we couldn't go, but then she asked Mary Alice if the chairman had read her letter.
I asked what letter is that?
She says she wrote a letter on her computer to the chair, and had mailed it, but she wasn't surprised that he hadn't read it because the only people he cared about were the football players. Now I'm wondering what that implies.
Somehow, I think the social idiosyncrasies we are concerned about these days are not new.
Perhaps more scandalous in days gone past, perhaps not; it appears they were just tolerated a different way.
We heard the only ones from her class there were Marge, Mary Alice, and Edith.
I said I had never heard of Edith before (I thought I knew all her classmates) she said I wouldn't want to know her. This shocks me a bit because my mother, albeit adroit with her sharp tongue, has always been polite about people. She said Edith has no personality. I don't know what that means. More surprising, this is someone mom has remembered over all these years yet never mentioned.
Living with my mother the last year-and-a-half, I've learned more gossip about my parents' cohorts than I ever imagined possible.
She is so animated and happy tonight hearing about the reunion - expressing her regret to her friend that she now lives with me and could not attend. I was happy that she knows where she's at - that we couldn't go, but then she asked Mary Alice if the chairman had read her letter.
I asked what letter is that?
She says she wrote a letter on her computer to the chair, and had mailed it, but she wasn't surprised that he hadn't read it because the only people he cared about were the football players. Now I'm wondering what that implies.
Somehow, I think the social idiosyncrasies we are concerned about these days are not new.
Perhaps more scandalous in days gone past, perhaps not; it appears they were just tolerated a different way.
Aug 7, 2011
My Mom is So Funny, page 5
“Did anyone tell you they love you today?” I’m on my way out the door for a long motorcycle ride, saying goodbye to Mom. I ask her this every day.
Just a habit I have. I learned from my grandparents when I was 19 and very, very ill, being told I was loved made a tremendous difference at a difficult time.
My parents were too caught up in their problems to tell us they loved us – I’m sure they did but it wasn’t verbal and there weren’t any hugs, wah-wha-wah. In a past, less-charitable frame of mind I have believed they were both too selfish and self-centered – which has some basis, since they were both “only children,” coddled; their parents did an excellent job indulging and loving us grandkids, though, and well made up for it. A little bit goes a l-o-o-o-n-g way.
“Did anyone tell you they love you today?”
“No, probably not gonna happen.”
“I love you, Mom.”
Just a habit I have. I learned from my grandparents when I was 19 and very, very ill, being told I was loved made a tremendous difference at a difficult time.
My parents were too caught up in their problems to tell us they loved us – I’m sure they did but it wasn’t verbal and there weren’t any hugs, wah-wha-wah. In a past, less-charitable frame of mind I have believed they were both too selfish and self-centered – which has some basis, since they were both “only children,” coddled; their parents did an excellent job indulging and loving us grandkids, though, and well made up for it. A little bit goes a l-o-o-o-n-g way.
“Did anyone tell you they love you today?”
“No, probably not gonna happen.”
“I love you, Mom.”
Decisions, Decisions.
Should I stay abed or loll about in the easy chair?
It’s Sunday morning and I’ve already got Mom squared away for a couple of hours.
I usually get her out of bed at noon so she is in the wheelchair only ten hours or less – to prevent pressure sores, “bed sores” or decubitis. Bed sores are the bane of any caregiver; it requires constant vigil to make sure a pressure spot doesn’t stay red, blister or worse: to break the skin and go deep.
I've learned the hard way. I stole Mom from the nursing home because of a decubitis on her bottom the size of a salad plate that looked like leftover cherry pie at Thanksgiving and smelled worse. I say stole: it was with full permission of my dad and sister to bring her home because we felt we were paying $7,500 a month for minimal care; the staff was wonderful but the management just wanted our parents to sign their house over.
The decubitis was the least of my complaints, really, about their care.
Her multiple sclerosis prevents her from feeling the pain but the body works to heal just the same; for being 85 and having smoked for 66 years, she has lovely, incredible skin that is barely wrinkled. It heals beautifully with proper treatment, but I have learned it is much less work for me if I don’t let a pressure point develop. Sheepskin is wonderful, so is Desitin, as is the low-flow air mattress that actually leaks oxygen to her skin at a slow rate through the material.
Air is good for skin; moisture is imperative, as well as movement, hygiene, hydration, and nutrition; the treatment is those five items in a protocol.
I even developed my own wound gel to hold moisture and manage granulation – it is fascinating to watch the tissues rebuild themselves. I manage all this under doctor’s orders. I’ve been trained and supervised by certified wound nurses (amazing people, by the way).
But, back to me, should I stay lazy this morning?
The last thing a caregiver remembers to do is take care of him- or herself. How about I clean bird cages, clean the refrigerator, finish laundry, mop the floor, answer the mail, go for a ride, or best idea of all, read a book?
It’s Sunday morning and I’ve already got Mom squared away for a couple of hours.
I usually get her out of bed at noon so she is in the wheelchair only ten hours or less – to prevent pressure sores, “bed sores” or decubitis. Bed sores are the bane of any caregiver; it requires constant vigil to make sure a pressure spot doesn’t stay red, blister or worse: to break the skin and go deep.
I've learned the hard way. I stole Mom from the nursing home because of a decubitis on her bottom the size of a salad plate that looked like leftover cherry pie at Thanksgiving and smelled worse. I say stole: it was with full permission of my dad and sister to bring her home because we felt we were paying $7,500 a month for minimal care; the staff was wonderful but the management just wanted our parents to sign their house over.
The decubitis was the least of my complaints, really, about their care.
Her multiple sclerosis prevents her from feeling the pain but the body works to heal just the same; for being 85 and having smoked for 66 years, she has lovely, incredible skin that is barely wrinkled. It heals beautifully with proper treatment, but I have learned it is much less work for me if I don’t let a pressure point develop. Sheepskin is wonderful, so is Desitin, as is the low-flow air mattress that actually leaks oxygen to her skin at a slow rate through the material.
Air is good for skin; moisture is imperative, as well as movement, hygiene, hydration, and nutrition; the treatment is those five items in a protocol.
I even developed my own wound gel to hold moisture and manage granulation – it is fascinating to watch the tissues rebuild themselves. I manage all this under doctor’s orders. I’ve been trained and supervised by certified wound nurses (amazing people, by the way).
But, back to me, should I stay lazy this morning?
The last thing a caregiver remembers to do is take care of him- or herself. How about I clean bird cages, clean the refrigerator, finish laundry, mop the floor, answer the mail, go for a ride, or best idea of all, read a book?
Aug 3, 2011
My Mom is So Funny, page 3
We are training a new aide, a certified nurse assistant (CNA) for EM, my quadriplegic, 85-year-old mother who came to live with me 18 months ago.
Our new CNA is from Nigeria, so I see her pause and translate in her mind the things I tell her to do, or details about EM's care or preferences. I admire people who can come to a new country, learn a new language, and I assume a new profession. There are enough challenges in daily life without adding that whole lot to it.
I'm also looking forward to learning about her and what brings her here, and how she lived before.
EM is reticent with the new aide. People with her diagnosis (multiple sclerosis) I've been told, have difficulty with transitions, but I don't believe it, I think my mother is just stubborn, sedentary and set in her ways. She's always been like this. She also has a fast tongue which is how she tests you.
If you don't get the joke, if you can't take the insult, she'll just ignore you.
Well. We don't have a choice about it when aides change out. The agencies who provide the helpers through Medicare funding make the choices about rotating their people. I am grateful for the help because EM cannot be left alone anymore; it's a long story of why I do not want to put her back in a nursing home - I'll save that for another day.
So EM argues with me today in front of our new CNA. She insists the woman will get along with her, or she'll get along with me, but not with both of us. She's telling me to buzz off.
I'm wondering why she is being crotchety when she has refused to eat much the last few days. A family member had a birthday yesterday and well, we kinda-sorta had ice cream and cake over several days, so EM is full of what she prefers: sweets. Of course she doesn't want real food.
Our new aide is good, though, coaxing "Mum" into eating one more bite of breakfast egg, one more spoonful of soup at lunch.
When it is time for her to leave, she says goodbye, I'll see you tomorrow, and mom says,
"Is that a promise or a threat?"
"A promise or a threat!" Our new CNA, Gloria, laughs.
Her eyes sparkle and I know she's going to work out fine.
Our new CNA is from Nigeria, so I see her pause and translate in her mind the things I tell her to do, or details about EM's care or preferences. I admire people who can come to a new country, learn a new language, and I assume a new profession. There are enough challenges in daily life without adding that whole lot to it.
I'm also looking forward to learning about her and what brings her here, and how she lived before.
EM is reticent with the new aide. People with her diagnosis (multiple sclerosis) I've been told, have difficulty with transitions, but I don't believe it, I think my mother is just stubborn, sedentary and set in her ways. She's always been like this. She also has a fast tongue which is how she tests you.
If you don't get the joke, if you can't take the insult, she'll just ignore you.
Well. We don't have a choice about it when aides change out. The agencies who provide the helpers through Medicare funding make the choices about rotating their people. I am grateful for the help because EM cannot be left alone anymore; it's a long story of why I do not want to put her back in a nursing home - I'll save that for another day.
So EM argues with me today in front of our new CNA. She insists the woman will get along with her, or she'll get along with me, but not with both of us. She's telling me to buzz off.
I'm wondering why she is being crotchety when she has refused to eat much the last few days. A family member had a birthday yesterday and well, we kinda-sorta had ice cream and cake over several days, so EM is full of what she prefers: sweets. Of course she doesn't want real food.
Our new aide is good, though, coaxing "Mum" into eating one more bite of breakfast egg, one more spoonful of soup at lunch.
When it is time for her to leave, she says goodbye, I'll see you tomorrow, and mom says,
"Is that a promise or a threat?"
"A promise or a threat!" Our new CNA, Gloria, laughs.
Her eyes sparkle and I know she's going to work out fine.
Jul 27, 2011
This category is: My Mom is So Funny.
My mind has been afire tonight - Mom (who doesn't recognize her granddaughter, my daughter) wanted me to go through one of the picture albums the two have been putting together.
It is amazingly sorted to pictures of me and my grandparents. My sister had sent three large boxes of pictures from Mom's house last year, and volunteers and granddaughter have been working on this project, filling albums, for a while. She seemed to be able to gather memories and identify people in a way tonight that was more vibrant than it has been in some time. She was full of beans. Fiesty. We joked and laughed and made fun of the posers in the pictures. When she gets going, she makes me laugh harder than anyone can. Snark & Snide & So Refined.
Tonight Mom asked something about my paycheck. I said why, do you need some money? She says, only a couple of hundred. I said, why, did my brother call?"
She cracked up. Then she said I was mean. It is a long-standing joke about my ne'er-do-well brother. The woman is very witty - the original sharp tongue.
She may have an entirely non-functional body but her mind is cunning.
And cutting.
My mother doesn't brush her teeth in the morning, she sharpens her tongue, a stiletto tongue. This has been known to me at least since my first day in kindergarten.
I inherited my mother about 18 months ago, when my dad was dying. She is a quadriplegic due to multiple sclerosis - I am positive she has lived so long due to dad's diligent, attentive care.
Why he thought I was the proper choice of several offspring to take her on is beyond my ken. Mom & I never got along - no love lost here - but, we seem to manage now. Wonder of wonders.
Caregivers take on a hero's quest.
It is impossible, with no reward.
People will make up stuff about how blessed you are, but in their minds the real thought is, "glad it is him/her and not me."
Fact is, my parents have done me a favor, getting me to take this on, but more about that at another time.
This category, My Mom is So Funny, is going to be a blog chronicling her witticisms, but mostly it is about caregivers, caregiving, and any issue associated with eldercare, that is, the whole panoply of managing America's aging population.
The whole situation is just too crazy: the most reasonable thing to do, instead of growing infirm in the U. S. of A., is drive off a cliff.
It is amazingly sorted to pictures of me and my grandparents. My sister had sent three large boxes of pictures from Mom's house last year, and volunteers and granddaughter have been working on this project, filling albums, for a while. She seemed to be able to gather memories and identify people in a way tonight that was more vibrant than it has been in some time. She was full of beans. Fiesty. We joked and laughed and made fun of the posers in the pictures. When she gets going, she makes me laugh harder than anyone can. Snark & Snide & So Refined.
Tonight Mom asked something about my paycheck. I said why, do you need some money? She says, only a couple of hundred. I said, why, did my brother call?"
She cracked up. Then she said I was mean. It is a long-standing joke about my ne'er-do-well brother. The woman is very witty - the original sharp tongue.
She may have an entirely non-functional body but her mind is cunning.
And cutting.
My mother doesn't brush her teeth in the morning, she sharpens her tongue, a stiletto tongue. This has been known to me at least since my first day in kindergarten.
I inherited my mother about 18 months ago, when my dad was dying. She is a quadriplegic due to multiple sclerosis - I am positive she has lived so long due to dad's diligent, attentive care.
Why he thought I was the proper choice of several offspring to take her on is beyond my ken. Mom & I never got along - no love lost here - but, we seem to manage now. Wonder of wonders.
Caregivers take on a hero's quest.
It is impossible, with no reward.
People will make up stuff about how blessed you are, but in their minds the real thought is, "glad it is him/her and not me."
Fact is, my parents have done me a favor, getting me to take this on, but more about that at another time.
This category, My Mom is So Funny, is going to be a blog chronicling her witticisms, but mostly it is about caregivers, caregiving, and any issue associated with eldercare, that is, the whole panoply of managing America's aging population.
The whole situation is just too crazy: the most reasonable thing to do, instead of growing infirm in the U. S. of A., is drive off a cliff.
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