BS: Eldercare

Subject: RE: BS: Eldercare
From: billybob
Date: 16 Jun 13 - 06:40 AM

Sending love to you and your wife Joe, Will keep you both in my prayers,
RIP Valeria, you were truly loved.
Wendy

Subject: RE: BS: Eldercare
From: maeve
Date: 15 Jun 13 - 06:18 PM

Joe, there are quite a few messages for you and Christina in the "Jane's Rainbow" thread.

Subject: RE: BS: Eldercare
From: Claire M
Date: 15 Jun 13 - 10:05 AM

Hiya,

I'm the caree rather than the carer, but thought I'd put my 2p in.

Try & get a copy of 'Inside I'm Dancing' & watch the Torchwood ep 'Fragments'. I've been described as "half-disabled, half-not" & been mistaken for someone who has become disabled later in life.

Nursing homes aren't generally very good – i've been in a few for Respite & they seem to be more about what's convenient for the staff rather than the patients, & some staff have been very nasty. My parents said if they hadn't already got a holiday booked I'd've gone straight home. They cared for me tirelessly, & they always drummed it into me that it wasn't all about me.a

So I/we deliberately chose a care home without nursing. I don't love it, but nor do I hate it. Living here I look, act & sound normal. I see residents & staff as adopted family (I've always seen carers as adoptive relatives anyway). What I need might change but I don't think it will that drastically.

There are still some things that need straightening out.

"It won't be forever, it'll just feel like it."

Subject: RE: BS: Eldercare
From: Janie
Date: 15 Jun 13 - 06:50 AM

My condolences to you and Christina, Joe.

Janie

Subject: RE: BS: Eldercare
From: maeve
Date: 14 Jun 13 - 03:52 PM

Well done indeed, Joe and Christina. What a team you made with Valeria! I'd wager her smile will linger in your memories and her remembered love will be with you as long as you live.

Maeve

Subject: RE: BS: Eldercare
From: Phil Cooper
Date: 14 Jun 13 - 08:31 AM

May she rest in peace, Joe.

Subject: RE: BS: Eldercare
From: Sandra in Sydney
Date: 14 Jun 13 - 07:24 AM

RIP Valeria,

Subject: RE: BS: Eldercare
From: GUEST,mg
Date: 13 Jun 13 - 10:25 PM

may she rest in peace..and when you are up to it, it would be good perhaps to write her life story, complete with as many of her ancestors as you know, and put it on an ancestry site so her relatives might happen upon it in the future or others can know of her life.

Subject: RE: BS: Eldercare
From: Joe Offer
Date: 13 Jun 13 - 04:55 PM

My lovely mother-in-law, Valeria Slowick, died today, sometime after midnight. She was 98 years old, and she lived a full and wonderful life. The last two years were difficult for her and for us, but I'm glad we were able to keep her at home. We had some wonderful caregivers to help us with her over the last year.

She was in hospice the last two weeks, and the medications helped make her journey to death a peaceful one.

My wife Christina got me at 3 AM, and told me her mother had died. We sang "I'll Fly Away" for her, and I prayed the beautiful prayers of the Office for the Dead. Then we toasted her with fruit juice and slept in the living room with her. Today has been a very sweet day, a steady flow of visitors and phone calls. I was really moved by all the women who came to say goodbye, to touch her or kiss her one last time, to say prayers with her from a variety of faith traditions. I was the only man - I guess I have to admit that I live in a world of women - but it's a wonderful world.

Next week, we'll take her to Rhode Island for a good, Polish funeral. She doesn't have much family left alive, but that's what she wanted. May she rest in peace. Christina and I loved her very much, and she loved us. She was especially proud of her only grandchild, Joshua, who graduates from college on Saturday.

It's been a little over twelve hours since she died, and her body will be leaving us within the hour. It's quiet and peaceful in the house now, and the last visitor has left Christina and me alone. Bless you, lovely Valeria. I'll miss your smile, and the love you gave us.

-Joe-

Subject: RE: BS: Eldercare
From: Phil Cooper
Date: 11 Jun 13 - 03:07 PM

My sympathies, Joe. When my dad was in hospice for cancer the last few weeks at our house, I brought my guitar in and played for him. It seemed to comfort him. I wound up singing Lay down Brother, that one verse over and over again for him. He was very religious so I believe it was a comfort to him.

Subject: RE: BS: Eldercare
From: GUEST,.gargoyle
Date: 11 Jun 13 - 03:36 AM

A helping hand from a woman in a neighborhood church (10 dollars cash) each morning for two hours....to help with dressing, and bathing and breakfast can be a real God-send. It helps all involved.

Sincerely,
Gargoyle

in lucid moments record an oral history.

Subject: RE: BS: Eldercare
From: Joe Offer
Date: 10 Jun 13 - 09:46 PM

I don't do much of the work in caring for my mother-in-law. My wife Christina is so competent, and I feel more-or-less useless. But once a day, Christina takes the neighbor's dogs for a walk in the woods, and I'm left alone with my mother-in-law. In the quiet, I listen to her breathe, and sometimes she cries out. She's on morphine now, almost finished on her journey. But a few moments ago she was distraught, and trying to say something in her half-sleep. I went and sat next to her, not knowing what to do. So, I sang "I'll Fly Away" with tears in my eyes, hardly able to sing. She must have likde it, because she settled down and she's peaceful now.

It reminds me of the first time I sang that song here in this house. Christina's husband Jim was one of my best friends, and he was dying of colon cancer in 2001. I came here every few weeks while he was dying. Three weeks before he died, we sat on a park bench by the pond outside, and we sang "I'll Fly Away" together. A little while later, Jim took my harmonica from me and played "I'll Fly Away" beautifully. I sang that song at his funeral. I can't believe I got through it without breaking down in tears.

May my dear friend and mother-in-law fly away in peace to a better place, where she can fly with the angels. I've learned a lot from her and from Jim on their journeys toward death.

-Joe-

Subject: RE: BS: Eldercare
From: olddude
Date: 06 Jun 13 - 11:14 AM

I am so sorry Joe, just went through it with my mom and now my aunt Gracie is in a home and dementia has taken over. I have no advice, I just visit and try to get her to know me again .. It is very hard for sure. My mom went downhill fast. She was fine until the last 6 months before her passing ..

very difficult. You are in my prayers

Subject: RE: BS: Eldercare
From: Kampervan
Date: 06 Jun 13 - 08:12 AM

Hang in there Joe.

I did the same for my mother-in-law, none of her family could handle it emotionally, so it was just her and me at the end.

It was so difficult at the time, but I am forever glad that I was there and I like to think that she felt easier for it, although I don't think that she was really aware of what was happening.

Best wishes

K/van

Subject: RE: BS: Eldercare
From: Joe Offer
Date: 05 Jun 13 - 08:44 PM

I certainly wouldn't question anyone who chose to send an aging family member to assisted care. My wife is a chiropractor, and she is unusually well-qualified to care for her mother. Still, the last two years have been hard work, and my wife had to quit her job. We have hired outside help over the last several months, and that has taken off some of the strain.

Mo suggests a cordless doorbell. We had a handbell, and a cordless doorbell - they worked very well, but after a while, we took it away because my mother-in-law was ringing it constantly at night and we couldn't get any sleep. It felt bad to ignore her calls, but most of the time she had forgotten what she wanted by the time we got there. The main problems was that my mother-in-law would get confused and frustrated at night, and she couldn't sleep. Finally, the doctor gave us a prescription for valium, and that helped her settle down. But then she got into hospice, and they gave her a different relaxant that works even better. So now she's sleeping most of the time, but at least she seems to be at peace. It was hard to see her so agitated and confused, and I'm so glad we found a solution. I wish we had been able to do that earlier.

So, now we're keeping vigil and not leaving her alone, because we don't want her to die alone. We've had a number of people stop in for a final visit, and we've hired extra help.

It will be a relief when this is over. She's lived a good 98 years, and I think her time has come.

-Joe-

Subject: RE: BS: Eldercare
From: Allan C.
Date: 05 Jun 13 - 08:13 AM

One of the hardest decisions I ever had to make was the decision to place Mom in an assisted care facility. Despite my many years of hospital geriatric care experience, I finally had to admit to myself that Mom needed more than I was capable of giving her. I knew from the outset that sending her to a nursing home was tantamount to signing her death warrant. (The average nursing home residency is about a year and a half.) Mom maintained that statistic. I draw comfort in believing that I delayed her demise by caring for her in her own familiar surroundings for as long as I did.

It appears that you, Joe, have traveled that same path. I admire what you were able to do for your MIL and that you were able to make the decision you made as to her welfare.

Subject: RE: BS: Eldercare
From: Mo the caller
Date: 04 Jun 13 - 05:07 PM

Way back in January Bat Goddess said
"I'm constantly "on" listening -- and interpreting -- every noise that eminates from the room he's in. He can't yell for help if he gets into trouble."

One of the cheapest and most useful things we bought while looking after my MIL was a cordless doorbell. A little button at hand, the receiver in whatever room I was (or even in the garden). It meant we could relax - not having to run in everytime someone on TV shouted. And one of us could have it in their bedroom while the other would be on 'getting up early' duty.

It's not easy, you do it because you think you can do better than paid 'care' by strangers. But towards the end we started wondering if she would be more comfortable elsewhere. They would have given her more pain relief - we couldn't because it left her too floppy to help herself. Not much of a life either way, by then.

Best wishes to everyone in that situation now.

Subject: RE: BS: Eldercare
From: Sandra in Sydney
Date: 04 Jun 13 - 12:41 AM

Joe - best wishes for Christina & yourself in this time. Love to you all

John - give my best wishes to Lin, & have some yourself!

sandra

Subject: RE: BS: Eldercare
From: JohnInKansas
Date: 03 Jun 13 - 07:01 AM

Joe started things off with a question about "lifting devices."

Some years ago I started acquiring lifting devices for handling stuff that I used to just toss around, but now I'm looking for devices for lifting the lifting devices that I can no longer lift.

With Lin's recent stroke, I am anticipating some need for a way to "elevate" her, and have recently been studying on modifying a High Lift Riding Mower/ATV Jack that's intended to pick up both wheels on either axle of a half-ton small vehicle to picking up one little female.

A four foot long "bar" is intended to carry two "wheel baskets" to pick up the vehicle wheels, and cutting the bar down to about 20" to put ONE BASKET in the middle was fairly simple, and I figure That a flat 20" square "plate" on the lift arm will give me a lot of versatility for getting her up to seat level in my truck and maybe for tossing her into the bathtub and such. It's still a work in progress, so success isn't fully guaranteed, but it's $80 for the lift plus about $30 for some nice little locking castors, against $870 for the cheapest remotely similar "medical" lift I could find.

Seemed like worth a try, and she won't be out of rehab for a week or two so I've got a little time to play with it. Fortunately her progress so far indicates she'll have some ability to "assist" the moves she'll need help with for the immediate future. "Make-do" methods are much more difficult as patient capabilities decline.

Most such "shop lifts" are limited to about 12" lift, but this one gets almost two feet of travel, and if it doesn't work out my kid says the scrap yard will give her $15 for the *#@(^&$ thing if I give it up.

John

Subject: RE: BS: Eldercare
From: Joe Offer
Date: 03 Jun 13 - 02:32 AM

Gee, I can't believe I was asking about this way back in January! Now it's June, and my mother-in-law is still hanging on. She was admitted to hospice last week, and I think she may die any day now. Her doctor made a house call - one of the wonderful things about living in a rural area, is that doctors still do make house calls. My wife asked how long it would be, and the doctor said he thought four years ago that my mother-in-law had just a few weeks to live.

But we're carrying on, keeping the vigil. It's tough work, but it's worth it. I'm glad we didn't send her to a nursing home.

-Joe-

Subject: RE: BS: Eldercare
From: GUEST,Dharmabum
Date: 13 Jan 13 - 02:30 PM

Thanks Janie,
The respite is there on occasion.
Although,it involves a large amount of preparation to obtain it.
In short,This has changed our lives dramaticaly.

DB.

Subject: RE: BS: Eldercare
From: Lizzie Cornish 1
Date: 13 Jan 13 - 09:34 AM

I don't want either of my children to care for me when I can no longer manage to care for myself...and to be honest, when that time comes, I think I'd far rather just take myself out under the stars on a very cold night and stay there until the cold...and the stars...took me away.

I would *hate* to be unable to get out of bed or keep myself clean, and, heaven forbid, if I had a stroke or some such sudden life-changing illness, then I'd just refuse to eat food and turn my face to the wall, for no way would I want a life that was NO life. Nor would I want my children to see me that way, nor for others to have to care for me that way either..

Just give me a bottle of whiskey, some pills, and lead me to the Stars....

Subject: RE: BS: Eldercare
From: Anne Lister
Date: 12 Jan 13 - 05:24 PM

We had my father in law living with us for the first four years of our marriage, which was far from easy although he didn't need too much personal care from us. He did, however, make all kinds of other demands on our time, patience and tolerance, which means I am full of admiration for anyone who is a full-time carer for anyone else. Towards the end of his life he was becoming more and more dependent on us and we were getting as much assistance as we could from the local services, some of which was extremely disruptive and invasive of our privacy.
With my parents, now both very infirm and frail, we took the decision between siblings that the only solution was residential nursing care. This was, and continues to be, heartbreaking but we couldn't see any alternative that was affordable either in money terms or on a personal level. Today, having visited them and discovered them both to be either in pain or unwell and therefore finding communication difficult in the extreme I am grateful they are getting the best care we could find for them, even if this wasn't the way any of us thought their lives would be.
On a purely practical note - the best way for my parents to make transfers between chair, bed and toilet these days is a device known as a Sarah Steddee (or some such spelling)... it does rely on them having some strength in their upper arms, however. My mother absolutely hated the hoist previously used in the nursing home which used fabric "slings" to support her and made her feel like a sack of laundry.

Subject: RE: BS: Eldercare
From: Janie
Date: 12 Jan 13 - 04:30 PM

dharmabum, thanks for checking in. I've wondered how you and your daughter are faring. I hope you have 3-D respite and support.

Subject: RE: BS: Eldercare
From: Janie
Date: 12 Jan 13 - 04:12 PM

Words do matter, Kevin, and I understand your point. It is one of the problems I have with what has happened with the language from TA.

I am not intending to be quarrelsome. Joe's post is obviously personal and familial, a rare occurrence on the public forum from this lovely and private man. And I am a bit of a mother hen, perhaps protective where it is not needed. I don't want to detract further from the topic.

Subject: RE: BS: Eldercare
From: McGrath of Harlow
Date: 12 Jan 13 - 01:18 PM

My point was, before my father-in-law died at 98, when we went to see him and took him out and so forth, it wasn't about eldercare, it was family life. The same way when I was pretty ill a couple of years ago with operations, that involved my wife having to do stuff for me, more family life.

I think words matter about things like that. They shape the way we think.

Subject: RE: BS: Eldercare
From: GUEST,dharmabum
Date: 12 Jan 13 - 10:46 AM

Thal last post was me.
Forgot to sighn in.

DB.

Subject: RE: BS: Eldercare
From: GUEST
Date: 12 Jan 13 - 10:44 AM

I wish I had some helpful advice to offer you Joe.
If I did I would surely apply it to my own situation.
I am the sole caregiver for my 33 year old daughter with a brain injury.
I can absolutely relate to the feelings of guilt that your dealing with.
There's not a day that goes by that I'm not confronted with this internal conflict of doing everything in my power to help her,& the feeling that I haven't done enough.
I can say,at least for me,the one thing that is the most important quality in our lives is,PATIENCE.

DB.

Subject: RE: BS: Eldercare
From: Lizzie Cornish 1
Date: 12 Jan 13 - 10:06 AM

"...What it's really about is help and respect and friendship."

In an ideal world, yes.

Sadly, for many people who are left to be sole carers it can turn into something totally different.

Subject: RE: BS: Eldercare
From: ChanteyLass
Date: 11 Jan 13 - 11:38 PM

Joe, I read this thread last night and didn't comment because the level of care I gave to my dad and, later, an uncle, never reached the level that your MIL needs, so I have no suggestions to make things easier. However, I decided to check in tonight to say that my heart goes out to you, your wife, and your mother-in-law.

Also, I can say that during a three-month hospitalization that included extensive rehab, I worked with both a PT and an OT. There was a lot of overlap between their areas of expertise, but I am glad I had the help of both. And sometimes I was hoisted and did not find it awfully uncomfortable even though I was very overweight. It might be harder on a thin person who has less natural padding. If you do get a hoist, perhaps there is a way to add padding to it to make it more comfortable.

Subject: RE: BS: Eldercare
From: Janie
Date: 11 Jan 13 - 11:03 PM

fwiw, Kevin, I don't think this is a thread in which to quibble about nomenclature.

Subject: RE: BS: Eldercare
From: Janie
Date: 11 Jan 13 - 10:07 PM

Well, Joe, no matter what the PT says about herself, if you are scared when you get your MIL out of bed, then she's not meeting your needs. Leeneia, to the extent that assertion is a generalization, I have to disagree.

I think there comes a time, sometimes paying out over an extended period, when a family has hard choices to make, and those choices are going to be different in every family and in every situation. At end of life, there are sometimes choices to be made between quality of life and safety. It is not the job of the hired helpers, be they PT's, CNA's nurses, etc, to tell us what decisions to make. It is our job as families to decide how far we want to push the envelop, how far we individually and collectively have the capacity to push the envelop. That decision is a complicated one that has to take into account a number of variables.

Subject: RE: BS: Eldercare
From: McGrath of Harlow
Date: 11 Jan 13 - 08:49 PM

I don't feel too happy with terms like 'eldercare'. We all get old, unless we die, and those of us who are already pretty old plan and hope generally to get a good bit older. And we can expect that in various ways we are going to need other people to do some of the things we been used to doing for ourselves. And as at all times of our lives we need to be involved with people who get on with us and put up with us, and we want the people who do stuff for us to be like that.

But I don't feel comfortable with that being given the kind of labels that are more appropriate to looking after young children. "Care" is a word that I feel needs to be used sparingly and carefully in this context. What it's really about is help and respect and friendship.

Subject: RE: BS: Eldercare
From: Lizzie Cornish 1
Date: 11 Jan 13 - 07:22 PM

Chocolate's good, Joe....

And saying "Fuck this!!" quite often, either under your breath, in your head, or very loudly in the middle of a field somewhere...whilst ensuring you've also loaded even MORE chocolate into your backpack before setting out for the field!

Remember that you two young un's still have a right to a life. Yes, you DO! And it's OK to WANT that.

Remember that sometimes, the person you're caring for would actually feel much happier being cared for by someone else, but they just don't know how to tell you, for fear of upsetting you...so each side struggles on for years. That often happens, but people have no idea until something happens and one side or other is simply unable to care/be cared for, and that's when it often all spills out...

And remember that it's OK to cry, be angry, rant, rage and fall over sideways in Exhausted Giggles whilst cleaning the poo off the loo again for the 4th time that day, because you KNOW that really, this isn't truly happening and you are merely inside a Virtual Monty Python Movie...

It's also perfectly OK to sometimes feel you HATE the situation you're in and the person who is causing you all this grief and hard work too. Most folks won't ever tell you that, but most folks don't have to do what you're doing. But, it's OK to feel those emotions. And it's OK because MOST of the time you love them and you feel compassion for them, but the other side of those feelings is also OK.

And if anyone, *ANYONE* ever DARES to criticize you for feeling that way, or for being down, or for just simply not being able to cope any longer, doing their best to make you feel guilty, tell them to fuck off...and then, eat MORE Chocolate, for they truly haven't got a CLUE about this Journey, and chances are they'd never ever contemplate doing it themselves anyway....

Pamper yourselves, Joe..have times of the day/week that are just for the two of you...when you can eat Chocolate under the duvet together, and say "Fuck it!" in perfect harmony, with twinkles in your eyes...

Much love...xxx
Lizzie

Subject: RE: BS: Eldercare
From: GUEST,leeneia
Date: 11 Jan 13 - 11:08 AM

Well, Joe, no matter what the PT says about herself, if you are scared when you get your MIL out of bed, then she's not meeting your needs. It's great that your MIL is improving, but you are entitled to be okay as well.

Frankly, I wonder how she can make that claim when OT and PT are two separate four-year programs. But maybe my info is out-of-date.
============
I'm wondering about something. When you get to an impasse such as the one about the TV-microwave-kettle-brownies, would it help to give your MIL paper and pencil and ask her to draw what she wants? If it would soothe her feelings, claim your ears are plugged up and you need her to draw things for you.

Subject: RE: BS: Eldercare
From: Crowhugger
Date: 11 Jan 13 - 12:27 AM

Ahhh, been there, Joe. Sort of. Not for the long haul that you and others face, because my mother lived only a year from the time she was diagnosed with cancer and had surgery & chemo. But I've had enough experience to say that I would bet the guilt of giving oneself time to recreate is related to that felt by aid workers in famine-stricken areas who have so much to eat while people die of starvation around them. To give effective care I suggest that we need to be more like those aid workers: Eat regularly from the tree of self-care.

My suggestion is to schedule sufficient (whatever that may mean to you & Christina)respite care to give ourselves a break, even if it means more work in the short term by creating a bunch of extra arrangements to make, extra comforting and reassuring and, yes, dealing with push-back from the parent who likes things the way they are, wants to sleep in their own bed and have family always at hand etc.

Like everyone else's situation there were complexities in ours, but the main mistake I made was in not taking enough time for myself until at a certain point I had to take a longer break for my own emotional restoration. Fortunately her health rebounded enough that she could take care of herself during that stretch--or perhaps that rebound is what gave me permission to take a break, I don't know. And fortunately, I was able to restore myself enough to spot a downturn before she did and get myself back to her side for the home stretch. Heaven knows how I managed to do that when, amid other enormous health concerns of my own at the time, I was recovering from PTSD, so I didn't have a lot of emotional oomph to start with when the episode with mom arose. That's no doubt why I am particularly attuned to this aspect of the challenges.

As for guilt about not spending every possible moment with the loved one that you possibly can: I like the saying, "You can have anything you want but not everything you want." You can grab every possible moment even if the quality is crappy, or you can take care of yourself and have much better quality if slightly less quantity of time with them. I think it's preferable to make an informed choice about which approach you'd rather take.

Subject: RE: BS: Eldercare
From: Joe Offer
Date: 10 Jan 13 - 08:11 PM

Leeneia, our physical therapist says that in California she's licensed and trained to do everything an occupational therapist can do - and more. She's forcing my mother-in-law to do things she didn't think she can do, and the improvement is amazing!

-Joe-

Subject: RE: BS: Eldercare
From: wysiwyg
Date: 10 Jan 13 - 07:35 PM

(((Rap)))

Subject: RE: BS: Eldercare
From: gnu
Date: 10 Jan 13 - 05:16 PM

I got nothin except my thoughts and prayers but I wanted to post that anyway.

Take care... (of) all of youse.

Subject: RE: BS: Eldercare
From: Rapparee
Date: 10 Jan 13 - 02:07 PM

We will almost certainly be flying to my MIL's in DC on Saturday. She will almost certainly be gone by then.

Joe, contact the local Agency on Aging or any of the others mentioned. IF YOU CAN AFFORD IT (and Medicare might come into play) you can probably get home aids to help.

Subject: RE: BS: Eldercare
From: GUEST,leeneia
Date: 10 Jan 13 - 12:24 PM

Wysiwyg, Rara Avis and Ann N are offering very good advice, Joe. Forget what I said about slick fabrics. It might lead to a devastating fall.

Joe, you mentioned having physical therapists around, but I don't think they are going to solve your problems. I believe Wysi is right and what you need is an occupational therapist. (You might need just one visit or consultation.) Despite the name, an occupational therapist shows a disabled person how to cope with day-to-day life, not how to keep a job.

Remember phone books? See if you can find one with blue pages in the middle and under "A," agencies on Aging.

Subject: RE: BS: Eldercare
From: Ann N
Date: 10 Jan 13 - 08:34 AM

Hugh Marriott's book " The selfish Pig's guide to caring" is well worth a read, I didn't come across it until after my OH died but it made me laugh (and cry ) because everything the author wrote about his feelings and coping strategies when looking after his sick wife rang a bell with me.

Here's a link to a short video interview with Hugh Marriott describing the book and another to a book review by the Carers Network

Subject: RE: BS: Eldercare
From: Rara Avis
Date: 09 Jan 13 - 08:33 PM

I took care of my father for fourteen years before his Alzheimer's became too much for me to handle. My only help was a paid companion while I was at work. For two I shared care of my husband's aunt with a woman who was financially well off so she paid for most of the aunt's needs. Now my husband is failing. If your M-i-L is entitled to Social Security, contact them to see what benefits she can get from them. It could be someone coming in for a few hours a day, durable goods (and it sounds like a lift would be a big help), respite care, etc. You must be firm and persistent. I learned this from a nurse today as I picked up my husband from hospital. If you town or county has a senior services organization, call them to see what they offer. Volunteers are great until volunteers get too tired to volunteer any more or, worse, get injured. Good luck and try to maintain your sense of humor. Me? I'd run away from home but, as I'm disabled, I probably wouldn't get far before I was caught and returned to the fun-filled life of a caregiver.

And ditto to everything Susan wrote.

Subject: RE: BS: Eldercare
From: wysiwyg
Date: 09 Jan 13 - 02:54 PM

Hoier lifts are great-- I've been in 'em and I've seen VERY fragile people moved around with them-- but it hurts the patient as much to get in and out of one as it does to move without it. Your local equivalent to our Area Agency on Aging can send peeps to teach best transfer techniques, and advise on mechanical helps that they may fund or partially fund.

In our area, a "lending library" of medical equipment such as walkers, wheelchairs, shower benches, hospital beds, etc. is maintained for free community use by one of the larger churches. In another approach, we got a medical-quality electric lift recliner via FreeCycle, that has been a true Godsend since my surgery. I slept in it for 3 months. (Some go as flat as a bed but let the patient get up without twisting their legs over the side.)

The best book I have seen untangling levels of care is under $3 used, at Amazon: Stages of Senior Care: Your Step-by-Step Guide to Making the Best Decisions (Paul Hogan). We used this not only to inform ourselves but to help make communication with medical peeps and other family members less.... personal. ;~)

As a caregiver, keep in mind that today's health system depends upon wearing out the caregiver (and the caregiver's resources) before they will help. This means that a professional can and should certify what respite help you need. Somewhere in the fine print, it says that they cannot REQUIRE family to do a damn thing. What they can and DO do is just delay services till they see what the family will pony up out of love and desperation.

A physician's prescription for an Occupational Therapy Home Evaluation, however, can cut thru a LOT of BS and red tape. And these little documents can make the case for non-Medicare-funded things that you may be able to get, thru other helping agencies (or FreeCycle).

The whole system is predicated on the reality that no adult child or spouse will ever feel like they have done "enough." That means that the only curb on your own burnout is YOU. YOU (i.e. any caregiver) need to plan for others to help, support, take over, etc., and you may need to adjust some personal values to allow for this so that you CAN be there for her, for the long haul.

Keep an eye out for the friendly LPNs and RNs. They will be your best allies in the insanity of the system.

~Susan

Subject: RE: BS: Eldercare
From: GUEST,leeneia
Date: 09 Jan 13 - 12:23 PM

Hi, Joe. You wrote "The thing that scares me most is moving my mother-in-law from her bed to a wheelchair or commode, and then to a chair or sofa."

When my sister was recovering from a hip replacement, she would try to get out of bed and suffer pain because she hung up on the folds in the bedding. We are fabric-savvy, so she found a very slick, shiny half-slip to put on so she could slide more easily over the bedding.

When a friend had the same operation, I made her a robe out of the slickest fabric I could find. She loved it.

So for your M-I-L, how about an experiment? Put a satin sheet on her bed so she will slide out more easily, or get her some slicker, shiner clothes. Just don't overdo it, or she might slip out and fall.

Subject: RE: BS: Eldercare
From: GUEST,Eliza
Date: 09 Jan 13 - 12:05 PM

I'm wondering if you can get a special hoist which safely lifts and transfers the patient onto a chair, commode or the bed? Here in UK you can get one brought to your house, on loan from various organisations (eg Red Cross). It's a bit bulky but helps tremendously to lift safely without injury to the carers or the patient. I do admire people who continue to tend their aged parents in this way, it can't be easy.

Subject: RE: BS: Eldercare
From: Bat Goddess
Date: 09 Jan 13 - 09:36 AM

It's not just elderly parents or inlaws -- in my case it's my husband, Curmudgeon.

I "retired" (whatever THAT'S supposed to mean) in June to become his full time caregiver.

At the time, he was confined to a wheelchair and still could not put any weight on his ankle, which he broke last March, and actually had only been home for a few weeks after spending March to May in either the hospital or rehab facility. (And the change from cast to boot brace placed even more demands on me.)

Thanks to therapists from Visiting Nurses, he relearned how to walk and is now quite mobile.

But...he can't see and he doesn't have a voice with any volume at all. I'm constantly "on" listening -- and interpreting -- every noise that eminates from the room he's in. He can't yell for help if he gets into trouble. He can't see well enough to easily handle his email or any of the paperwork for any assistance we apply for. He can no longer cook without assistance (and he's done almost all the food prep, shopping, meal planning, etc. for the past 35 years). It's more work for me when he "cooks"(and I assist doing the things he can no longer do), but he NEEDS to do the things he enjoys and can still manage even partially. Getting Tom into The Press Room for sessions is not half as complicated as getting him safely OUT of the pub. First of all, I feel like a pack mule carrying all his gear, then maneuvering him safely through a crowd so he doesn't trip over people, chairs or floor mats, then down a step outside the complicated door arrangement when he has no depth perception. Works best if I have someone helping me help Tom who can also, when I bring the car around, help him off the curb -- that's the most dangerous part because of his lack of depth perception and general shakiness of his legs.

We're still working out the logistics of us tackling writing projects together -- we've always written well together because he has the debating background which enables him to organize a piece well, but he has a tendency towards verbosity and the passive voice. So I take his first draft and edit dramatically and punch it up.

More and more (mostly women) people (some local and some at quite a distance) I know are having to be more or less full time caregivers for their husbands, sometimes juggling a job outside the house as well. It REALLY helps me to compare notes with them and share coping strategies.

I don't feel I can work a part time job outside of the house, away from Tom, but I need to scare up a couple hundred dollars or more a month to supplement our social security. I'd love to find some freelance proofreading or editing jobs, but mostly I sell stuff (books, ephemera, antiques, interesting and/or vintage jewelry, etc.). That leads to another level of stress (and guilt for not getting set up with eBay, Amazon, etc. as I intend to because I'm too busy scrambling and selling through other outlets).

I need time for myself (I CAN escape for a couple hours to spend with friends...but I worry), and when I AM home (most of the time) Tom gets jealous of time I spend working on my massive archival project (which is basically working on his legacy) and then says I don't spend enough time WITH him. He can't escape from the house and from me at the same time, so he DOES feel trapped sometimes. A friend at The Press Room, coping with a husband moving with a lot more difficulty than he used to, asked me if I feel trapped. I don't feel trapped, but I think I need to see her or talk to her more often because I think SHE does.

Joe, being a caregiver IS very demanding. And it's very complicated, not just in the actual DOING of things for and with the person we're caring for, but in the guilt and other feelings in ourselves we have to analyze and deal with (and watching for depression or frustration in the person we're caring for so we can help them -- and ourselves -- deal with that).

And then, just below the surface, there's the constant fear of the next medical "event"...

Sorry I've blathered on at such length. I'm still coming to grips with it all myself. And I'm very very lucky that Tom is still as active as he can be despite his disabilities and VERY active mentally and can still manage a lot of what needs to be done.

Joe, I'm glad you started this thread. We caregivers DO need to network with each other and where better than in the Mudcat community?

Linn

Subject: RE: BS: Eldercare
From: Rapparee
Date: 08 Jan 13 - 10:58 PM

Are there local resources you can call upon? In many communities churches, etc. provide "respite care" for caregivers, or can simply help out from time to time.

I suggest the book "Gone From My Sight."

Subject: RE: BS: Eldercare
From: Janie
Date: 08 Jan 13 - 10:51 PM

Joe, I don't have a huge amount of direct experience, and my family circumstances were different and somewhat shorter term, so this is fwiw. Caring for someone who is frail is tough, and inevitably the burden is going to fall heavier on some family members than on others.

Those transfers are terrifying, aren't they?!

As I already said, my family circumstances were different. I also am not a good nurse. I am too afraid of doing more harm than good to be very good at "hands-on" care, although that hands on care may have been easier in some ways if Dad had been demented rather than delirious. Even the home health aides and CNA's that came in to help during his last month of life were challenged to safely move and transfer him.

I think it inevitable that the vast burden of care falls on Christina. In spite of the presence of my sister, my nephew and me, and in the last 6 weeks of his life, 24 hour help from a combination of home health aides and CNA's, the brunt fell on my mother. No so much for the physical care, but for the emotional care, the interpretation, the effects of her simple reassuring presence. Essentially, it was her cross to bear. We could support her according to our talents and willingness, but could not take the burden from her.

Seems to me your most important job and the way you can be most effective is to support Christina in every way that you can. Only Christina can say what that support looks like, and only she can tell you if the nature of the support she needs changes day-to-day or moment to moment, depending on circumstances. She may want you out of her hair one day, or she may want you right there to run errands or watch her mom while she takes a break on another.

I'm certain there are many here who have experienced family circumstances closer to what you are experiencing than have I. This has taken me long enough to type that a bet a few of them have already posted!

Your family are in my thoughts and meditations.

Holding all of you in my thoughts and meditations.

Subject: RE: BS: Eldercare
From: Beer
Date: 08 Jan 13 - 09:54 PM

Guilt is a powerful hindrance. Don't let it consume you which I'm sure you won't. And I say this because of your past up bringing and your experience it brought you. I'm guessing on this last line but I think I'm probably close in being right. i know this through your posts and your view on human beings.
I have went through guilt most of my life not being around Mum when I know she could have used my help. But it is difficult when you are starting a new life with a wife family and home. I live a day's drive from home and still get there twice a year. Mum passed away 2007 and i still miss her. All you can do is do your best and you are in a lot of way in that you are there to help.
All the best Joe.
Adrien

Subject: RE: BS: Eldercare
From: Bobert
Date: 08 Jan 13 - 09:35 PM

Bad news, Joe...

You may have to do a little less music and volunteer work...

B~

Subject: RE: BS: Eldercare
From: Elmore
Date: 08 Jan 13 - 09:23 PM

Joe:

Joe: I wish I had some tips for you, but all I have is sympathy. My mother lived with my wonderful wife and me for her final years. She was in her eighties, and had heart and hip problems. We did the best we could, and have no regrets. My heart goes out to you and your wife. Sincerely, Elmore.

Subject: BS: Eldercare
From: Joe Offer
Date: 08 Jan 13 - 08:43 PM

I suppose a number of us have an occupation that takes up much of our time: eldercare. My mother-in-law will be 98 this month, and lately it has become quite a burden to take care of her. My wife is a chiropractor, and she's able to give her mother a level of care that wouldn't be available in a nursing home, so I'm glad we're doing it.

It does have some drawbacks, however. The thing that scares me most is moving my mother-in-law from her bed to a wheelchair or commode, and then to a chair or sofa. She injured her back at Christmas, and not she's not able to help us move her. We tried a belt around her waist to help in lifting, but it hurts her. We have a physical therapist coming a couple of days a week - I'm hoping the PT can help us figure out a way to move my mother-in-law safely.

This afternoon, my wife Christina was out walking the dog and my mother-in-law was trying to say something about a kettle next to the television. I brought her several kettles to see if that's what she meant, but we couldn't figure it out. When my wife came home, she said her mom confuses the kettle with the microwave, which looks like a television to her; and what she wanted were the brownies that we keep on top of the microwave. So, Christina brought her a brownie, and she was happy.

I'm gone a lot of the time, doing music and volunteer work and whatnot. That leaves the burden of care to Christina, which makes me feel guilty at times. Even when I'm home, it feels like there's not much I can do. We have caregivers come in two or three days a week to give Christina a break, but it's tough - especially for her.

So, that's our life. How's it with you other caregivers? Any tips to share?

-Joe-