Gaia: Loving Carers - Introductions

Re: Here We Go Again

http://peacehealer.gaia.com — Wed, 18 Feb 2009 15:33:13 GMT

Hi, Zephyr - you're welcome. Remembering to notify everyone can be hard - and finding the right wording is challenging, too.

peace and blessings -

Sylvia

Re: Here We Go Again

http://addresstofollow.gaia.com — Wed, 18 Feb 2009 13:59:23 GMT

Sylvia, thank you for kindly letting uS know, I have sent Deb a personal message, she is in my thoughts too.

Re: Here We Go Again

http://peacehealer.gaia.com — Wed, 18 Feb 2009 06:07:50 GMT

Hi, folks - Deb's MIL Jeanie died on Sunday. Deb posted a beautiful eulogy to her in the Passing Pod.

To celebrate Jeanie's life - and her relationship with Deb:

And Deb - I know that eating can be spotty and sometimes unappealing in the fresh throes of grief - so I would like to offer some tempting fruit:

prayers flowing -

Sylvia

Re: Here We Go Again

http://yhd52754.gaia.com — Mon, 16 Feb 2009 01:12:32 GMT

I can think of no more comforting thought than the image you provide. I can think of no better way to let go of this physical life, given what she has been through.

Thank you for this . . .

Deb

Re: Care Package

http://addresstofollow.gaia.com — Sun, 15 Feb 2009 16:56:46 GMT

Sylvia thank you for sharing that beautiful link.and a big welcome.

Re: Here We Go Again

http://addresstofollow.gaia.com — Sun, 15 Feb 2009 16:53:21 GMT

So glad they are focusing on her comfort, that is the important thing, with poor urinary output chances are she will drift into a peaceful deep sleep content in her own surroundings, thinking of you all and sending love.

Re: Here We Go Again

http://yhd52754.gaia.com — Sun, 15 Feb 2009 16:29:33 GMT

Thank you Gael.

We've accomplished a big step. We had to rush her to the ER a week ago. Her sodium levels were 118 (130s are normal) and she was not outputting urine at an adequate rate. She improved for 2 or 3 days, plateaued for 2 days perhaps and then began to worsen there.

She never wanted to end like that in an institution with tubes everywhere. She had made that plainly clear to us over and over. Once in an institution, getting her back out proved an ordeal. Thankfully, she chose her power of attorney well in the unswerving clarity of my husband regarding her wishes. My BIL arrived Friday morning and it is hard for him to give up any tiny hope of recovery and he would pursue much that is invasive or intrusive, if hope were extended by the medical staff.

We were able to become hospice clients yesterday (Sat, almost one week after she had entered the hospital). We were able to get her home. It required a 40 min ride by ambulance. Her agitation at being in the hospital and active resistance to the various tubes there has ceased entirely.

She looked around her familiar surrounding almost in a state of awe, as though she did not expect to see them again. The IV is gone but the oxygen and catheter remain. Now, she seems not to mind. Though it was difficult for her to speak clearly enough last night for us to understand, she managed to get out plainly "I am glad to be home". That made it all worth it. What a loving Valentine's Day gift my husband gave her.

Now, she need not wait on drs orders or her turn from the nurses when in pain. Now the whole focus shifts to her comfort. We are told not to expect more than 3 days to a week. Time will tell. Thanks for being there.

Deb

Re: Here We Go Again

http://addresstofollow.gaia.com — Sat, 14 Feb 2009 23:20:38 GMT

Debs, with you in spirit, be reassured you are doing your best for your MIL.
Are there McMillan or terminal care nurses over there, they could be a support, to you both and maybe give some night cover ? Thrush can affect the mouth too so check that for white spots. the sleepiness is worse when first on the meds, and should ease as the pain balances it. How is your other half coping?
If you have a moment read the lovely post above yours. Much love and a big hug
and get a bit of rest if you can, this is a bit of a marathon with what has gone before and you have had it tough lately. You will all be in my prayers. Message me if you need to let off steam, be gentle on yourself
love from Gael

Care Package

http://peacehealer.gaia.com — Fri, 13 Feb 2009 21:46:07 GMT

Hi, folks - I resonate a lot with the focus of this pod. I was primary caregiver for my mother as she dealt with terminal lung/brain cancer from May of 1998 to February of 2000. I have read various mentions of folks on Gaia who are caregivers - which led me to write this post in the Care Packages pod for people who are caring for someone in the process of physical transition. Just click on the highlighted words "this post" to get to the other pod.

Thank you for what you're doing - blessings on your journeys -

Sylvia

Here We Go Again

http://yhd52754.gaia.com — Sat, 07 Feb 2009 18:11:20 GMT

I've not been as active as I might wish here and I see this group has not been too active but here I am again, where I was when this group first started. My FIL died Nov 2007. My MIL has done well until the last week or so and the decline has been alarming. I'm not sure who will read this but I'm glad for the place to write it.

We have been first coping with debiliatating pain. The damned if you do and damned if you don't world of narcotic pain relievers. I did ask about the Tens machine to no avail. Dr wanted hospital, MIL wanted otherwise and so here we are on 10 mg Oxycotin twice a day and 5/325 Percocets as needed (3-5 times daily and which we will try to cut back). She can't stay awake at the moment or assist due to the degree of pain meds.

She has Stage 4 Multiple Myeloma and we now know its everywhere and has spread significantly in the area of the most pain. We consult with a radiation dr next week. Twice before this has provided prolonged (4-6 mos) pain relief with no need for narcotics (just some Tylenol here and there).

There is a hellacious yeast infection in her genital area of which I only became aware on Thurs night. Went into diaper rash treatment mode and called the dr Fri morning. By Fri afternoon, the nurse in his office drew off 1100 ml of urine. We are not getting much urine output now but some is going in uncollectible places at the moment. If it seems dire, we will be in ER for draining by Sun morning. She's on oral meds and ointment for this and the yeast infection seems already to be responding. We have done 2 grueling shower sitz baths last night and this morning but it's worth it.

She's unable to use the phone and will call for me, during the night, though I'm not there and wonder why I don't come. She's minimally, in the strictest sense of the word, communicable. Our goals for the day - more time awake, less pain meds, more food, more movement. Her strength is declining at a rapid rate.

She is seeing things or hallucinating, whichever definition works for you. She's seeing "people" who aren't there - vaguely. As a spiritual person, to me this is not good news for her prognosis but I search my heart, are we at that point where she goes not to return? I don't feel it yet, and that is not over-optimism on my part but hope only. We are definitely at a serious point, a crisis point, a balance point - where it can go either way and I've not a clear feeling for which way we're tilting - perhaps towards the no return, at the moment. Our will for her to live is the bolster, though she has not lost hers, it is not actively engaged either.

More later - I'm sure.

Deborah

Re: Admiration & thanks for carers

http://MikeyDineen.gaia.com — Tue, 04 Nov 2008 22:38:33 GMT

Zephyr, Gael, I'm better and better thanks and if you mean my trip to Lourds, it was amazing and wonderful- I was here with my mother and we had a lovely time together, thanks,
Mike

Re: Hello

http://miarose.gaia.com — Tue, 14 Oct 2008 22:12:40 GMT

My mum cared for my dad for 15yrs.
He had osteoporosis of the spine and dementia, and in the later years, heart and kidney failure along with many, many chest infections.
Mum had 2 x 2hrs respite a week and I would take over from the Monday carer so Mum could return when she was ready.
Dad died in February this year aged 78 at home with mum beside him.
I loved my dad.

Re: Hello

http://addresstofollow.gaia.com — Tue, 14 Oct 2008 21:55:19 GMT

Hi Mia, Welcome, what a useful job you do, and with enthusiasm and love too. I like how you imagine yourself in the clients position. I get a 3 hour break once a week from caring for my mother aged 90, so I know how much the break is appreciated. Hugs. love from Zephyr

Hello

http://miarose.gaia.com — Tue, 14 Oct 2008 21:35:38 GMT

Hello, I work as a carer/support worker and debbyem introduced me to this group.
I think my job is one of the best in the world, I get so much satisfaction from it.
I help the elderly and/or disabled to live in their own homes and support their carer (if they have one) by sitting with them whilst they have free time.
I also take some people out either in my car or in their chair.
Who else can say they have been to work, when they have been walking along the sea front or sitting in the warm drinking coffee, watching tv and chatting.
I love my work and my clients :)
Yes, I get moaned at, sworn at and threatened now and then.
It could be me doing the moaning, swearing, threatening one day though.
It could be me needing a hoist to get out of bed with.
It could be me having my bottom washed and a pad put in place.
It could be me needing to be fed and helped to drink.
So, I do my work with love and care for those I work with.
mia

Re: Admiration & thanks for carers

http://addresstofollow.gaia.com — Sun, 28 Sep 2008 14:35:37 GMT

LOL, have learned not to take it personally, I realise her abilities are not what they were, smiles.
How was your trip and how are you now Mikey?

Re: Admiration & thanks for carers

http://MikeyDineen.gaia.com — Sat, 27 Sep 2008 09:10:48 GMT

Zeph, I hope you didn't get POff, when your mother told you to POff. But this said it probably better to get Pdoff than Pdon ? No?

Re: Admiration & thanks for carers

http://addresstofollow.gaia.com — Thu, 04 Sep 2008 00:35:55 GMT

Smiling, my mother told me to piss off when I woke her for her meds the other evening, she was fine again the next morning.!!!! Mikey thank you for writing this those needing care sometimes do things they would not otherwise if they were well, and it is not their fault.
I have been desperately ill too, experiened an NDE, been a professional nurse, and a home carer, have seen life from all perspectives.. I hope your recovery continues Mikey, remember the power of the mind, I have seen it work miracles.

Admiration & thanks for carers

http://MikeyDineen.gaia.com — Wed, 03 Sep 2008 02:20:41 GMT

Friends, caregivers, wonderous folk, I joined this group because I am one of the fortunate/unfortunate benefecaries of quite a lot of care. I am on the slow road to recovery from a bout of deadly illness, which almost cost me my life & sanity, but I'm still here. I spent over one & a half years in various hospitals around & about Paris, France and I wish to express my admiration & gratitude for the non-professional care-givers who saw me through thick & thin, in various comatose & semicomatose states. And I wish to raise one prickly point, which I would like to discuss here with you, i.e. please feel free to comment. My prickely point is this: As an ill person I often got very frustrated and I wrongly lashed out at those who were helping me most, and I hope I didn't hurt them. This is Something, I feel was inevitable, if unfair, for I was working from a very helpless & dependant position. And if my dearest friends & family couldn't forgive me for this, who could? They were surely the least deserving but the most understanding, of my badly aimed and controled frustration. If you, as a care giver have had any experience of this, I would like to hear about it. Thank you.
Mike.
I am not going to wrant & wrave & gnash my teeth here, but if you are interested, visit my blog where there is a more complete account of my unfortunate experience, with a minimum of wranting, wraving and gnashing of teeth. Just enough to make it interesting I hope.
Thank you Caregivers on behalf of all the carereceivers like me, we appreciate your love, care & attention, & ask you to tolerate our ocassional lapses into W & W & Gnashing of teeth.

Re: New to respite care...tips?

http://Snowmoon1214.gaia.com — Sun, 10 Aug 2008 22:04:52 GMT

Hi Emily... first, please tell me how old the children are that you are working with?

*SnowMoon

Re: New to respite care...tips?

http://addresstofollow.gaia.com — Sat, 09 Aug 2008 16:29:11 GMT

Emily, what a lovely thing to do, I feel sure they will really appreciate the respite and break from caring Pulling a funny face and laughter often works to defuse a situation with children, hard to stay cross when someone is being amusing. Distraction is another way if you see a developing situation distract attention elsewhere. Staying very calm yourself helps infuse a calming atmosphere. If a child is really wound up a quiet corner somewhere away from the others till they calm down. Ignore unwanted behaviour and reward periods of good behaviour with stars, positive praise or small rewards, or doing things they enjoy, better to encourage the behaviours you want, than to escalate by being hard on bad behaviour. Finally listen to the child let them express themselves and feel safe, bottled emotions can result in outbursts. Hope some of this is helpful, and good luck with the caring.