BS: Caring for Grandma

Subject: BS: Caring for Grandma
From: Joe Offer
Date: 14 Apr 13 - 02:11 AM

My wonderful Polish mother-in-law lives with us, and it has been a delight to have her in the household for the 11 years I have been married to her daughter. But now, Grandma is 98, and she's not doing so well. Up until about a year and a half ago, her quality of life was good, and she was generally quite happy (despite the fact that she listened to those horrible talk shows on the radio, and they got her so worried).
But being 98 is tough. Grandma doesn't get enough oxygen in her blood, and it makes her confused and scared. It used to be that we could take her in for a transfusion when she got like this, but the transfusions don't work any more. So, she's in distress much of the time now. I suppose she'll get to the point where she goes into a coma due to lack of oxygen, and then she'll pass on - but for now, she keeps going, and she's in distress. I go into her room and chat with her and sing her a song, and that helps for a while - but then she's distressed again.
I suspect she stays awake much of the night, with no one to comfort her. She does have our two shih tzu dogs sleeping with her, and that does help.

But I wonder - are there other things we can do for this poor, dear woman to make her more comfortable and to give more richness to her life? Many people have suggested hospice, but she's really quite healthy still and not really ready for hospice. Still, we need to do what we can to make sure she has a good life now. I've tried reading to her, but she doesn't seem to follow what I read to her. She does like my singing, and she loves the dogs. Any other ideas? She's lived so long and done so many wonderful things and raised such a wonderful daughter. What can we do do make her last years, good years?

-Joe=

Subject: RE: BS: Caring for Grandma
From: mg
Date: 14 Apr 13 - 02:34 AM

would more oxygen help? Be sure you and your wife have time off alone and together and that respite care, perhaps in a nursing home, is available. Oh..I was just reading something about nitrous oxide being helpful in some situations and some common product helps provide it..what was it?

Subject: RE: BS: Caring for Grandma
From: mg
Date: 14 Apr 13 - 02:44 AM

i think it is nitric oxide used in newborns

http://inomax.com/about-inomax/parents-and-caregivers/

Subject: RE: BS: Caring for Grandma
From: Joe Offer
Date: 14 Apr 13 - 04:11 AM

I gotta say, I felt really good when I had nitric oxide when I had my wisdom teeth out. There is a temptation to use pharmacology, but is that really the answer? What is the best way for a person to travel to death in a meaningful way? I can't believe that it's best for my mother-in-law to go through all this suffering, but neither can I believe it's best for her to be drugged until she dies. Clear thinking is very important to her, and I can't blame her for feeling that way.

-Joe-

P.S. I gotta say - we had a song circle at our house today, something we do about once a year. My mother-in-law loved it.

Subject: RE: BS: Caring for Grandma
From: billybob
Date: 14 Apr 13 - 04:18 AM

Dear Joe,

my mum, 89 with dementia, lives with us. I have music from the 30's and 40,s playing during the day and at night if she is confused. Lots of old family photos every where in her room and I am making a memory book so tha visiters and carers( we have private care so I can still go out to work, mum cannot be left on her own)can know all about her and remind her of her happy life.

If we have respite care we have someone come and stay here as mum would be too confused and distressed to go to a nursing home for even just a few days stay.

I do agree, you and your wife MUST look after yourselves and have some time for yourselves, Billy and I have had three weekends away in the past two years. Now he has just found out his Chemo treatment has put him into remission I am determinded to have weekends away this year, but it is difficalt to have the confidence to leave mum with someone else!

I am sure your mother in law feels safe and loved, even when confused , she knows you are caring for her and she is in the place she knows is home. Keep singing and be kind to yourself!!

With love and thinking of you

Wendy

Subject: RE: BS: Caring for Grandma
From: Megan L
Date: 14 Apr 13 - 04:58 AM

When mum was dying after her stroke, the elderly lady a few beds down was drifting in and out of consciousness yet it was plain for all to see that even when unconscious something was upsetting her.

I spent many years teaching first aid so felt I had to talk to her daughters one day when i heard them discussing how poorly she was at her bedside, they hadn't understood that she could hear what they were saying. (a fact later confirmed when she awoke and asked them how a certain grandson was getting on since his accident, which had happened after she had been brought in to hospital.)

We got talking about their mums past it turned out she was at every service at the local chapel every day. I looked at their mother and asked where her rosary was to be told it was at home since she was unconscious and didn't need it. It made me wonder and I asked them to bring it in.

Next day they arrived with the rosary and draped it over her fingers. Suddenly their apparently unconscious mother's fingers twitched and her lips silently moved a passing nurse looked at her monitor then came closer to check again all her vital signs had calmed down.

I saw the same thing with Aunt Celeste when she was at home her bible was on a table by her chair and though she could no longer go to church she read it every time she sat down. When she ended up in hospital her sight was to bad and her health to frail for her to read. By the time we managed to get of the island and travel down to her she was very fractious though no longer fully conscious. I asked the nurses if there was a Gideons bible in the ward and spent a lot of time over the next few days just opening it at random and reading to her. One of my brothers had taken her cat to look after so my oldest brother searched the town and found a soft toy cat, which looked realistic, he placed it under her hands and she began stroking it. Once again people were amazed at how she calmed and finally slipped easily away.

I guess what I am long windedly trying to say is do not underestimate the comfort to be found in the familiar. Also do not be afraid to try what some might call the silly e.g. a teddy bear or a doll. Bear in mind how children use them as someone to talk to when frightened or even just needing to sort out something in their lives. To a child the doll or soft toy offers unconditional love and an unending and unjudgemental ear.

Keep singing and playing for her she is a captive audience (Grin) seriously though it obviously brings peace.

Thinking of you all
Awra best
Frae
Meg

Subject: RE: BS: Caring for Grandma
From: Sandra in Sydney
Date: 14 Apr 13 - 04:59 AM

I've had no experience looking after anyone, so I can't help you directly, but as she loves being amongst singers, maybe you can have more regular (small) song circles.

Does she like music/songs playing in the background like Wendy's mum?

sandra

Subject: RE: BS: Caring for Grandma
From: JohnInKansas
Date: 14 Apr 13 - 05:26 AM

Nitric Oxide (or nitrous) is an anesthetic intended to dull consciousness or put someone to sleep. It is, I believe, sometimes used with infants due to dangers specific to newborns if pure oxygen is given to them. Excessive concentrations of O2 can cause blindness and other harm in very young newborns, and especially in "preemies."

If the problem is "insufficient oxygen" supplemental pure oxygen is often prescribed for other than infants. (This treatment is often used for people with emphysema and/or other lung deterioration.)

Oxygen bottles of compressed O2 and/or liquid oxygen (LOX) are still used, but of course require delivery of fresh cans at regular increments. The LOX supplies also generally require "conditioners" to warm the flow and can range from simple to "gottabeanengineer" to maintain them.

The more common supplement now uses an "oxygen concentrator" that blows air through an absorbent that removes the nitrogen and provides an output flow of very pure oxygen. The flow is reversed, and when air is blown back through at a different pressure the nitrogen is removed from the absorbent so that it can be recycled to repeat. A pair of absorbent cans run in alternation, with one making oxygen while the other is being replenished, so that the oxygen output is continuous.

With a prescripton, Medicare normally will pay for nearly all the cost of renting one of these, although there may be a "deductible" on this particular equipment since a "rental" is treated a little differently than a purchase. Other insurers may vary - a lot. Usually a single physician's order suffices indefinitely, since the device is most often considered to be for a "permanent ailment."

Portable O2 concentrators are available, but the weight of the required battery might make one difficult for an elderly patient to carry, and of course they require recharging and maintenance of batteries. The line powered units do produce some noise, but most people don't have difficulty sleeping with one once they've become accustomed, but I don't have direct observations for a portable.

The oxygen usually is directed into the nose with a light "nasal canula" that pokes a little nozzle barely into each nostril. Most people tolerate the plumbing easily although some (elders especially) are "annoyed" with the device and may need watching to make sure it stays in place.

"Low Oxygen" can also be caused by low hemoglobin (anemia) and that's fairly common in the elderly. The anemia can sometimes be controlled with a modified diet and/or with "iron supplements" but many elderly don't tolerate the iron pills well and maintaining ideal diets can be a separate (and difficult) problem. The prior use of transfusions suggests (to me, a non-expert) that in this case the PsO2 problem may be anemia-related rather than diminished lung oxygenation capacity, although one can be affected by both at the same time.

My experience is that true "low oxygen" can only be determined by a fairly complex serological (blood) test that most (of my) doctors seem reluctant to prescribe. Diagnosis usually is based on "symptoms" which usually is accurate enough but can mislead (whether rarely as they say, or fairly often, I don't know).

Assuming she has a regular physician, it might be worth asking:

"Would supplemental oxygen be helpful for her?"

and

"Is she anemic and can we do anything about it?"

You might not get a direct answer on either, but might still get some clues to things you might try.

John

Subject: RE: BS: Caring for Grandma
From: gnu
Date: 14 Apr 13 - 05:28 AM

Wonderful thread, Joe. Great advice. Megan, that brought tears to my eyes. Thank you. Even tho many might know intuitively what you, not long windedly but, eloquently said with demonstrative examples, citing those examples reinforces the need to try anything that has the inkling of a chance to work, no matter how "silly" it might seem.

As for talking about someone within earshot, I witnessed this at my uncle's deathbed last fall the last three times I visited and I was upset by it but couldn't say anything about it. I chose to try to change the conversation with a story about the time he and I were fishin or huntin or visitin so-and-so. Even told some of the stories he told me... got some smiles and nods from him and he opened his eyes and looked at me a few times.

Subject: RE: BS: Caring for Grandma
From: nutty
Date: 14 Apr 13 - 05:31 AM

I would also go down the song/music route.

A music plater on continuous play could keep her company through the night.
It maybe that she takes comfort in hearing familiar voices so you and the family could tape songs and stories for her to listen to.
If she's like my mum (she lived to 96) she won't mind the repetition as she won't remember that she has heard it all before.

Subject: RE: BS: Caring for Grandma
From: Mo the caller
Date: 14 Apr 13 - 06:05 AM

When I was staying at my mother-in-laws I used the 'away from home and all the things I had to do' time to go through her old photo albums with her and make sure that I had made notes on who they all were.
She enjoyed talking about the past - she could hardly get out of her chair so it was that or watching Sesame street (which amused her), or listening to music from the past (most of the night).
And now she is not here to ask I know who the pictures are. With my parents albums it is guess work.

I also second the need for time to care for yourself. It may seem unfeeling to enjoy yourself when someone close is suffering, but getting depressed yourself will not help her.

Subject: RE: BS: Caring for Grandma
From: Wolfhound person
Date: 14 Apr 13 - 06:06 AM

Is there someone who could come in occasionally and talk to her in Polish if she's still familiar with it?
Now there's a Polish community in UK, there are UK residents of Polish extraction familiar with the language who act as translators for newcomers, but I don't know about "over there".

If lack of oxygen is the issue, can you have a cylinder at home which she can augment her breathing with?

My mother had teddy bears to hug after her Lhasa Apso had to come and live with us - it was the warm contact she wanted, I'm sure.

Good luck, and like everyone else said, take care of yourselves as well.

Paws

Subject: RE: BS: Caring for Grandma
From: wysiwyg
Date: 14 Apr 13 - 08:17 PM

Joe, what does SHE say would help? What has she said in the past? Is there anything that makes it hard to follow her wishes, or ask her what they might be?

~S~

Subject: RE: BS: Caring for Grandma
From: ChanteyLass
Date: 14 Apr 13 - 10:21 PM

I have no experience with this particular condition, but I am glad that you are trying to find a way to help this lady.

When my uncle was in a nursing home, he loved to tell people about his past, so I would often ask him to tell me a story again--and again, and again. His roommate loved to tell about the small business he had run, so I would often ask him about that. One lady who had dementia perked up whenever there was a music performance. She would sing along and move her hands to the rhythm. Her daughter told me that she used to love dancing, but now she was in a wheelchair. Another lady with dementia and also in a wheelchair never went anywhere outside her own room without her purse on her lap. I noticed that one visitor gave her mother a manicure about twice a week. As I got to know them, I found out that the mother had been a beautician who had her own salon which the daughter now owned. It is amazing what gives comfort to different people. I hope you find the things that help your mother-in-law.

Subject: RE: BS: Caring for Grandma
From: Joe Offer
Date: 15 Apr 13 - 03:44 AM

So, now she says she thinks she's going to die tonight. I don't think so - she seems very strong, but she's very afraid of dying. Christina finally got up and came down to comfort her, and nobody can comfort a troubled soul like my wife Christina can.
Gee, this is tough.
-Joe-

Subject: RE: BS: Caring for Grandma
From: Charmion
Date: 15 Apr 13 - 10:38 AM

Over the last two or three years of my grandmother's life, it became harder and harder to visit her because at some point on every occasion she would inform me that she wanted to die. She was too frail to sit up to play the piano, too blind to read music and too deaf to hear the instrument even if she could get her hands on the keyboard, and by that point she literally had nothing else to live for -- even conversation did not mean so much to her. When she finally slipped the surly bonds of earth at 98 years old, I am certain sure that it was a happy release.

When she was younger, in her seventies and eighties, my father (who predeceased her) used to say that she had no intention of planning for illness or disability because she intended to just wake up dead one day.

I believe she was so unhappy at the end of life out of sheer indignant rage that dying took so damned long.

Subject: RE: BS: Caring for Grandma
From: GUEST,leeneia
Date: 15 Apr 13 - 11:54 AM

So, what about the oxygen tank John mentioned?

Subject: RE: BS: Caring for Grandma
From: GUEST,gillymor
Date: 15 Apr 13 - 01:45 PM

My father is 96 and lives with me and my girlfriend and is in relatively good health for his age. He does have trouble sleeping most nights and on the bad ones I gently swab him with a soft, damp washcloth and that relaxes him and sometimes gets him to sleep. He does respond well to his morning bed bath so I guess physical human contact is very important for him.
In his prime he was an intelligent, capable man with many interests who could suceed at nearly everything he put his hand to. It helps me to remember that when I grow impatient with him now.

Joe, I'll echo the oft-repeated notion here that it's so important to take care of yourself for your own sake and hers.

Thanks to everyone for their contributions to this thread.

Subject: RE: BS: Caring for Grandma
From: GUEST,Grishka
Date: 16 Apr 13 - 09:38 AM

Depending on her mental state, she may like to talk about her past. Unfortunately people normally only volunteer those stories where they shine as heroes, or other exceptional events. If we actively ask them about everyday life, political ideas, feelings towards other ethnic groups and about the wars, etc., we can learn a lot, and ideally both sides will benefit. Life in Polish-speaking areas in the first half of 20th century was not only full of violence and hardship, but also as "exotic" from the US point of view as, say, Indonesia. Learning more about it can help you understand your wife and the state of the world alike (- some find the latter easier to understand ...).

Just an idea, fueled from my own experience particularly with my grandmothers. A lot more questions only came into my mind when they and my parents had passed away.

Subject: RE: BS: Caring for Grandma
From: katlaughing
Date: 16 Apr 13 - 10:59 AM

I have about 13 yrs experience using sup.O2 as JohminKS has described. I've also got some direct experience and non-direct with a friend whose mother just turned 103 with no end in site. she is so mean. I'll come back to relate as I have an appt. now.

Subject: RE: BS: Caring for Grandma
From: wysiwyg
Date: 16 Apr 13 - 07:51 PM

Audio:
http://librivox.org/polish-fairy-tales-by-a-j-glinski/

Text:
http://www.gutenberg.org/ebooks/36668

~S~

Subject: RE: BS: Caring for Grandma
From: Joe Offer
Date: 16 Apr 13 - 08:25 PM

Funny thing - my mother-in-law was born in Rhode Island, and her parents were both born in Poland. Her mother-in-law (Babcia) owned the fourplex where branches of the family lived, and Babcia required everyone to speak Polish - so my wife's first language was Polish, too.

But my mother-in-law once told me, "I'm American, and I don't really like all this Polish stuff. My daughter (my wife) speaks Polish better than I do." But she does like to sing Polish carols with my wife and Christmas, while they're making Borsht and preparing the pickled herring and the opłatek (Christmas wafers that look like communion bread).

She's miserable now, but she doesn't want to die. I'll ask about the oxygen, but I would think that's already been considered. It would certainly seem to be less invasive than blood transfusions, but I think the problem is that her blood just isn't able to absorb oxygen. My wife is the chiropractor in the family and understands these things very well. My wife is a great patient's advocate on medical doctor visits for her mother and other older women.

-Joe-

Subject: RE: BS: Caring for Grandma
From: GUEST,hg
Date: 16 Apr 13 - 08:54 PM

Mom liked Pandora stations of her favorite music. a roku box hooked to the Tv would allow it. to play from the TV. Supplemental oxygen sounds important. A window to look out of or a bed in the family room. The dog on her bed. She is probably ready for a hospice evaluation, Joe. They are better judges of time left. Hospice help would ease your burden, as well.

Dad talks about wanting to die every day now. We. are going to get a hoveround soon as walking is almost impossible for him now. Life at this stage is so miserable for really infirm people. I try to breath in all dad's misery and breath out light and peace. He would take matters into his own hands if he could.

I've been care giving for over six years now so I truly understand your feelings. Take care, buddy. I haven't even been more than sixty miles from home for years . A choice I made freely

love, hg

Subject: RE: BS: Caring for Grandma
From: Joe Offer
Date: 16 Apr 13 - 09:11 PM

Hi, hg - gee, it has been a long time since I saw you last - 2001, at the Florida Folk Festival. I still treasure the tie-die T-shirt you bought me as a wedding present.
-Joe-

Subject: RE: BS: Caring for Grandma
From: gnu
Date: 16 Apr 13 - 09:19 PM

hg... it's a commitment one must make. Mum has been looking after me for almost 57 years (56th Bday a month ago) so it's my turn. It gets harder every day but there is... just love.

GUEST,gillymor.. "Thanks to everyone for their contributions to this thread."

Yes, indeed. This is a very important thread.

Subject: RE: BS: Caring for Grandma
From: GUEST,hg
Date: 16 Apr 13 - 09:44 PM

yeah gnu, it seems a lot of us are caring for our old, old parents. I try to stay in the present with mindfulness. It just is, I guess.

Subject: RE: BS: Caring for Grandma
From: billybob
Date: 17 Apr 13 - 02:55 AM

Morning from England,

yes this is a very important thread, bringing us carers together, makes me know I am not alone.

My mother looked after her mother for fifteen years. I was a small child but treasure the memories I have of sitting and listening the stories my granny had to share. Now I look after my mother, that is the circle of life and how is should be, and yes, its love .

Wendy
xxxxxxx

Subject: RE: BS: Caring for Grandma
From: Bat Goddess
Date: 17 Apr 13 - 08:59 AM

There are many caregivers among us here at the Mudcat community, but each one of our circumstances and situations is different. I'm two classes into a six-class series on "Powerful Tools for Caregivers" -- primarily about how the caregiver absolutely needs to take care of one's self in order to care for the care receiver. About a half dozen of us in the class and each one of our situations are very different from the others, but we all have the stress and need for information in common. And sometimes the isolation or feeling of "why me?". A caregivers' permathread or monthly thread (like the de-clutterers) for exchanging information and moral support and encouragement.

Joe, I'd go with the music for your mother-in-law. Live, of course, is wonderful, but we have so many options for recorded music.

I have a friend (who used to be local, but now lives in Ontario) who plays celtic harp for the dying, to make the passage more peaceful. When she was in the Peace Corps she developed a system for illiterate women to keep track of their fertility cycles so they could more easily practice birth control by their religion's accepted rhythm method. Now she speaks to civic groups -- mostly older men who seem to have gotten through life without ever knowing how a woman's body works -- about her Peace Corps experience and accomplishments. So she tells everyone that her avocations in retirement are teaching old men about sex and helping people die.

Linn