Sunday, August 30, 2009

Butterflies for Funerals

Apparently one of the latest trends is to release butterflies at funerals.

Here is a link for "Funeral Butterflies".

I have mixed feelings about this. The ad says they will refund your money if the butterflies do not arrive "alive and on-time".

When I first started organic gardening, I decided to order lady bugs by mail order.

Problem was, the mail carrier put the box between the screen door and the wooden entry door, and by the time I found them they were all dead. It was hot and they basically died from, heat stroke, or whatever happens to bugs.

I always felt really horrible about this, and never ordered any more bugs. I learned to plant things which would naturally encourage beneficial insects and butterflies to thrive.

So, I think maybe planting a butterfly bush in memory of a loved one might be better for the long term survival of the butterflies.

Furthermore, having dead butterflies arrive for the funeral, well.... I might find the humor in that, but most folks won't.

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My "things to do list"

No, this is not my list of things to do taking care of Mom.

This is my fantasy list, of things I might do after she dies.

When I was working (at a 8-5 job), I, like most people, had that list of "things to do when I retire".

After I quit working, I managed to get most of the things on that list accomplished.
1) Live overseas
2) Learn a foreign language
3) Sleep late, do nothing
4) Read 4 newspapers a day
5) Take a train trip across the U.S.
6) Do road trips

Things like that.

I enjoyed doing them, but actually got a bit tired of travelling, which seems quite impossible for someone who loves to travel. But, it's like anything, too much of it and one tires.

However, now that I have been tied down for a couple of years (well, not really, as I have managed a cruise, a trip to Italy, a month in S. Texas), I am starting my list of "things to do", after Mom dies.

It's a way to keep my sanity. A little fantasy to escape the mundane day to day.

One of the top items on my list is to live in New York (Manhattan) for a month.

Because of the economic downturn, it's much easier to find an apartment to sub-let.
The NY Times has an article on this subject.

Although I have worked in Manhattan, I have never lived there. And, it would be so fun to live there when you are not working - to be able to visit museums, shows, all the sites, without wearing yourself out trying to squeeze in all the "things to do" in a week or two.

Living overseas for a year or two, teaching English is also on the list. Korea and China look promising.

Visit Vietnam. I was to go there in Oct. 2001 - even got my visa, but then decided it might not be the best time to be travelling.

Finish working on my house. I have a house I am trying to rehab. I bought it 2 weeks before my Mom had her first stroke. Needless to say, progress has been slow.

However, the nice thing about it taking so long is I can change my mind 3 times. I have no deadlines, no pressure. I continue to look at magazines and books for decorating ideas.

I can remember when I was young, mother use to always say "I will be so glad when you kids grow up". I know she felt tied down, and longed for freedom to work on "her list".

She spent at least 25 years raising her children, so I certainly should not be whining about a few years taking care of her.

But, I think it's quite health to fantasize, and plan. Especially the planning and researching part. That's a good way to utilize my time now.

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Saturday, August 29, 2009

*Alert* - Complaining about my sister

So, my sister phoned the other night.

She has a new cell phone and wanted to check out the coverage. She doesn't have many friends, so of course she phoned me.

I thought I should bring her up to speed on what's going on with Mom. My sister never offers to take care of Mom, so she doesn't really know what is going on - only what I tell her.

My Mom has been coughing because of allergies. Apparently the ragweed is quite bad now. I gave her some allergy medicine. My sister's reply to this was "yes, I don't mind that she gets it once in a while".

I thought "what, YOU don't mind it! You, who never spends enough time with our Mom to know much of anything about her current condition? You, who doesn't have to worry every day about what's going on, because I am taking good care of our Mom!!"

But, I said nothing. I just decided to tell her I had to go. You know, take care of Mom.

Goodbye

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The Chaplain came to visit

The Chaplain from Hospice called yesterday morning, asking if he could come visit my Mother.

When I first heard his voice on the phone, I thought it was my Mother's minister.

I wonder if all of these guys are taught to use to the same, soothing sounding voice when dealing with old dying people. Probably so.

Anyway, the Chaplain came and spent some time with my Mother. I left them alone, so that my Mother would have to respond to him. She tends not to talk unless required.

I have always found it a little strange that my Mother's minister never comes to visit. He was here last Feb. when she first went under Hospice (thinking she would die soon, I presume), and he saw her a couple of times when she was in the hospital. But that's it. It really bothers me, as she goes to a small church, and has attended faithfully for 50 years or more.

However, the minister made a comment during his visit that might explain his lack of visits. He said when his Grandparents were elderly, with dementia or Alzheimer's, that they were not the same people he knew growing up.

I think perhaps he is afraid he would have to deal with my Mother saying inappropriate things, although my Mother has never done so.

And, I am not going to call him to come visit. Every time he sees my Mom he makes her answer all these questions about her beliefs, as if she were Catholic or something.

At least the Chaplain just sings songs and says stupid things which he thinks are amusing.

My Mother is probably not very amused by his visits, but, at least it's a visit.

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Wednesday, August 26, 2009

Advice from Leeza Gibbons

I ran across an article written by Leeza Gibbons, who has written a book entitled "Take Your Oxygen First".

Chances are if you are a family caregiver, you either don’t know it, don’t want to know it or you are just so overwhelmed that you could crack at the very suggestion that you should “Take Your Oxygen First”. Yet, there are 50 million husbands and wives, brothers and sisters, sons and daughters out there taking care of a family member or loved one. And here’s the deal….they are dying!
.................
I encourage caregivers to remember to apply TLC to their experience:

The T: Be tough enough to ask for help. It is a sign of personal strength.

The L: Be loving enough to forgive yourself and others. You (and they) will make mistakes. You’ll be short tempered, they’ll be selfish. Whatever it is, forgive. That is release and it is the only way to get through this.

The C: Be courageous enough to change the things you can change and compassionate enough to let go of the rest. Sometimes, there is no answer and simply, “It is what it is.” Let that be enough.

click here for link to complete article

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Trouble with vision

After my Mom had her first stroke, she had trouble reading. It got better, then worse again.

We took her for analysis, and the problem was identified as "tracking". Her eyes would not work together to follow the words. We tried putting a patch over one eye, but nothing really worked. It was quite sad, as my Mother loved to read.

The year before her stroke I would check out books at the library for her, and she would sit and read for a good part of the day. She really enjoyed some Christian historical series which I had found. I couldn't get her to go to the library herself, but boy did she love it when I went for her. I realize now it was probably too difficult for her to walk that much, and she might have had trouble even finding the books she wanted. She would never admit it at the time. I suspect she had memory and cognitive problems then, that she was hiding.

Anyway, back to the vision.

Recently, I noticed she would close one eye to look at me, or the TV. She would actually close what we have considered her "good" eye. I am quite certain she is having trouble focusing, and is closing the eye she can best control, as a way to be able to see more clearly.

Also, she is having some depth perception problems, as when she does try to feed herself (which is not often) she has great difficulty "stabbing" the food - often hitting the plate just behind the piece of food she is aiming for.

No wonder she doesn't try to feed herself more. How frustrating it must be.

I am glad I can take care of her and feed her. When she was in the nursing home, they had 1 person as a "feeder" for about 5 or 6 people at a table. Then, probably if you didn't eat, they would just give you a can of Ensure.

Yuk.

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Tuesday, August 25, 2009

Shopping for a pillow

My boyfriend and I were talking about the desire to move overseas and teach English.

The fantasy that "one day, after Mom dies".

My boyfriend suggested we go to Wal-Mart, to buy a large pillow.

I didn't really understand, until he explained, that (as I joked in a previous post), I might need it to "put Mom out of her misery". (just joking...)

I replied "I don't need a large pillow to do that".

He laughed.

It's nice when you can laugh.

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Mother's Keeper

The NY Times has an article on a woman taking care of her mother (who has Alzheimer's), and is stay-at-home-mom. (click here for link)

It's like so many stories on this subject. After a while they all sound the same.

But, the point it makes is the problem of caring for a parent is, it ties you to the house.

That's the problem I have.

It's not really so much the actual work of taking care of Mom, it's just the fact that I can't leave unless someone is here.

If I were the kind of person who enjoyed staying at home, never leaving the house, it would be OK. However, I am almost the opposite. I have always hated staying at home. When I quit working, I never stayed at home all day long. I always had to get out of the house, several times a day.

I think we need to set up a matching service, where people with Agoraphobia are matched with caregivers, so they can just come and stay in the house when we have to go out.

Of course, getting them out of their house will be the first problem. I guess they would have to be "live in".

Just a thought.

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Sunday, August 23, 2009

Elder Care Talk Radio

There is a new talk radio program on Elder Care.

This is the link

The mission of ElderCare Talk Radio is to assist those in our community who are coping with caregiving issues. To address the often difficult tasks we are faced with including

* Change in Living Situations
* Chronic Illness
* Life Transitions
* Elder Communications
* Financial Decisions
* Legal and Medical Decisions
* Homecare Logistics
* Coping with Stress
* Death and Dying
* Healthy Aging
* Care Management
* Assisted and Independent Living Information
* Senior Programs and Services
* And Lots, Lots more

I'll try and check it out.

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Saturday, August 22, 2009

Mom sleeps a lot

Yesterday my Mother slept all afternoon after her bath. As she was snoring, I didn't have the heart to wake her up to eat. She was so comfortable, sleeping, snoring, the sunlight on her face.

Finally, about 7 PM she woke up. I fed her. She ate grilled salmon, and fried okra. Then, I asked her if she wanted strawberries and ice cream, and she said yes.

So, she is still eating well.

This morning she woke up late - around 11:00. She ate a lot for breakfast, but could barely keep her eyes open before we were finished.

I suspect one of these days she might be too tired to wake up to eat. But, she sure enjoys eating, so I don't think it will be any time soon.

It really is life in reverse.

Sleeping, waking to eat, getting your diaper changed, then doing it all again.

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Why I write this blog

I started writing this blog because my boyfriend was tired of listening to my tales of woe.

He didn't really say anything, but I could tell.

Furthermore, you know how guys are. You tell them about your problems, and instead of just listening, they try to tell you what you can do to fix the problem.

I'm not stupid, and I resent being told what to do.

Holding a pillow over my Mother's face is really not a solution to the problem.

(I am just kidding - he did not suggest this).

But you do learn to cope. I learn to not expect so much. Not from me, and not from others.

One way of not being disappointed is to lower your expectations.

I don't recommend this in all aspects of life, but sometimes one must, just to keep from going crazy.

This is one of those times.

The day will come when I can walk out of this house, and not look back.

But, I suspect, not soon.

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Friday, August 21, 2009

I made the aide cry

No, I wasn't mean to her.

We were talking about my Mom. How much she has declined since the aide first met her in February.

Apparently at one of their staff meetings a few weeks ago, the assessment was that my Mom doesn't talk. The aide took exception to that.

However, my Mom doesn't talk much. Not now.

She talked more in February, when the aide first met her, and that's what sticks in her mind.

When I mentioned this today, I could tell it kind of upset the aide. And a few moments later she was sniffling. I gave her a tissue. No words.

I always think hospice home health aides are use to this...but in a way it's nice to know they aren't. At least not this one. And she has been doing it a long time.

I thought she would be use to this kind of thing.

But, I think my Mom has a special place in her heart.

That's a nice thought.

We get so few.

Nice thoughts, that is.

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Thursday, August 20, 2009

Sometimes I cry

Not sobs, just tears running down my cheeks.

Sometimes I remember my Mom as she use to be, and it makes me sad.

Then I think about how much worse it could be.

She got worse, then she got better (probably thanks to my good care).

But, it is still just so sad. Her existence.

It's not really correct to call it living, although she is.

I think I cry, because someday, I will be just like her.

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Thursday, August 13, 2009

Mom tires of Strawberries and Ice Cream

The last couple of days my Mother has declined strawberries and ice cream.

I don't know if it's because she has tired of it, or if she just doesn't want to eat as much.

Today my brother was here, and he noticed she was having trouble keeping her eyes open, as I have noticed the last couple of days.

But, tonight she seemed OK.

I always think that one of these days she is just going to die. That has been the history of her family.

I am prepared for it, but even so, I suspect I will be surprised.

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Sunday, August 9, 2009

Drama at the Home Health Agency

People who come to your house every week tend to become like family.

We have now had 3 hospice nurses, but only 1 home health aide.

The home health aide is a dear. She is a single Mom with 4 children, and does a wonderful job.

I presume they are told part of their job is to talk to the caregiver (me) because often the caregiver is more of a problem than the patient.

It's also a give and take. I enjoy hearing about what is going on in someone else's life.

I blogged some time ago about the social worker.

Well, she was let go, and then had a nervous breakdown. She went a little (or a lot) crazy, harassing the office workers at the agency from which she was fired.

There are other problems at the agency, specifically with the office manager.

I got an ear full last week from the health aide, and apparently the owner is calling her to find out what's really going on in the office. They fired a nurse (who said she didn't know why she was fired), and a home health aide quit.

I tried to give our home health aide some advice on how to handle the situation.
First or all, don't go in the office and talk to the owner - call him on his cell after hours to give her take on the situation.

I am anxious to know what happened.
Like I said, they become like family.
Although now it's feeling more like a soap opera.

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Saturday, August 8, 2009

Ibuprofen keeps Mom awake

My Mother is very sensitive to medicines. Plavix kept her from sleeping for 3 months (until I took her off of it). Sleeping pills have the opposite effect on her, as does Benadryl.

For months I was giving her Benadryl at night to help her sleep, and only after a long time did I figure out it wasn't really helping.

Now, I have found out that ibuprofen keeps her awake. How strange.

Because of the boil she had, the nurse suggested ibuprofen might help with the swelling from the infection. I gave my Mom just regular strength ibuprofen, 2 times a day. After about 5 days I realized she wasn't sleeping during the day.

Normally she will take a nap for 1-2 hours after she eats. Last Sunday she didn't sleep, the entire day.

On Monday, she was "out of sorts". Even the nurse noticed.

So, I decided it had to be the ibuprofen. Nothing else had changed (this was before she was taking the anti-biotics). I quit giving her ibuprofen, and the next day she was sleeping better.

Now she has caught up on her sleep, appears to have a little more energy, to the point she is making an effort to feed herself, even "stabbing" the food herself.

Amazing.

What is so disturbing about all of this is, when she was in the nursing home, all they could (or would) do to attempt to help her to sleep was to give her more pills.

They put her on an anti-anxiety pill, and when that didn't work, and anti-depressant.

No one even suggested that maybe her not sleeping was because of some of the medication.

Less is more.

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Friday, August 7, 2009

Using Google for health care advice

It's really amazing what one can find on Google.

Many medical professionals really hate it when we "lay people" use Google to attempt a diagnosis or cure.

But, they have a good reason to fear it. It does a darn good job.

Here is one of the many sites I found when I Googled "how to cure a boil".

How to Cure Boils Naturally

Our home health aide said she found a treatment for her daughter's eczema by using Google. The treatment is Crisco!!

I Googled "how to cure eczema with Crisco" and found this site.

The Doctors had wanted to put the little girl on steroids. Ugh.

All they seem to be able to do is prescribe pills. Too bad a little common sense and old fashioned remedies aren't tried first.

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Sunday, August 2, 2009

"The Boil" continues

The boil has decreased, but it is not totally gone. I keep applying the castor oil, but it is not drawing out the last of the infection. It's been a week since it was so bad I phoned the nurse (on a Saturday).

The nurse comes tomorrow. I'll see what she thinks, but we will probably get some antibiotics.

There were never any red streaks, which would have meant the infection spreading, but I suspect there is still some infection.

With all the talk about the new health care proposals, I will put in my 2 cents about "advanced directives".

My Mother signed a DNR (do not resuscitate) order for herself, after my father died (of pneumonia). A DNR is not an advanced directive. An advanced directive just gives instructions as to your wishes, so for her DNR is part of it. She has always made it clear she wants no extraordinary measures to keep her alive.

Last year I was afraid she might be getting pneumonia, so I had my sister talk to my Mom, so see if she would want antibiotics. I had my sister handle this, as she does hold the health POA, and I did not want to be accused of swaying my mother.

My Mother stated a very strong NO.

The reason I mention this is, obviously the boil didn't kill her, so now it's just going to be an annoyance. Which, is why I would suggest antibiotics.

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