Thursday, May 28, 2009

Options other than a nursing home

The Bible Study group isn't coming today after all.

The leader of the group must have some blood taken out. She has some medical ailment (I can't recall what) for which the remedy is to remove blood from her. Apparently there is some validity to blood letting.

Anyway, when we were chatting yesterday she brought me up to date on one of my mom's friends from church.

This woman is over 90, and after suffering another stroke she finally realized she could not live at home (although she tried). She initially went into a nursing home, but now has moved to a type of a group home, which is now called "residential care home". This is becoming the preferred way to take care of those needing nursing home type care.

I don't know all the details, but generally it is in a actually home which has been remodelled to accommodate around 5 people, each with their own bedroom and bathroom, with common dining and living areas.

There is 24/7 staff to cook meals and attend to their needs. I suppose a nurse comes in at least once a week, and more often if needed.

Apparently my mom's friend is much more comfortable in the group home, because the nursing home was so noisy she had trouble sleeping (same problem my mother had), and she just wants to be left alone, which they will do.

Also, it's cheaper than the nursing home. An added benefit.

If for some reason I can no longer take care of mom at home, I will certainly be looking into a group home for her.

In fact, I think I will start looking into them now. One never knows.

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Tuesday, May 26, 2009

Discovery on Memorial Day

We had a very nice Memorial Day. The weather was nice so I could barbecue, and myself and two of my siblings spent several hours at different time in Mom's bedroom, just talking and telling stories.

I had a "honey do" list of things to be done, one of which was to reinstall the shower doors in my Mom's bathroom. I removed them when we got a handicapped shower chair which extended into the bathroom for easy transfer.

The doors were stored in the very back of a hall closet.

My brother, to whom I assigned this task, started removing things from the closet to get to the doors. Of course, my mother has every closet and storage place in this house full, having downsized seven years ago from a house more than twice this size.

As my brother was removing things, he let out a cry of "I don't believe this!".

Much to his surprise, and every else (except our Mom), there was a large brown portfolio containing all of the architectural drawings he had done in High School and College.

As he is now 62 years old, these were of course, all hand drawn.

He was quite delighted and surprised by the find, pointing out they had survived not just 1, but 2 house moves by our mom.

I guess she knew how much he would enjoy finding them, presumably after her death, because she never mentioned to him she had kept them.

When he told her he was surprised to have found his old drawings, she just smiled.

She knew she did good.

What a good mom.

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Monday, May 25, 2009

"Granny sitter" in car accident

My Thursday "granny sitter" was in a car accident last week. "Granny sitters" are what we call the teenage girls we hired to watch my mom. It's a nice easy term to denote what is required, and the job is generally easier than babysitting.

Anyway, this "granny sitter" had a car accident 2 blocks from my mom's house, as she was going to her next job after leaving here.

She had just bought a new (3 year old) car only 2 weeks before. I expect it's totalled.

She was making a left turn, and was hit by another car.

The intersection is quite dangerous, just a stop sign from one direction, and cars speeding on the street one must turn onto. I will often turn right if the traffic is too heavy, even though I want to go left.

She has a fractured vertebrae and will be in a back brace for 12 weeks.

So I have lost this "granny sitter" for the next couple of months, at least, and my other one is taking a summer job, so I don't know how much she will be able to work.

Anyway, the good news (for me) is one of my brothers is unemployed, so I have him "granny sitting" more often.

And, I am sure to tell everyone who comes, to be careful of that intersection.

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Sunday, May 24, 2009

Memorial Day Gathering

Some (not all) of my siblings will come visit Mom for the Memorial Day Holiday.

If it's not raining we will barbecue. My mother continues to enjoy eating, and she quite likes steak, so I think that's what we will cook.

I told my brothers we need to try to "hang out" more in Mom's bedroom and carry on our conversations. This was what I wanted to happen for Mother's Day, but somehow no one "got it".

I can tell my mother understands most everything which is said, but she doesn't really talk.

I am not very good at carrying on a one sided conversation, but when the home health aide is here, I know Mom enjoys listening to our conversations.

So, we will take this opportunity to gather 'round her bed, and probably tell stories from our childhood.

I got my Mom to tell some pretty good stories after she had her stroke, which I might just share.

Every family has it's secrets.

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Wednesday, May 20, 2009

Mom thinks she can drive

A few months after my mom's stroke, she thought maybe she would be able to drive the car again.

I told her I didn't think it would be very safe, for her, or the other people on the road.

Her retort was "I can probably drive as good as Earl*" (one of my brothers), who is a very bad driver.

I laughed, as I could not dispute this statement.


*name changed to protect the guilty

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Visitors

My mother attended Church faithfully. She went to Sunday School, Sunday Morning service, Sunday Evening service, and Wednesday evening service. Basically, whenever the doors were open, my mother was there.

After her stroke, there were 3 things she desperately wanted to do again.

1) Go to Sunday School
2) Go to water aerobics
3) Drive the car

Well, we managed 1 & 2, but I wouldn't let her attempt to drive the car again.

Anyway, her Sunday School group was her social network. She has known most of these people for 40 years or more.

I had invited them to the house for lunch not long after Mom was home after her stroke.

And, up until last fall, she saw them almost every week at Church.

Now that winter is over, I have decided to invite them again. It will probably be in a couple of weeks.

I asked my mom if she would still be "perky" in a couple of weeks, so as to enjoy some visitors.

She said, oh so wisely, "I don't know".

At least it's something for her to look forward to.

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Tuesday, May 19, 2009

Decorating graves for Memorial Day

I will go decorate graves for Memorial Day. My dad's, my sister's, and my mother's parents.

My mother was always big on this. I think it's that generational thing.

Dutiful Daughter had this comment regarding visiting "resting places".


Blogger Dutiful Daughter said...


Now Mother’s Day means buying a bouquet of flowers, leaving half in Dad’s apartment for him to enjoy, and taking him to leave the other half at Mom’s memorial, (where her ashes are in an urn in a “niche”). I confess that I had to learn the behavior of visiting Mom’s niche. Mom died in April two years ago and Dad (pre-heart attack) was critical that I hadn’t gone to “visit” her. I got defensive and said that it hadn’t occurred to me to go there because I didn’t consider Mom to be there.

Now I’ve learned to take Dad there regularly during the season that flowers won’t freeze and to honor Mom with a “visit” on Memorial Day, the anniversary of her death and the anniversary of their anniversary. It would have been 60 years for them this year. I know I’ll continue to go when the ashes of the love of her life are in the niche beside hers.

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Monday, May 18, 2009

Hairwashing makes mom puke

As I said before, we started washing mom's hair by moving her to the top of the bed with her head overhanging.

The problem is, mom often gets nauseous from, (I guess) having her head tilted back.

I don't really think it is "beauty parlor stroke syndrome", but I have decided to change and have the home health aide use the special stuff to wash her hair - she says it was developed for astronauts.

I guess it's probably the same stuff that's in the no rinse shampoo caps.

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Friday, May 15, 2009

What's wrong with me?

I can't believe I didn't notice I took the last pad out of the package. I must be loosing my mind.

Thank goodness the home health aide called before coming today to ask if I needed any supplies.
She is very good, and hardly ever forgets to bring the supplies I need, and, obviously is more aware than I am when we are running short.

Since I put the comforter on my mom's bed to alleviate bedsores, keeping it dry has been utmost in my mind.

I put a pad directly under my mother, then, one under the turn sheet, then another under the regular sheet and on top of the comforter.

Despite all this, I am afraid that last night there was leakage clear through. The first and 2nd pads were not in the correct positions.

We shall see, as today we change the sheets.

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Thursday, May 14, 2009

I am furious!!!!

I am so mad I am "spitting nails". I really shouldn't be, but it's like that mothering instinct to protect her children.

My brother came today to help take care of mom. It's really nice as he has been the most helpful of all of my siblings, but.... he has some mental issues, so sometimes it's difficult to have him around.

He has been moving my mom for 2 years now. Maybe I should have trained him better, maybe I should have been watching him closer. You just get tired and glad there is some else to help out.

Long story short, this morning as I was cooking her breakfast I asked him to set her up in bed.

He did, then told me he was going outside to work. I thought he made a pretty hasty exit.

No wonder, when I took her breakfast, glaring at me was big gash on the back of her hand, about 3/4 inch wide and almost 2 inches long. It's superficial, just the skin pulled back. I immediately confronted my brother about what happened.

Apparently, my mother got her left hand under her when she was sitting up. This is not unusual, as it is basically paralyzed. So, he pulled it out from under her. Apparently not very gently.

I immediately called the hospice office and asked if the nurse could come to bandage it. A nurse in their office phoned back, told me to take a swab and gently pull the skin back over the wound area. I asked if I should put any ointment on it, they said no, just some water if needed.

I did it - the skin was pretty much in place anyway, but had already started to dry a little.

The nurse will come sometime today, but that means that I will need to stick around, rather than taking the day off.

And, I can't trust my brother anymore to move her.

I don't know, maybe when I calm down I can again review with him how to move her. I keep telling my brother to be gentle.

They throw her around like she is a rag doll.

I don't know who I am more mad at, myself or my brother.

This sucks.

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Wednesday, May 13, 2009

Avoiding bedsores

I had really resisted getting a hospital bed for mom. She absolutely hated being in one in the nursing home.

She had a tendency to sleep on her side and toss and turn, and that is difficult to do so in a single size bed. Also, she had a foam pad on her bed, and I knew this would help to avoid bed sores. The idea of trying to turn her to avoid bed sores was more than I wanted to deal with, considering everything else I had gone through.

Finally, after 19 months of home care, she go no longer stand up.

We then put her under hospice care.

This is when the hospital bed arrived, and along with it a mattress pad which circulated air to prevent pressure sores.

Great! No chance of bed sores.

Wrong!

After the first sign of bed sores, I took some preventive measures, other than turning her.

This is what I have done to alleviate bed (or pressure) sores.

1) On top of the cirulating air mattress I have placed a cheap but thick queen size comforter, folded over. This gives enough cushion to alleviate most severe pressure points.

2) I check her bottom and back in the morning for red spots. If I find any, I apply a product with lanolin. The one I use is called Corona, which I buy at the animal feed store. I find it is less expensive and comes in larger quantities which I need.

Doing these things seems to do the trick.

I will be honest, I do not get up and turn her every 2 hours. I do turn her sideways in bed 2 or 3 times a day, and change her position when I change her diaper, but that's about it.

I just make sure her bottom is cleaned really good every time I change the diaper.

So far, it's working. It's been 2 months, and she did get 2 bedsores in the beginning, but those healed up with the Corona.

The feet are another issue, which I will blog about later.

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Tuesday, May 12, 2009

Washing hair in bed

One of the things my mother always enjoyed was getting her hair washed. I use to wash it in the shower - we had one of those large handicapped chairs which can be placed in a bathtub, or in our case, in the walk in shower.

My mothers hair is very fine, so it get dirty and greasy. She was never one to go to the beauty shop, so getting her hair done professionally is not something she missed.

However, once they had to start giving her bed baths, as trying to get her into the shower was difficult and a bit dangerous, getting her hair washed with a washcloth just didn't cut it.

I had purchased some no-rinse shampoo caps. I first learned of these when my mother was in the hospital. You put them in the microwave to heat them up, and then they are like a shower cap with stuff inside of it which shampoos and conditions the hair, with no rinsing. Amazing.
The manufacturer of the one I purchased is CleanLife Products www.norinse.com

These work quite well. However, I ran out of them, so as they say, necessity is the mother of invention.

What I asked the home health aide to do was to move my mother up on the hospital bed (with my help)where her head overhung. I put pillows under her neck, covered with a trash bag to keep them dry, and then a towel. I placed a wash pan on the floor underneath her head, and then placed plastic trays up against the wall to protect the wall from splashing water.

I then had a dishwasher soap bottle which had just been emptied, so I rinsed it out and filled it with warm water. I used this to dampen her hair, the home health aide applied shampoo and massaged it in, while I refilled the bottle to rinse out the shampoo.

My mother hates to get water in her ears, so I always have to remember to put in the ear plugs, and take care if water gets in the outer ears.

After the rinse, we wrap her hair in a towel, and I blow dry it as she lies in bed. This quite often puts her to sleep.

We are getting pretty good at this by now. I haven't timed it, but I don't think it takes more than 7 minutes for the whole operation, minus the hair drying.

Nothin' like a bath and clean hair, especially when you are confined to bed.

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Monday, May 11, 2009

Boy do I feel stupid

My mother had problems sleeping after her first stroke.

In the beginning it was because they would wake her every 2 hours in the rehab hospital, so they could take her blood pressure.

Then at the nursing home she had trouble falling asleep, only to be woke at 5:00 AM.
That's right folks.
My mother said "I thought this was called a "rest home", but they sure don't let you rest!"

When I took her home I thought she would then be able to sleep.

No.

Long story, I finally out of desperation started taking her off medications. Finally found out it was the Plavix which kept her awake.

For the last year I have been giving her Benedryl to sleep. I thought it worked. But the other night after I gave her cough syrup instead of Benedryl, I realized she was much "perkier" during the day, so I tried it again.

Sure enough.

I think the Benedryl has the opposite effect on her, which would not be surprising. More on that later.

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Sunday, May 10, 2009

Happy Mother's Day

Happy Mother's Day to all mothers, or those who are "mothering".

Although I am not a mother, I am certainly in the roll of mothering my mother.

Seeing her decline is watching life in reverse. Each month she gets a little weaker, looses a little more ability. She is wilting like a flower.

And I hover around like a worried mother.

Last year she said to me "you worry too much".

I probably do.

She had five kids and probably learned to not be so nervous.

I will try to take her advice.

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Saturday, May 9, 2009

Things NOT to ask mom

The New York Times has an article entitled "Questions We Should All Ask Mom".

This was number 4.


Which one of us kids did you like the best?


Are these people flippin' nuts!!!!

Why on earth would you put your mother on the spot like that. Mother's are not suppose to have a favorite child (although they normally do), and everyone pretty much knows which child is the favorite without it being spoken.

Those favorite children are the ones who were the least trouble, and who maybe accomplished something.

These days the favorite child is the one who doesn't need money.

My mother was always very good about not showing favoritism amongst her children. It must have been really hard because I have some siblings I would rather not admit being related to.

However, after my mom had her stroke she told me some stories which help me understand.

But, that's for another blog post.

Read the NY Times article. The other points are valid, as well as the commentary, especially regarding what gifts NOT to get mom on Mother's Day.






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Mom quit coughing (and not because she died)

My mom had a cough this last week. I thought it was allergies, so I gave her allergy pills, which helped for 3 days. Then it started again, so after doing some research on the internet (so as not to kill her off) I decided some cough syrup wouldn't hurt.
So for the last 2 nights I have been giving her cough syrup.

This morning, amazing! She hasn't been this talkative in weeks.

Maybe it was the cough syrup. Maybe it's the allergy pills. Maybe it's because it's been raining, which took the pollen out of the air.

Whatever it was, mom is doing much, much better. At least as far as talking and eating, and not sleeping as much.

But that's for today. Who knows what next week will bring.

She continues to loose weight. The skin on her behind is loose. The nurse commented how mom is so thin, that anywhere she puts the stethoscope on the chest area, she can hear a heartbeat. The nurse confirmed her lungs are clear, which was my main concern.

Everything I have read, talks about the "gurgling sounds" which patients make when the lungs are filling up. They say it often bothers the family, but that it is not painful.

Well, how would they really know this?

I remember when everyone use to say a hook in a fish's mouth didn't hurt them either. I never believed it, and recently there has been a change of opinion about the fish.

Maybe they will change their mind about this also.

I just hope and pray when my mom dies, that it is quick.

Well, forget that pray bit. I'm kind of mad at God. He hasn't answered those other prayers, so I don't know why I would get this one answered.

Now I know why the Greeks had more than one God.

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Friday, May 8, 2009

What to do for Mother's Day?

All of our immediate family will come for Mother's Day. That will be a total of 9 people.

When my sister asked what we should do for Mother's Day, I decided to delegate it to her. She is arranging for the food, and we will get mom cards and flowers. This will be the third year buying a Mother's Day card for her, thinking it might be the last.

Last week I asked mom what she wanted for Mother's Day.

When she hesitated, I spoke what she was probably thinking, "a new body?".

She said "that would be nice", and we both laughed.

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Thursday, May 7, 2009

No respite today!

I hire a couple of different teenage girls to come stay with my mom. Well, actually my mom's money pays for them.

Thank goodness she has money.

I don't pay them much - about the same they would make babysitting. But it's a pretty easy gig.
All they have to do is feed mom, and change the TV.

In the beginning I asked them to vacuum, load the dishwasher, fold clothes, but here lately I haven't asked, and they haven't offered.

We have all been doing this 2 years now, and I think we have all hit burn out.

But, they are teenagers. They are much more interested in texting, or watching TV, or reading.

Today one of them called in sick. It doesn't cause me too much trouble as I didn't make any specific plans.

So, I think I will be lazy. Sit on my butt. Watch TV, read, play on the computer..... be a teenager.

The laundry, dishes and vacuuming can wait.

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Wednesday, May 6, 2009

Holding hands

Last night when I was standing at my mother's bedside, she was anxiously trying to get her hand out from under the covers.

I thought maybe she needed to wipe her nose, but then once her hand was free she reached up to take my hand.

She has been holding my hand a lot lately. It's really sweet.

Especially as she has never been a very demonstrative person.

I guess this is her way of saying "thanks for taking care of me, and I love you".

As I type this, tears are rolling down my cheeks.

God, sometimes it is just so hard. Not necessarily the physical work, but just the emotional strain.

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Tuesday, May 5, 2009

I don't want to go in there....

It's time I go in and at least check on my mom. It's already 9:00 AM.

But I don't want to.

Firstly, I am always afraid she will be dead. If she is dead, another half hour won't make any difference.

If she is not dead, then the day begins again. The changing of the diaper, the crushing of pills, the sitting her up in bed, the feeding, brushing her teeth.

She cannot sit up by herself, and just raising the hospital bed only seems to put her chin into her chest, if she is not at the very top of the bed. And, if she is not all the way to the top of the bed, it's a little difficult to pull her up by myself.

So, I turn her sideways in the bed, putting pillows behind her and around her, propping her feet up on a chair.

It's not easy. I put my left arm under her knees and with the right I reach around her back, holding her like you would a child. I pivot her into position, being careful of her left knee which always hurts a little when I move her.

Once I get her set up, I put on her bib, then arrange a pillow in her lap to level the food tray.

I get started on breakfast.

And the day begins again.

She has been in the hospital bed continually for over 2 months now.

That makes me depressed just thinking about it.

So, I just won't think about it.

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Monday, May 4, 2009

Signs of dying

When my husband died (more on that some other time) he heard the death rattle, and said to me "is that the death rattle". I assured him it was not, because, how is it possible a dying person can know this and say this. Boy was I wrong. He died about 1/2 hour later.

There are many symptoms that occur that indicate that we are approaching our death. One of the most well-known is the death rattle. The death rattle is a sound that is produced when air moves through mucus that has accumulated in the throat of a dying person after loss of the cough reflex and loss of the ability to swallow. This is a very common symptom, though it does not always occur prior to death. The death rattle does not cause any discomfort to the patient, however, family members frequently find the sound distrubing


My mother could be dying, although a year ago she had a dream she had died, so I don't think she is following the guidelines.

She was always one to do her own thing.

I found a site with passive and active signs of dying.

click here for complete list

Signs of the Active Phase of Dying

  • inability to arouse patient at all (coma) or, ability to only arouse patient with great effort but patient quickly returns to severely unresponsive state (semi-coma)

  • severe agitation in patient, hallucinations, acting "crazy" and not in patient's normal manner or personality

  • much longer periods of pausing in the breathing (apnea)

  • dramatic changes in the breathing pattern including apnea, but also including very rapid breathing or cyclic changes in the patterns of breathing (such as slow progressing to very fast and then slow again, or shallow progressing to very deep breathing while also changing rate of breathing to very fast and then slow)

  • other very abnormal breathing patterns

  • severely increased respiratory congestion or fluid buildup in lungs

  • inability to swallow any fluids at all (not taking any food by mouth voluntarily as well)

  • patient states that he or she is going to die

  • patient breathing through wide open mouth continuously and no longer can speak even if awake

  • urinary or bowel incontinence in a patient who was not incontinent before

  • marked decrease in urine output and darkening color of urine or very abnormal colors (such as red or brown)

  • blood pressure dropping dramatically from patient's normal blood pressure range (more than a 20 or 30 point drop)

  • systolic blood pressure below 70, diastolic blood pressure below 50

  • patient's extremities (such as hands, arms, feet and legs) feel very cold to touch

  • patient complains that his or her legs/feet are numb and cannot be felt at all

  • cyanosis, or a bluish or purple coloring to the patients arms and legs, especially the feet and hands)

  • patient's body is held in rigid unchanging position

My mom has the problem with build up of fluids in the lungs, but not really any of the other stuff.

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Sunday, May 3, 2009

Some help

From another blog SHARE LINKS


You know what my mom really wants? And needs? What anyone in her situation probably wants and needs? A clean house.

She needs the laundry done and furniture dusted and surfaces de-cluttered, but all these tasks pale in comparison to my father’s needs, so they go undone. She practically wept with gratitude when a home health aide came and changed the bedsheets and vacuumed (you know, because she was paid to do that). She wants nothing more than clean kitchen counters and folded towels and anything that makes life seem a little less like it is now, and more like it once was.


That's what I want too. That's what I thought I would get when my sister offered to come over and clean house (for my mom's birthday present).

When she arrived I was busy with my (our) mom and the home health aide, as well as giving instructions to my brother who was also there that day to help, doing yard work.

Then, one of my other brothers phoned. He was finished getting a medical procedure done, and the person who was to pick him up was MIA. So, I offered to pick him up, take him to get his prescription and take him home. At least it was a chance for me to get out of the house.

My sister wanted to know what to do (apparently she couldn't figure out how to clean up my mom's house). I told her the desk needed clearing off, and vacuuming, dusting, etc.

When I returned 2 hours later she was vacuuming, but complained she couldn't get anything done because I wasn't there to tell her what to do.

I looked at the desk, which was still loaded down with stuff. I said "why didn't you clean off the desk"? Her reply, "Oh, I forgot".

She left about 1/2 hour later as she said she needed to get home. I wasn't really sure why. Her husband works out of town and her children are both over 16.

The only thing she managed to get done was vacuum.

Guess I shouldn't complain.

As my mother says, she figures complaining won't do any good.

Wow, mom is right! Again!


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Saturday, May 2, 2009

On taking naps

Since my eye started twitching I realized I must find ways to relax.

One is to take naps.

I am not a nap taker. However, I am finding that if I lay down for half and hour, even if I don't sleep, I feel better.

Thinking about taking naps reminded me of when I was a young child of around 3 or 4. My mother insisted I lay down to take a nap, but I insisted I wasn't tired. She instructed me to "lay down anyway, you will fall asleep".

Much to my shock and quite frankly dismay, I did fall asleep. I remember thinking when I woke up "rats, mom was right!".

Over the years I have had to say that many many times. But by now, I leave out "rats", and usually just say "wow, mom was right".

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Friday, May 1, 2009

How can you tell when they will die?

I have been searching for information on how to know when someone will die.

The hospice people don't really talk about this, at least in the beginning. I suppose also because we are so prepared for my mom's death, we didn't need those discussions. My mother has a DNR, "do not resuscitate order" which was signed 5 years ago (when my mother was healthy). Her funeral was planned and paid for a number of years ago.

I know if my mom were closer to death, the hospice nurse would be saying something. All she has said is "when your mom quits eating, you will have to worry about skin breakdown".

My mom had trouble breathing again last evening. This happened last week, and I was quite certain the problem was allergies and congestion from "nasal drip". I started giving her allergy pills a few days ago, and that seemed to do the trick. However, today the problem reappeared.

It is so hard watching her trying to cough. She can't sit up (or even roll over) unassisted. Whenever she tries to cough I help her sit up, but that doesn't do the trick. I am finding that giving her ice chunks helps her to cough.

Why this really worries me is because I wonder if her lungs are filling up with fluid. She has congestive heart failure. Maybe this is the problem.

I got some cough syrup and will give it to her tonight so she can sleep. I hope it doesn't kill her. I'm quite sure it won't. The hospice nurse comes tomorrow so I will discuss it with her.

Update - next morning mom was snoring peacefully. Hope she got a good nights rest. Another day of caregiving begins.

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