I am so glad this is over

My sister arrived.

God, I can't stand her.

I know that sounds horrible, but she just gets on my nerves.

No wonder we fought so much as children.

When she came in, she went straight into my Mother's room, straight to the closet, not even stopping to pay respects to our dead Mother.

She spent 10 minutes talking to the mortician about nothingness.

I am staying in the other part of the house, mainly because I had a coughing fit, and thought it best not to cough on everyone else.

But of course, the other reason is I just had to get away from my sister, for fear of saying something really snarky to her.

Mom died

Mom died. The hospice nurse is here. The mortuary is on the way.

I'll write more later.

Day 5 - update at 4:00 PM

Well, I gave Mom morphine, plus Ativan , plus atropine (which is to help dry up secretions)

She is breathing a little better, but seriously, only a little. The morphine is suppose to dramatically reduce one's respiration rate, but it's not working as well as I would have thought.



And, as to my boyfriend. He has been transferred to another hospital, and they have the catheters in to do emergency dialysis.

Good thing. I don't need him dying too.

Day 5 - trouble breathing

Mom is having trouble breathing. Basically hyperventilating. I turned the oxygen up to 4 (it had been on 3).

Then I phoned the hospice nurse to see if there was some other medicine they had to give her. I didn't think the morphine was relaxing her before, and the Ativan she is managing to spit out, even if it's crushed and dissolved.

She suggested Tylenol rectally. Tylenol? I think this woman is nuts.

The nurse said there wasn't anything else. I found this a bit disappointing, as I thought they could come and give her a shot of something.

So, I have gone back to giving the morphine.

And I will probably again try the Ativan.

Day 5 - Mom is still alive, appears comfortable

My Mom is on oxygen all the time now. It will dry her up, which is a good thing.

She appears comfortable. I have her sitting up almost upright in the bed, as before when I had put her down she started to gurgle.

Her skin was cool early this morning, so I put on another comforter. She seems better now. I'm not giving her any medicine, as she doesn't swallow it, and it comes out the other side of her mouth. I am pretty sure she won't swallow, for fear of choking.

My cold is about the same. In one way it's good, because all I feel like doing is laying down. Which I can do, within earshot of Mom.

But, to add to everything, my boyfriend went to the emergency room yesterday. Long story short they might do emergency dialysis. He has been schedule to go on dialysis, but they couldn't find the veins to do the necessary surgery. They were to try again next week.

And, because I am sick, and because of my Mother, I can't be with him.

Thank goodness for cell phones.

Pretty much the same

Everything is pretty much the same. I heard my Mom cough a few times.

She is really out of it - which is good. And I don't think it's the drugs, because I am now only giving Ativan.

I think she is just worn out.

I am about the same, also.

Day 4 - Mom's still alive

Mom is still alive. She slept last night with the oxygen mask on. She really hates it, so one knows she needed it badly in order to tolerate it.

She is resting comfortably.

I, on the other hand, am sick. I have a horrible cough, with congestion in my lungs and throat.

So, I told the nurse not to stop by (she doesn't need to get sick), and probably will tell the health aide the same thing.

Later

I'm headed back to my position on the sofa, outside Mom's bedroom.

Call me when she dies....

Well, no, that's not what my sister said, but she hasn't been overly concerned.

She stopped by today for 5 minutes, literally, and it was only because she was in town.

The hospice nurse told me she had a client who's son told her that ..."Call me when he dies". And, this son lives in town.

She just couldn't believe it. He was in a very expensive facility, and she said they just pushed him into a room, all alone.

The hospice agency arranged to have nurses, health aides and chaplains to come stay with him.

And this dying stuff is messy. People always say "oh, they died peacefully in their sleep". But how do we know that? Maybe that person suffered, gasping for air for minutes or hours.

No one wants to think about it. I don't want to think about.

But I am living it.

It's messy.

Life is messy. Death is messy.

About the same...

Mom is about the same. I gave her some pills (crushed up with honey and water) around 4:00.

It was a little hard to get her to open her mouth, but we managed.

She coughed after taking the pills, but it's good that she can cough.

That's it for now.

My brother is here - I will also stay here all night.

Probably sleep on the floor in her room.

Lungs are filling up

The nurse came by. She said that Mom's lungs are filling up - probably about 2/3rds full of fluid.

We pulled her up higher in the bed, and then raised up the bed, so she could breathe easier. She did get out a cough.

She is resting comfortably. That's what is important.

The nurse stayed for about an hour. We chatted while sitting next to my Mom.

I told her stories about what we had gone through - at hospitals, nursing home, and the first night after I brought Mom home from the nursing home.

It was a funny story - we laughed.

I will write down some of these stories later - probably after Mom dies.

The nurse asked me "How have you managed it this whole time?" I replied "Well, probably because I am stubborn".

The nurse said she would come tomorrow, even though it is her day off. I want her to come, but I hate for her to work on her day off. So, I told her to come in jeans and no make-up. She doesn't live far from here, so it won't be a huge inconvenience.

And, I really like her.

It takes a very special person to be a hospice nurse.

Gurgling

Mom started gurgling again - about 3 hours after I gave her the benadryl.

I have atropine for the gurgling, but it really dries up my Mother, and makes her agitated, so I don't want to give her that.


I asked my brother to see if there was liquid benadryl at the drugstore. He came back with liquid gel caps, but when I cut one open there really wasn't much liquid.

So I dissolved the tablet benadryl in some water, and tried to give it to my Mom with an eye dropper. (I don't know why they are called eye droppers, as you use them for lots of things...but I don't know another name for it.)

The nurse will be here in a little while, and I will ask her to call the pharmacy to see if there is a prescription strength liquid benadryl. I couldn't find anything on-line, so probably not.

My brother said they had children's liquid benadryl already in spoons at the drug store. I found this rather surprising, as I thought giving benadryl to children was now considered a big no-no.

I may have him go back and get it.... but I am concerned it might not be strong enough.

Waiting for death

It's another day. It has been 3 days since my Mother ate, or had liquids. She has been getting some ice chips, and frozen ginger ale, which is mushy and basically just melts in her mouth.

The frozen ginger ale is great. I just hit upon this because she had thrown up a few weeks ago. This was after she had problems swallowing "thin liquids", so I was trying to make it like a slushy.

Now I give it to her after the medicine, as she has made a face, indicating it tastes bad. It's also just a little bit of hydration.

Later

Made it through the night..again

Just a quick posting to let everyone know that Mom is still alive.

I started giving her benedryl about every 4-6 hours, and it is knocking her out, so she slept well.

My brother stayed with her, I went to my house, so I got a full nights sleep.

Yeah!

More later

Giving ativan, but not morphine

Last night my Mother was particularly anxious. She wanted me to hold her hand, changing positions 3 and 4 times, not wanting to let go. As I had given her both morphine and ativan, I found this strange, as she should have been knocked out.

But, since drugs don't always work on her as they do most people, I thought I would experiment.

So, this morning I gave her only the ativan, not any morphine. She seemed less agitated. Then by this afternoon, the home health aide stopped by, and she even got Mom to talk! That girl is just amazing. As the nurse says "she is just a ray of sunshine".

But, my Mother did seem more alert (hello - not so many drugs), and was comfortable.

Then a few hours later she sounded like she was "wheezing", not "gurgling", and the wheezing has in the past been from allergies.

So I gave her 2 benedryl. Hour later she was knocked out, almost snoring, just like the old days.

The nurse says her oxygen level was still under 90%, her pulse if very fast, her heart is strong, but now has a slight murmur or "squishy" sound. Her temperature was 98, so that is down from yesterday.

The nurse said that in the next couple of days Mom could "rally", and ask to eat.

I guess we will cross that bridge when/if it comes.

Granny sitter is sick

The "granny sitter" phoned and said she is sick. I told her not to come. I sure don't want to catch whatever she has, let alone my Mom.

So, one of my good friends is coming to stay with me. She had offered to come last night, but I said I was OK, that maybe I would need her later.

Good thing, as I am very much looking forward to some company this afternoon.

My brother comes this evening, and he will be here tomorrow. I think another brother will come on Friday.

I don't know how long my Mother will live. She is not eating or drinking. I have given her a few ice chips, but not much.

I wouldn't think she will live much longer, but one never knows.

Mom is sleeping

I pulled the blinds and closed the door to Mom's room about 10:00. She was on the verge of sleeping, and I thought she needed some sleep.

I have been checking in on her, and I can see her chest rising and falling. She seems to be taking deep breathes.

Friends have phoned to check in. It's nice to have so many concerned friends.

I'm doing OK.

I am trying not to cry. Crying just wears me out. It doesn't make me feel better.
It makes me feel worse.

Drugs that work

It seems that the ativan works quite well. I am not so sure about the morphine.

It doesn't seem to knock her out like one would think.

So this morning, I gave Mom only the ativan. I have enough for today, but told the hospice nurse when she phoned this morning I will need more, so she is putting in an order.

She will come by this afternoon.

I am not sure if the "granny sitter" will be here this afternoon or not. She is to call me around 1:00 to let me know if she can come.

It's a nice day, so it would be good to get out of the house for a while.

Remembering that look

Monday, when my Mother couldn't breathe, the look on her face was sheer terror.

After the episode, I wondered if she would recover.

I decided, I hoped she would not.

If she recovered, it was very possible at some point she would go through that again. And, who knows... what if it had happened at night, when no one was there?

I have not slept by her bed at night. It's been 2 1/2 years. I had to take care of myself.

She use to have a "ringer" to call when she wanted something. It was a wireless doorbell, with the ringer on elastic around her wrist, and the bell near my bedroom.

This went on for about 1 1/2 years, then a year or so ago, she was ringing without realizing it. So, after a few middle of the night rings, for no reason, she lost her ringer privileges.

Since then, I would put her to bed at night, check on her around 11:00 PM or so, and then not look at her again until in the morning. Some mornings I even put off going in there. I would listen outside the door. I always thought "well, if she is dead, another half hour won't matter".

This care giving gets really tiring.

But now, I can't make light of the fact that she will die. Soon.

However, maybe not too soon. She is really hanging on.

My brother, her oldest child, comes tonight.

She is probably hanging on to see him.

Made it through the night

Mom was quite warm last night. They say that a fever is part of the body shutting down, that it's not due to a virus.

I put a cool washcloth on her forehead, and dipped cotton balls in alcohol and spread that over her arms and neck. It seemed to cool her off.

I gave her more morphine and ativan. The morphine doesn't really knock her out like I thought it would. I wonder if it doesn't really work on her, so this morning I just gave her the ativan. I will check if it seems to make a difference without the morphine.

She is comfortable. I gave her a few ice chips, although at one point she chocked a little, so I stopped.

She keeps reaching for my hand to hold.

I need to get back in there and do some hand holding.

Later

11:30 update

Mom is still alive.

I crept into her room. She is still breathing.

I will set the alarm for 2:00 AM, to give her more drugs.

Sleep is good.

Giving morphine

The hospice nurse told me not to be afraid of giving too much morphine.

Of course, that's easy to say.

But she is right.

I was a little late giving my Mom more drugs tonight, and she seemed uncomfortable.

I will be sure to give drugs earlier than later.

It's difficult to see my Mom uncomfortable. And, there is no need for that.

Learning as I go.

In one way I am relieved...

One part of me is relived the end is near. That means I can get on with my life.

I know that sounds callous, but anyone who has done this, knows what I mean. I have been doing this 2 1/2 years. When it started, I told myself "I can do this for 6 months". Then 6 months went by, and I said "I can do this for 2 years". Then 2 years went by, and I realized I had told my Mother "I will always take care of you".

Be very careful what you promise.

I look around my Mom's house. I have not wanted to start clearing out things while she was still alive. I just couldn't do it.

Even my stuff, which I could move out to my house being rehabbed, I didn't do it.
Until today. Today I took out some stuff.

My Mom has a lot of "stuff". She never got rid of anything, and even after the "estate sale" from the farm house, it's amazing how much stuff she kept.

A lot of it is really good stuff. Hard to give up. Lots of memories.

The minister came

One thing I delegated to my sister was to call the minster (who has not visited my Mother since Feb.), and also my Mother's Sunday school teacher to come visit.

They both stopped by this afternoon.

Apparently neither one stayed very long, as I was in and out this afternoon (an hour at a time), and they both came and went when I wasn't here.

That's OK. They were here for my Mom, not me.

I know she would want them to visit. It's probably best I wasn't here, as I would just cry.

Mom could never stand crying.

We are of that tough nonsense, buck it up, just do it, stock.

Our "granny sitter" is a dear

The "granny sitter" was scheduled to come today. I didn't call to cancel, as I knew she would want to see Mom.

She is such a lovely girl. She sat with my Mom the entire time she was here (unlike my siblings).

She has been reading my Mom's "travel logs" from her many mission trips overseas. It's a bit sad that she didn't get to know my Mom in her prime, but she has gotten to know her from her writings.

I called my sister this afternoon and asked if she wanted to come in tomorrow, but if not, I would ask if the "granny sitter" could come tomorrow. She has a child she takes care of, but he has the swine flu, so she is not taking care of him while he is sick, lest she also gets the flu.

Anyway, my sister declined to come in (many reasons why....), so the "granny sitter" will come tomorrow unless she gets called to do some other work.

The hospice nurse told me (in the presence of my sister), "You have to get out of the house every day". Even though my sister heard this, and even commented "you have nurses orders to get out of the house", she was quite happy to have someone else come stay with our Mom, as long as it wasn't her.

Well, people don't change. My sister was here last night, so she can tell everyone that she has been taking care of her Mother.

And that's OK. She needs to be able to say that, and I can give that to her.

I no longer feel too much resentment towards her. She is how she is. I can't change that. I just find it remarkable, and sometimes wonder if we are from the same gene pool.

This family is not into "death vigils"

My sister left this morning, with the parting words "call me if you need me". No plans on her part to show up, unless I call.

My oldest brother will come tomorrow evening, although my Mom might not make it until then.

My "crazy brother" phoned to see how Mom was doing. His comment was "it would be best if she died in her sleep". Well yes, don't we all want that. But just because someone dies at night, doesn't mean it's peaceful.

So, here I am, alone for the night. Not that I am complaining. Sometimes having others around is just more of a pain. I know what to do, and sometimes they just aggravate me.

Last night after I had given my Mom some medicine, I suggested my sister sit with her for the next hour, to see how she was. She said "an hour?" I said "OK, well, at least 15 minutes".

But, I too am not sitting by my Mother's bed every minute. I know from experience quite often they won't die if you are there.

When my husband was passing, he kept trying to get me to go into the bathroom. I said "Why?"... I didn't need to go to the bathroom.

Only later did I realize he didn't want me there when he passed.

My Mother is resting comfortably. I will check on her every hour or so.

Letting Mom go

Well, my Mom is failing.

The home health aide came today. I had to have a talk with her. Tell her that she needs to let me Mom go.

The last time my Mom took a turn, the home health aide got her to eat. I swear, my Mom didn't die then only because the home health aide wouldn't let her.

So today, when she arrived, I told her " You have to accept the fact that Mom is dying, and tell her it's OK. I've already told her it's OK for her to go to heaven, so you can't be telling her she has to eat". We laughed and cried.

I suggested she wash my Mom's hair, as I knew my Mom would enjoy it (she was sweating yesterday from her exertion). And, I knew the home health aide would feel good that she could do something for my Mom.

Working in the field of hospice is just emotionally exhausting. The home health aide is planning to get her degree in nursing, and go into another field. She has been a home health aide for almost 10 years, so it's time she progressed.

Mom's body is shutting down

My sister slept on the couch outside my Mom's bedroom last night.

I slept in my bed, but set the alarm to get up at 3:00.

At 3:00, I gave Mom some more morphine and ativan, to be sure she was comfortable the rest of the night.

I got up again around 7:00. Mom was awake, she was not having trouble breathing.

I gave her a little more morphine and ativan, and then went back to bed.

I must have slept well, as I had a dream (or nightmare) that we took Mom to the hospital, and she had recovered enough that she was eating. I say this was a nightmare, because after seeing my Mother gasp for air yesterday, I just can't imagine having her recover, to some day go through that again.

The nurse came around 11:00. She says Mom's oxygen level is around 85%, she has a fever of 104 (which apparently is normal when the body starts shutting down). She says the fever is not from an infection. There are some sounds in the left lung now. There is what they call "motteling" (bluish skin) in the hands. Apparently one sees this when the oxygen in the blood is reduced.

However, my Mom's heart is strong as a race horse, and her pulse is fast.

That is not really surprising. I know the only reason my Mother has survived all of her strokes is because she has a strong heart.

We are giving her ice chips, but that's it. She seems to somewhat know what is going on. She is not in pain, nor in distress.

That's what's important.

Status report

Mom is sleeping - although it's a drug induced sleep. She is on oxygen, and not fighting it (she hates both oxygen masks as well as the things that go in your nose).

I gave her more morphine and ativan at 9:00. I wasn't going to as she was resting, but then when I started to move her to change her diaper, she started making those horrible raspy sounds. That right there did it. It's always better to give the medicine too soon than too late, so there is no distress in between.

My sister is here so she helped me pull her up higher in the bed so when it is raised she is in a more comfortable position to breathe. I can do it myself, but it's not easy. It's so much easier with 2 people, because you can just lift her straight up by the turn sheet.

I'll be getting up every couple of hours tonight, if I get to sleep at all.

I actually think my Mom is doing better now. The problem really is getting oxygen and since she is on oxygen, that solves it. The nurse thinks my Mom's body is shutting down, but I don't really think so.

We shall see tomorrow.

Incosiderate siblings

I phoned my oldest brother who lives about 2 hours away. He came to see Mom about a month ago (after the last time I thought she would die), but hasn't made any plans to come up again.

I phoned him this afternoon to tell him what was going on. He said "Well, I could probably come up on Thursday".

I told him "Well, if it goes the way I think it might, she won't be alive by Thursday".

Then he said "I could come tomorrow, but I have a thing to do on Wednesday".

I told him I would e-mail him tonight to give him a status report.

I am tempted to tell him in the future I will just call him after she has died. You know, hate to put him out.... give him enough time to arrange his schedule to attend the funeral.

Although I don't think he is really that thoughtless, I think he just doesn't "get it".

Mom can't breathe

This morning Mom was fine. She sat up, ate breakfast, smiled at the hospice nurse around 11:00 AM.

My brother was here. I went to work on my house. I was at the hardware store when I got a phone call from him. It was 3:00. He said "Mom is gurgling".

I went straight from the hardware store to my Mom's. She was gasping for air. She needed to cough, but just couldn't get up the strength.

I phoned the hospice nurse to come. She asked if I wanted oxygen, I said yes.

Then I gave Mom some morphine an atrophine.

The nurse came. Mom was still gasping for air. The oxygen arrived, the nurse set it up. It helped. The nurse also gave Mom an ativan.

Apparently there is no air movement in the left lung (which is the side which was affected by the stroke), so that means only the top part of the right lung is working. Good news, it is clear.

The nurse says this is the beginning of Mom's body shutting down.

But, Mom has surprised us before.

However, for Mom's sake, I hope she is right.

This is no way to live.

I phoned my sister, and told her to come in tonight as someone needs to stay up with Mom.

When I had phoned her earlier to tell her the problem, she said "Do I need to come in?" I said "It's up you". Then she started to tell me what she was doing and why she couldn't come in, and I cut her off and told her I had to go as the oxygen was being delivered.

I think when she comes I will leave. If I am here all she will do is talk and talk, telling me all about her problems. LOL

I'll keep ya'll posted.

Noticing the little things

My Mom ate well this evening. Macaroni and Cheese, strawberries and ice cream.

Then she started to hick-up.

So I quit feeding her.

It seems that when she starts to hick-up, if I tried to feed her more, she will throw up.

This could be caused by her affliction of neurocariodogenic syncope.

Syncope (fainting) is one of the most common medical ailments encountered in clinical practice. Although frequently thought of as a condition with a neurological origin, it’s actually a cardiovascular problem - as such, a neurologic work-up is seldom rewarding. The two main causes of syncope are cardiac arrhythmias and neurocardiogenic (vasovagal, vasodepressor) syndromes. In both of these conditions, blood circulation to the brain is reduced, resulting in temporary loss of consciousness.

This affliction also affects bowel movements (because there is a chemical secretion required), as well as many other things.

I also noticed this evening that around my Mother's mouth it was a bluish color. Quite often when I see this, she is in the process of having a stroke.

I didn't notice anything else which would indicate a stroke, but I am acutely aware of these subtle signs.

The doctors and nurses have told me they always listen to what the caregiver says, because that person is the best one to know these signs.

And that is so true. I hope my Mom is not having a stroke, but she has had so many, it's really not a big deal anymore.

I will just have to keep an eye on her, in case she throws up, with is one of the other signs.

But overall, she seems OK.

Waiting for Mom to wake up

One of my brothers is here this weekend. That means I get to go sleep at my house (which I am rehabbing). It's nice to just be in another place once in a while. Not that it really makes a lot of difference as far as what I do (although I did go to Wal-Mart at 11:00 PM last night).

This morning I came into my Mom's house. Her bedroom door was open (I usually have it closed), and my Mother was sleeping soundly. I hate to wake her up. I can tell she is much more alert when she has had good uninterrupted sleep.

So I am checking e-mails, and reading news on-line.

Which today has made me very, very sad. The priest who married my late husband and I, was murdered yesterday. Although I am not Catholic, I really liked this priest, and went to him for some counseling many years after my husband had died. There were issues with my late husband's children, and I thought this priest would be able to assess the situation and help me out. He did. He was great. Very straight forward, no nonsense.

Anyway, I guess it's time to wake up Mom, and my brother. I warned him 2 weeks ago that I would be busy this entire weekend, except for when I come back to change Mom's diapers. Generally when he comes, he takes off quite a bit of time to do who knows what.... just anything not to be here.

It often pisses me off, but I try not to jump down his throat. Maybe I need to make out a "to do" list for him. It's just so much nagging, which I really hate to do.

Well, guess I had better get to it. Otherwise I will be wasting away the day.

Change in breathing

As I have mentioned, my Mother has been battling allergies the last few weeks.

We have gone from horrible sounding wet coughs, to gurgling, which I had finally managed to get under control by giving her benadryl.

Then on Wednesday her breathing changed. I am not sure how to describe it, other than her breathing sounded like she was in a deep sleep, (real heavy almost snoring),but she was awake. This went on for most of the day.

I had decided to have the hospice nurse come check on her Thursday, as our nurse has Friday's off, and I would just as soon have her checked before the weekend.

Although there is someone always on call on the weekend, I see no reason not to plan ahead a little bit, and make their life as easy as possible when it's not an emergency. Furthermore, I prefer to have our regular nurse, as she knows what is normal for Mom.

Also, I couldn't see on the nurses form from the Monday visit the oxygen level, although I was certain if it had changed dramatically, the nurse would have said something.

Much to my surprise, Thursday morning when I went in to wake my Mom, I couldn't hear her breathing. I couldn't even see her breathing. I could see a pulse in her neck, but no rising and falling of her chest.
I was tempted to ask "Mom, are you dead?" (our family has a rather dry sense of humor). But then, she said "I want to get up". Wow, that was weird. Almost like something out of a Halloween haunted house.

So, she was fine. All I could figure out was that it had rained the night before, so perhaps all the pollen had been washed from the air.

I called the nurse to come anyway, just to check Mom's lungs.

She came. Mom's oxygen level had been 97% on Monday. The reason it wasn't on the form is the nurse had not pressed hard enough (it's a multi-page form).

The nurse checked Mom's lungs. They are clear (in the upper part, the lower part has been a problem ever since she went on hospice). Her oxygen level was at 98%.

The nurse said she was glad I phoned, that it gave her an excuse to get out of the office. Apparently we are the only patient (for our home health aide and nurse) who is in their home. Everyone else is in a facility. So, they all kind of like to come here and hang out, chat. We have a good time.

Anyway, Mom is OK.

She is pooping also, but I will discuss that in another posting, with a warning (for those of you who do not want to read about poop).

Mom knows my name!

I don't know what happened today/tonight, but when I was getting my Mom ready for the night, she asked "What day is today?"

I was shocked, as I can barely get her to nod her head when I ask her a question.

So, I thought I would take the opportunity to ask her if she knew my name.

She nodded her head that she did. Then, I asked her what my name was.

She said it.

Amazing.

I had really thought she didn't know who anyone was these last few weeks.

Maybe it's because I decided to cut her dosage of Namenda. This was a drug given for her dementia, but because I thought she was totally out of it, what was the point?

We shall see what tomorrow brings.

No flu shot for Mom

The nurse asked me this week if I wanted Mom to have a flu shot.

Quick answer. No.

It's nice to know what my Mom has already decided and wants, so there is no second guessing.

My Mom has had a flu shot once in her life. In 2001 Mom and Dad both got flu and pneumonia shots.

That year, my Dad got pneumonia (from which he died), and my Mom got the flu (and she very rarely got sick).

Besides, my Mother hates needles.

I always find it a bit amusing when they say "X number of people die every year from the flu". Really. Well, X number of people are going to die every year from something, and if not the flu, perhaps something else.

We all die.

Somehow our society has forgotten that.

Good advice from others

The New York Times has an article on patients with Dementia, mentioning that although this is a terminal disease, too much aggressive treatment is done for the patient. They recommend patients with end stage dementia should be treated the same as those who have terminal cancer.

This comment posted after the article has been a great help to me.

It's hard for me to accept my Mother not wanting to eat. I guess I need to get over that.

I did 24/7 care of my father for 7 years. We stayed at home the entire time.
If I had to do it over again, I’d change a few things.
During the final few months, I would not encourage the loved one to eat any time they didn’t feel like it.
Alzheimers patients slowly lose their desire and ability to eat.
Just allow their natural inclination to be the measure of need for food. If they want it, feed them, but do not encourage them to eat more or more of any particular item.
This is especially true in the final 3 months.
Eventually the same will hold true for even liquids.
When they no longer want to drink, offer it, but do not encourage it.

Do not withhold anything, but allow the process to proceed even if you think it will bring a end to their life sooner.

Lastly, give more rather than less pain relief. Err on the side of too much, especially in the final weeks, days and especially hours.
I would have given even more, even too much, pain relief.
I should actually call this discomfort relief rather than pain relief.
With the Alzheimers process faster is better than slower.
Better for the patient and better for the care giver.

Let them go… That is what I learned from my years of care.

I gave Mom morphine

Tonight my Mom had her terrible cough again, despite giving her benedryl.

So finally, I decided to give her some morphine. Not much. I have no idea how it will affect her.

I also gave her some atrophine, which is suppose to dry up the secretions.
I was careful to only give her a little, as the last time, she had hallucinations for 2 days.

I don't know what else to do. All I can do is make her comfortable. She still seems somewhat "with it". I just hate for her to be miserable, and that is why we have these drugs.

Hopefully, in the next couple of weeks we will have a hard freeze. I think most of her problem is allergies, and a hard freeze will take care of that.

If that's not the culprit, then she is dying.

Well, she is dying. The question is, how soon?

This is just exhausting

Saturday morning one of my cousins called about 8:30 in the morning. He wanted to come by and see my Mom in the afternoon.

I said "great", how about 2:00 or 3:00. That worked for him.

Then I went back to bed.

I swore I didn't sleep, but the next time I looked at the clock it was noon.

Wow, what a shock.

I felt really bad about not taking care of my Mom before then, but boy did it feel good to sleep that late.

It was really nice to have a visitor. I don't know how much my Mom comprehended. I don't think much, but I managed to get her to say "hi", and "bye". She was just happy I was feeding her ice chips during our visit.

Sometimes, especially at night, I just absolutely do not want to go take care of her. But then, I just "buck up" and do it.

But, boy is it exhausting.

Tonight I thought her breathing had gotten shallow, which would be a sign she was dying.

However, on closer inspection, I think that she is just breathing better because of the allergy pills.

This could go on for much longer.

The hospice nurse comes tomorrow. She will probably give us "the talk" again, but I'll believe it when when I see it.

I know that sounds callous, but there have been so many times I thought she was dying, I just don't even get worked up about it anymore.

Now I know why Mom likes winter

My Mother has been battling allergies the last couple of weeks. I guess it's ragweed season.

I have finally started giving her generic benadryl. It dries her up so she doesn't cough, but it also makes her sleep.

Although I hate giving it to her, I think it's better than some of the medicine hospice provided.

Maybe in a couple of weeks we will have a hard freeze, and she won't have the allergy problem.

She also isn't eating much. And, I am hesitant to try and get her to eat more, because then she throws up.

She is getting really skinny.

But, she is not in pain, and is still talking, and eating ice chips.

I can at least rest assured she is getting better care than she would in a nursing home.

Every morning I just wonder if she will be alive. But, she always is.

She is one tough cookie.

Another Stroke

I guess my Mom had another stroke last Tuesday.

She threw up after the home health aide and I washed her hair. We had bought an inflatable basin designed to allow one to wash a persons hair in bed. I didn't think we had to tilt her head back to wash it, but maybe we do, a little.

Anyway, after her hair was washed she threw up. Not a whole lot, but then, I don't think there was a whole lot to throw up.

Then, later that day she seemed to have recovered, so I was trying to get some food in her.

The "granny sitter" had come at 2:00, so I had her finish up feeding Mom lunch.
I was in the bathroom, when she came in and said "she is throwing up". Sure enough, I went into the bedroom and Mom was barfing up everything she had eaten.

I use the term "barfing", because one time my Mom said "I think I'm going to barf". I thought it was pretty funny, because she is 85. I don't know if that is a current slang term or not.

Anyway, generally when she throws up it is a symptom of having a stroke.

I haven't noticed anything specific, but she certainly has lost weight. Not keeping food down is not going to help with that.

"The Talk" from the hospice nurse

Again today the hospice nurse gave me "the talk" about how Mom is probably in the process of dying.

She has lost a lot of weight (which is nothing new - I don't think she weighs that much less than she did 3 weeks ago). Her breathing is more shallow.

But, her oxygen level is at 97%. I was afraid she was getting pneumonia, but apparently not so. Not yet anyway.

The nurse and I reviewed our wishes. Well, luckily these are Mom's wishes. She made it known to us over a year ago.

No antibiotics should she get pneumonia or an infection. We have drugs to make her comfortable if needed, and they can bring out oxygen very quickly if we feel the need.

After our talk, I asked my Mom what she wanted for lunch. Home made turkey noodle soup, chili, hamburger?

Hamburger.

Mom's not checking out anytime soon.

Mom got hurt

Last week my "crazy brother" came to take care of our Mom.

He went into her bedroom to set her up, came out and said that Mom was bleeding.
Said, I must have done it, as he hadn't touched her.

Ha. What a lie.

But, I didn't say anything. The skin was laid back on her right arm. Luckily, I have been through this before, and new exactly what to do.

That is, take a swab, dip it in antibiotic ointment, pull the skin back over the gash, and then put a "non stick" piece on it, and then wrap it with gauze to hold it in place.

Over the next few days I kept checking on it, and it was sticking to the "non-stick" stuff. So I just took gauze, dabbed off the blood, so a scab could form. Then I left it open to air.

That is, until my brother is around. Then I wrap it up, and took a piece of foam and wrapped it around her arm so he couldn't do anymore damage.

At this rate, I will be wrapping her entirely in foam when he is around. LOL

Don't trust hospital staff....

.... to honor Do Not Resuscitate orders.

Friends of my Mother came for lunch today. One of the stories which was told, was about a 95 year old mutual friend of theirs who went into a coma when in the hospital.

Despite the fact that she was DNR, they revived her.

This woman's son is a medical doctor. He was not happy. She has had a good life, living by herself in her home until about a year ago. She has had a couple of strokes, so her quality of life is declining, so it's no time to want to prolong things.

I had this same problem when my Mother collapsed at the rehab hospital. She was a DNR, they had it in the back of her chart, but apparently no one pays much attention to these things.

When she was transferred to the hospital after collapsing, I kept telling the staff she was a DNR.

It's not that I wanted my Mother to die, but the thought of her dying and then her being revived (by lord only knows what means), was not what we, or she, wanted. Furthermore, she herself had initiated the DNR after my father died.

The hospital staff told me if she was a DNR she would have a blue wristband. I went to check. No such wristband.

There needs to be better procedures.

But, medical staff is taught only to save and revive people, not to let them die.

Well, it's best to just stay out of hospitals.

Just in general.

100 Posts

According to blogger, I have made 100 posts.

Boy, that's a lot of whining.

Well, here's what's been going on..

The allergy medicine seems to have done the trick. Of course, it also makes my Mother sleepy, but I would take sleepy over coughing anytime.

I feel so, so sorry for her. I swear her head has shrunk. It is just a skull with skin on it.

But, she is still eating.

She is still having trouble swallowing "thin liquids". Probably, when it's the consistency of water (hence, the term "thin"), it is going down into her lungs and not into her stomach. But, we are giving her vegetable juice and ice chips, and that seems to solve the problem.

The nurse offered some sort of thickening mixture, but when I asked if it had a taste, she said she thought it was actually condensed honey.

I know that when I am thirsty for water, I want water, not something sweet.

So, we declined.

I'll write more tomorrow. I guess I am tired of whining.

Well, I'm tired. That's for sure.

Mom is coughing again

Mom starting coughing yesterday evening.

I gave her ice chips, but that didn't seem to really help. Maybe it felt good, but it didn't stop the coughing. I am quite certain this coughing is caused by drainage from allergies. Mom has always had a problem with allergies.

Finally, after an hour or so, the cough not yet going away, I put a few drops of Atropine in her mouth. This is to dry up secretions.

I also turned her on her side, and put both Vick's Vapor rub and muscle cream on her back. Thinking, if nothing else, maybe the fumes will clear up her sinuses.

I pulled her up straighter, and told her to take a deep breath. She did this a couple of times, and was able to get out a good cough.

Then I mixed up some honey and lemon juice, and gave it to her by drops. I took a straw and dipped it in the mixture, put my finger over the end of the straw to hold the liquid in the straw, and then put it in her mouth. Guess I should try and buy and eye dropper.

My brother came last night. I asked him to check on her every so often. I called him around midnight, he said she had coughed, but not as much.

This morning she seems OK.

I just hate it when this happens. I always think "is this the end?"

I crushed up an allergy pill to give to her this morning. Perhaps that will help throughout the day.

The cough syrup doesn't seem to really do the trick.

I guess once we have the first hard freeze, this will be over. No wonder Mom has always liked winter.

Friends, New and Old

I am very lucky to have many good friends. Since I have been single for many years, and without children, my friends have sustained me.

One of the good things to come out of my Mother's illness is meeting new people. In the last 2 1/2 years there have been lots of various health care types in and out of the house. With some you make a special connection.

Our current home health aide is one of them. I think she enjoys visiting us, as much as we enjoy her visits.

On her last visit, 3 days ago, she was bemoaning the state of her love life. I gave her some unsolicited advice.

"Honey, you need to learn to be happy on your own. Don't go thinking that if only your boyfriend would commit, then you would be happy. You need to make a life plan. Figure out your short term goals, your longer term goals, and make a plan to achieve them."

Much to my surprise she arrived today all full of news. She has decided she wants to become an RN. She has already found a program in the area, which will allow a lot of the course work to be done on-line. She is absolutely psyched, and says that once she decides to do something, she sticks with it.

I swear, I had tears in my eyes as she was telling me this.

She is a 25 year old single mother of 4. I so want her to have a good life.

I am quite certain we will stay in touch over the years.

Even after Mom is gone.

I am so tired

I am just exhausted. Probably more emotionally than physically.

One of my friends e-mailed me today, with this comment, from her own experience

...on the one hand wanting her to rest in peace the other not wanting to let go. It’s difficult.

And that is so true.

Whining alert**
My sister stopped by today, for maybe 15 minutes. I had asked her if she wanted to spend some time with Mom, but she said she couldn't.

So she breezes in, kisses Mom, tells her she loves her, picks up the receipts and leaves.

Must be nice.

I would like to be able to do that. Just show up once a week. Say "I love you", and let someone else take care of her.

But, a long time ago I told my Mom "I will always take care of you".

Be careful what you promise.