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Old 07-15-2011, 03:38 PM   #1
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What is still always the same.

Deb...glad the grass is cut...and glad your mom had a good day...sitting out on the porch together watching the cars go by will be one of those simple sweet memories that will be with you for life.

I left a note today to anyone and everyone to please feel free to dress mom with her things on backwards because it would be easier on her. Logic.

She slept again the whole time I was there today. She only ate a portion of her breakfast and lunch and half of her supper. These last few days are the first time the eating situation has changed.

Her aid always calls when she leaves her after supper and told me mom was
awake, though not eating much and then told me that she thought mom was feverish and had the nurse check her ...the nurse did and is now calling out hospice. So, now, what do I do...is a fever reason to rush up there? I guess I don't think so...
Deb?.. any of the rest of you who have gone through the end stage...what do you think? I am going to call up there later to see what the status is. I'll stop up there tomorrow morning to peek in on her for sure before taking my granddaughter home after a week here with us.

So on we go...from one stage to another to another to another.

Love, Meg

 
Old 07-15-2011, 05:44 PM   #2
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Re: What is still always the same.

I just talked to the nurse up there and mom has a 100.8 fever...she gave her tylenol and it hasn't done anything so she is calling hospice now and said mom was sleeping.

I have to tell you that the nurse miss-spoke and told me mom's temp was 108.. I about fainted!

So I will stay here til when or if someone calls me and tells me to come. I will see her in the morning.

My son and i were talking and he said it will be a blessed relief when her time does come and then proceeded to comfort me knowing how hard it will be. How'd I get such a great kid?

Love, Meg

 
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Old 07-15-2011, 08:10 PM   #3
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Re: What is still always the same.

Quote:
Originally Posted by meg1230 View Post
I just talked to the nurse up there and mom has a 100.8 fever...she gave her tylenol and it hasn't done anything so she is calling hospice now and said mom was sleeping.

I have to tell you that the nurse miss-spoke and told me mom's temp was 108.. I about fainted!

So I will stay here til when or if someone calls me and tells me to come. I will see her in the morning.

My son and i were talking and he said it will be a blessed relief when her time does come and then proceeded to comfort me knowing how hard it will be. How'd I get such a great kid?

Love, Meg
Meg,

Sorry to know that your Mom is sick again. I sure hope she won't suffer in hospice.

Praying for you,
Nina

 
Old 07-15-2011, 11:47 PM   #4
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Re: What is still always the same.

Meg, if it is only 100.8 I would not be too worried. That is considered low grade and not a crisis. I would have made the same decision you made and stayed home until something further developed or it was my time to go in. Know that the bodies abilities to regulate temperature will not function as well so you may see variations in her temp along the way. I bet you did about faint at the 108!!!

I figured out a long time ago that you had an amazing son He has been such a help and comfort to you. My daughter will be home Sunday afternoon for the first time since Christmas. Hopefully she will be here for about 4 days. I am looking forward to her visit

Meg, I made the comment just a few days ago that the logic train had derailed somewhere.

I will be out with Assisted Living tomorrow.... and taking Mom with me. We will be going to the yogurt shop. They have 25 flavors and 25 toppings! now that should confuse the confused! Wish me luck

Love, deb

 
Old 07-16-2011, 07:27 PM   #5
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Re: What is still always the same.

Deb...yes, your comment on LOGIC is what I was referring to.

And how did that outing go today... I hope you all enjoyed yourselves and ate plenty of good stuff. I took my granddaughters out for ice cream and they had to choose two candies to put on top of their sundae. It took quite a bit of eyeball spinning for them to come to a conclusion.

I went up to mom's this morning to check on her and her fever was gone. The weekend nurse was there..a man I really like! He said he was checking her hourly for the fever.

She was sitting up in her wheel chair, asleep, as usual, when I got there but she was smiling...even in her sleep! Sweet.

THe hospice nurse who showed up last night to check on mom called me today to tell me that he saw her last night and that she was sleeping peacefully. He prescribed ibuprofin to be given to her as needed every 6 hours if she was running a fever of anything over 100.6. He asked me how she was today and if she was awake. I told him she seemed fine though still sleeping. He asked me the last time I saw her awake. It was Tuesday. ( He sighed)
Though the aids say she is awake a bit from time to time with them. Just not much.

I have discovered something this week. I took my granddaughters to the beach and I sat on the sand watching them and when the time came to get up...I couldn't. My leg muscles have turned to mush. I had no strength!!
I suppose over the years of dealing with this disease I have forgotten my body. I had to get up on all fours and push like crazy to stand. Good grief!
Not to mention I have gained 15 pounds and can't get into my clothes.
I don't seem to be able to put together very many days of good eating habits before I attack something with carbs and sugar, which are not my friends!

I have to keep trying.

Love, Meg

Last edited by meg1230; 07-17-2011 at 05:10 AM.

 
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Old 07-16-2011, 09:44 PM   #6
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Re: What is still always the same.

This is how it goes Meg. They sit more, they sleep more, they just seem to fade away before our eyes. At least you have those sweet smiles to hang onto. I am glad her fever is gone. Probably just a glitch in the body's thermostat. I keep her in my prayers for peace and comfort... as I do you.

What you said then is what I warn others about and yet it happens to us all. We push and stress and just keep going until we do it to ourselves. Hubby walked by my bike the other day and ask me why the tires were flat. Probably because it's been almost two years since I have been on it. It's on the floating rack right where I put it when Dad took his turn for the worst. I would fly through 5 miles with no problem... now I bet I could not ride a mile. I had lost 80 pounds but put a chunk of that back on. Like you I try but then I am rushing to spend time with Mom and realize I have eaten so I pull though the drive through. I pick up Mom a milk shake and get a snack size for myself... or share hers. I bake her favorite cake and end up eating a chunk of it myself. I swear I will do better and it all starts again. I expect a thrashing from my daughter when she gets here tomorrow!

I am excited to see my daughter tomorrow. I have not seen her since she was at the cabin in May and that was just for one night. She will be here for 4 days. Tomorrow is my great niece's birthday and she will be here in time for that. Monday to Thursday she wants to spend as much time as possible with Mom... and go to my Wednesday night support group meeting as well. I wish she was closer. She is my rock and I have missed her. Yet I am so very proud of her for what she is doing. One thesis and she will have her masters! I guess I will have to eat right for the next 4 or 5 days!!!

Today was not a good day. Mom went out this morning with the LEM and a group from the locked unit. He called to tell me that Mom slept through the entire trip. When I arrived she was "playing" with her lunch. She show no recognition at all which was not usual. I finally fed her but she was lethargic and did not even show interest in her brownie. I decided not to take her out with us again but I went along with the LEM because he truly needed my help with 8 AL residents. It was a great outing. I came back to find Mom sitting on the couch. Evidently that is all she did all day... just sit... which is very unusual. I am not sure what is going on but the Hospice nurse will be back Monday. I will call and check on her tomorrow...

Love, deb

 
Old 07-18-2011, 06:28 PM   #7
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Re: What is still always the same.

Deb..I hope your mom is doing better. It is strange to watch them sedentary when they were so "active" and "feisty" for so long. But even when mom became lethargic or when she stopped walking, I at least saw the good side ...she was calm and not angst filled. And now that she is sleeping more I am so thankful that she can rest. It was just last November when I was still begging for help from doctors to give her the magic potion of pills that did the trick and gave her some blessed relief!

Yesterday she was awake a little...5 or ten minutes. But today is the first time I really got a look into her eyes. She stayed awake for an hour. She ate breakfast and I took her outside for some fresh air. It has been a week since she was awake so I took advantage of it. Her evening aid was all excited when she called me tonight to tell me she smiled at her and was awake for supper.

The hospice nurse also called me and told me that the sore on her tailbone is not getting better. She seemed concerned and said she would use a new bandage with a padded cushion in it. But the others have cleared up. Good news/bad news.

I was one day into my low carb eating when I stopped at the store to pick up a few things. I got some goodies to take up to the aids tomorrow when I go up to see mom. Well, you can guess it. I ate some of those goodies. Ok ...I ate a whole box of those goodies.
Tomorrow, back to square one.
Thank goodness I am not a drinker!!

Deb, hope you are having a great time with your daughter! ...and that you two had a great day with your mom. I wish she was closer to you too. And how wonderful...one thesis away. My daughter was working on her masters but never got that thesis done. Maybe someday. SHe joined he Peace Corp, got married and had two kids instead. What is the saying...life is what happens while your busy making other plans? Something like that.

Love, Meg

 
Old 07-18-2011, 11:35 PM   #8
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Re: What is still always the same.

According to the LEM she was out of it Saturday and Sunday... but today she was back to her usual self. My daughter and I had a long nice visit with her. I have told all that will listen... if she is up and walking then let her walk, if she is sitting then let her sit. It's a transition and I just want to get through it with as few falls as possible!

I am sorry that the one sore is not healing quickly but it is good that the others have healed up. Maybe they will come up with some new procedure or technique that will be helpful. I do know those are difficult to heal up, especially at the tailbone and the heels. Those are the pressure points. I am glad she was awake for you today and you got to see those blue eyes Add that smile and you have a good day. I too remember the days you struggled to find contentment for her. No matter what happens we can find a blessing if we look far enough.

I am sitting here laughing. My daughter was pushing the eat well today. We both did well until supper time when she said..."Mom please make a tomato pie!" It's not the tomatoes that gets you but the pie crust along with the 2 cups of mozzarella cheese, the quarter cup of Parmesan cheese, and the 3/4 cup of mayo that you put over the tomatoes. But it was sooooo good! We both went back for seconds. We see what tomorrow holds! I am just thankful that we didn't add all that other stuff during the day and managed to go to the movies tonight without a tub of popcorn. I'm looking at it not as what I do eat... but what I didn't eat!

When my daughter finished her thesis she will probably moved from where she is but land 3 hours away instead of 5. Or that's the plan. I just know that one day it will be easier for me to visit than it is now! Right now I am just enjoying her time here

Hope your Mom gives you eye contact and smiles tomorrow.. and if not you know she is content.

Love, deb

 
Old 07-19-2011, 02:33 PM   #9
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Re: What is still always the same.

Meg.

Yes,, Mom was feverish the last week. Check for UTI
Her temp had gone to 103....!! and was up and down till she passed,
Something is going on....does not sound good for her

Thank god for hospice...yes,, keep them on board , with any changes

Fever is a for sure sign of infection..
Let us know

Thinking of you
Love
Chris

 
Old 07-19-2011, 05:30 PM   #10
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Re: What is still always the same.

Chris, good to see you are back.

Mom's temp is gone. It lasted that one night....so far.

The sore on her tailbone is the most pressing problem at the moment. There is always a most pressing problem in dealing with this disease.
Her private aid called me tonight to tell me there was no bandage on it when she changed her and got her up for supper. So I called the nurse and told her and she sent up someone immediately to bandage it.

Deb, 3 hours away is much better than 5!! My oldest son is 2 1/2 hours away. Sometimes I just drive up there, see him and the grandkids and come home the same day.

The tomato pie sounds delicious....yep, we can just wallow in the good stuff.
So far today I have not eaten a box of doughnuts! Score one for me.

Mom was awake today for chunks of time but there were no smiles..not quite sure she was aware of me... she would just look at me. ..Though she did say my brother's name. I told her he was in the bathroom. She barely speaks so I asked the aids if mom still cusses at them when they dress her and get her up and they laughed and said YES! She ain't going down without a fight! Gotta laugh.

I'm glad you two had a good visit with your mom...that's good for your daughter. And yes..it is a transition from walking to not so we can only hope there are no injuries! There are at least 3 people at mom's who are going through the same thing. Everytime I see them struggle to get up I think of your mom and remember my own mom. One day she jsut stopped and never walked again.

The two grandkids who live across the street just walked in looking for ice cream...good thing they don't want any doughnuts.

Love,Meg

 
Old 07-20-2011, 04:50 PM   #11
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Re: What is still always the same.

Deb.. I went to the doctor today for my yearly check up.. ( all is good..though he said I looked tired...ya think? it's been a long long road) ..anyway, he is the one who gave mom the cocktail of drugs. He told me today that he prescribed it for a very VERY needy Alz. patient and it worked perfectly. It made me so happy to know it is being passed on. Relief for another suffering person.

Love, Meg

 
Old 07-20-2011, 07:48 PM   #12
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Re: What is still always the same.

For some reason my last post here didn't show up so here goes again

Meg, I am so glad that yet another loved one was helped. I know it was the answer for Mom and just glad somebody else is benefiting as well

Pressure sores are no fun to deal with. It is better to prevent than to heal. Yet sometimes they are almost impossible to prevent. The dark patches that herald in the pressure sores, if caught before the skin breaks down, are the best time to address them. Keeping them clean, dry, and all pressure off those points is the best treatment. Be sure they are changing Mom's position every hour and propping with pillows to keep her off her back sides. Keep a check on the hip bone areas as well. When you get them off the tail bone area the hip areas areas are vulnerable... as well as the heels. Anywhere there is a gone close to the skin!

Glad you got to see Mom's eyes and smile I know those two things get you through the day. And be grateful Mom still has the spunk to give them a bad time in the evening! Maybe she's saving up during the day

It has been great having my daughter here. Her car has been in the shop the entire time she has been here so it has just been the two of us. We have had FUN!... and spent a lot of time with Mom. I hate to see her leave tomorrow but she has to be back so she can go dig in her hole and develop her thesis Friday.

Today was an odd day with Mom. My Aunt, Dad's sister, and her son came today along with another of my cousins on my Dad's side. Mom did ok when the one cousin was there but she didn't do well when my Aunt and other cousin showed up. She was irritated and I am not sure why. Then she became angry with me for something I have no idea what! She was not a happy camper at all. They left and she was still anxious when my daughter and I left. We went out to eat, ran a few errands, and went back. She was still irritated. But within a few minutes of our arrival back in the unit she calmed down and was fine. I called tonight and she was her usual self. Who knows what that was all about because this particular aunt was her favorite family member on my Dad's side and she is one of the few that regular comes to see Mom.

I have three pairs of jeans to cut off and make into shorts for my daughter, clothes to iron for hubby, and two bracelets to make before morning... so I better get off here! We will pick up the daughter's care and pack it before we return to see Mom again tomorrow. Friday at 11 am is Mom's birthday party and I will be there. Saturday... I am sitting on my buttock!

Love, deb

 
Old 07-25-2011, 01:41 PM   #13
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Re: What is still always the same.

So....here is what is going on here.
Mom's pressure sore on her tailbone is not improving ..
She has been running a temp...today it is 100.5
We are seeing some signs of on and off congestion in her lungs possibly due to aspiration.
She is sleeping more and more.
Her eating is up and down...somedays she eats and others it is a struggle to get her to open her mouth.

Just had a long talk with the hospice nurse and together we have come to the conclusion that there is no reason to fight whatever is happening. We have had a DNR on hand for quite a while. And now we are through with antibiotics. What's the point.

So what this all means...it will be sooner than later but as always we don't know how much sooner than later.

She will not have to be moved to a hospital..no matter what happens. Hospice will also send in a round the clock care nurse once that becomes necessary. They are sending oxygen to her room for when and if that becomes necessary. In other words...they will be prepared for what is to come.

Me...am I prepared?

Love, Meg

This morning I was with her and she was better than she has been in a month...smiling so much I couldn't get her to take a drink through the smile. She was awake for most of the visit...falling asleep just before I left.

 
Old 07-25-2011, 02:15 PM   #14
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Re: What is still always the same.

Hi Meg...

It all sounds very familiar....with both parents
Mom had a very high fever 102 and very dehydrated....
I wish we had kept her at the care home also
but figured she could get better pain meds thru IV
If I had to do it all over again..I would not send her to hospital
Dad had the pressure sores also ..his last few days
very painful
With Mom...they talked me into a rounds of antibiotics
did not work...but they still wanted to do more
I refused..told them she is only here for comfort care
It does not sound good Meg
but I imagine you are as prepared as you could be
Your mom is 89,,right? My mom too.
She would have been 90 in Sept
How are her vitals? At this point, hospice will just keep her comfortable

I am praying for you that find strength to go thur this ....
It was pretty traumatic for me..to say the least
Been just 6 weeks and I still somedays..say
she cant be gone..even tho I know she is in a better place.

Hugs to you
Chris

 
Old 07-25-2011, 03:10 PM   #15
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Re: What is still always the same.

It all means exactly what you said Meg. Approaching the end, the body is not able to repair itself. Dad developed a pressure sure on his tailbone in the last few days. No matter what they did it didn't get better but they did prevent it from getting worse. The body is so busy keeping the essentials going it just doesn't have anything extra for healing. Not only that, the body is probably not even processing the antibiotics.

Also the body's ability to regulate temperature is probably malfunctioning. The pressure sore doesn't help that either. 100.5 is low grade and not atypical.

With Dad, when he didn't cooperate with eating we just let it be. Aspiration is a problem and leads to aspiration pneumonia which is very hard to treat. Yet there is not much that you can do to prevent it if they are having swallowing difficulties, unless you just don't give them anything by mouth.

As for the pain meds. Hospice uses a form of Morphine that is absorbed through the lining of the mouth. It's in a droplet form and just as effective as IV or injection. The benefit is that you don't have to deal with the tubing and needles. It also bypasses the digestive system which is probably shutting down.

So yes it all means sooner rather than later but we never know how soon. That is not for us to know. Each is a little different. Changes in breathing are a cue. Changes in the fingers and toes, foot color, color around the lips are also cues. Just enjoy that smile for as long as you can

Are you ready? I am not sure we are ever "ready" but I do believe you are prepared. That is all you can ask of yourself right now. Just know that my thoughts and prayers are with you and your Mom... for the courage and strength you will both need and for comfort for you both!

Love, deb

Last edited by Gabriel; 07-25-2011 at 03:12 PM.

 
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