Making Progress

[mountainspring]

Hello to Everyone….

I’m really enjoying the quiet tonight.  I’m making some progress.  I took Mammaw to the doctor and he has ordered home health for her and I’ve contacted Medicare for an assessment.  I’m waiting for them to get back with me. This is separate from the home health that we’re privately hiring.  Hopefully, Medicare will have a nurse come in a couple times a week to check her, and maybe PT.  I don’t really think the PT will improve her situation any, but having them come in is a good idea anyway because it gives her company.  I’ve contacted three agencies and all are trying to find someone to come out to help me.  The trouble is I’m in a rural area.  But everything takes time and hopefully soon one of the agencies will find someone.  I think in a few weeks I’ll be set.

This time caring for her is different.  It’s easier in some ways and harder in others.  She sleeps more. (not today though!)  She had no nap today, but yesterday she slept all day except for when I woke her for breakfast, lunch, and dinner.  I was alarmed that she was so tired and called the non emergency rescue number to have someone come check her vitals.  Her vitals were fine, so I just let her continue to sleep.

Her legs don’t work at all and most of the time she doesn’t realize it.  Tonight she asked me if I needed her to help in the kitchen.  I’m wondering when she will realize she can’t get to the kitchen.  She can’t walk at all but if she needs to go to the bathroom she will attempt to get up on her own.  I have this neat walker that has a seat in it.  I transfer her from the bed or the couch to the walker, wheel her to the bathroom, and transfer her back to the couch.  It’s much less bulky than the wheelchair and I can just keep the wheelchair in the trunk of the car for when we go out.  I’m able to get her out for short rides when my husband is home.  He and I together can get her down the stairs, and she’s happy with a 30 minute ride. The hard part is during the week.  He’s at work of course, so she can’t get out and she gets more depressed.

She’s different.  I don’t know if I just didn’t notice when I visited her, or if she’s gotten worse just since she’s been here.  She doesn’t really carry on a conversation.  She tells me she loves me, but other than that she’s either silent or asking me the same question over and over.   She  did ask about Dad today and wanted to call him.  My father takes a nap every afternoon and I told her we should wait a couple hours and she started crying.  He ended up calling us a few minutes after that and she asked him how he was feeling.  But mostly, she just stars at the TV.  And when I put on her movies I’m not sure if she’s following them.  She wants me with her constantly, and not just in the same room, she wants me sitting by her.  I sit with her a lot but I still have to cook, clean, and spend time with my girls.  Her dementia seems really bad.  She tells me to take her home, I tell her she is home.  At first I thought she was talking about her house, but then figured out she’s talking about her childhood home.  She asks for her mama and her papa.  She asked my son a couple days ago if he lived here.  When I tell her I can’t take her to her childhood home she wants to know why I’m lying to her.  She’s accusing me of things and she hasn’t done that before.  And all of this seems weird to me because she seemed okay mentally at assisted living.  She had the dementia of course, but it was different. She begged to come to my house.  It seemed like her mind was working better.  I wonder if I’m remembering wrong.  Maybe I just couldn’t see it, I don’t know.  She’s had the dementia for a long time but she’d have spells, then she always came back before. It seems different now.  I keep waiting for her mind to return.  And I’m thinking this change seems to have happened so quick.  Maybe it’s meds.  I thought dementia was a slow progression.  And I can tell she gets frustrated with me.  Angry because I won’t let her help, but she can’t help.  And she’s right here but I miss her.  I guess that doesn’t make sense, but it’s how I’m feeling.  Another thing I’m concerned about is that her arm and leg shake occasionally, not a small shake, a fast shake.  I called the doc to see if we should come in again and he said only if it became a constant thing.

I’m doing okay.  I haven’t had any panic attacks and I’ve set up my reminders on two mailboxes to keep myself on track as far as healthy thinking goes.  My son stays with Mammaw each night so I can have a break, and my husband helps at night too.  I put her to bed about nine each night and attach her  alarm and usually find a show to watch with my husband or play on the computer with my girls.  Then I go in and sleep with her the rest of the night.  The doc gave me a prescription for a hospital bed, but I decided just to take out the single bed we put in there and put in a double bed.  If I’m going to be in there I might as well be sleeping on a bed!! We’re also setting the camera up in her room again and an intercom also.  These things just take time.  There’s a lot going on but I feel like I’m coping well. I feel more anchored somehow,  I can’t describe it, other than I feel in my heart my best is good enough, that I don’t have to figure it all out, and that somehow things will be okay. 

Dad calls me everyday to talk about his transplant.  He needs to talk and I’m glad he’s calling.  We usually get about five minutes before my mother grabs the phone from him and talks about how difficult all of this is on her.  He’s the one that has to go through the transplant.  Grrrrrrrr….   Today he called while she was getting her nails done and we had a peaceful 10 minute conversation!!

I found an online recipe  for Outback’s Aussie fries.  I went out tonight and got all the ingredients and tomorrow night my kids and I are going to eat a BIG plateful.  Going to go through our DVD’s and find one for us to watch.   Food and DVD’s bring my kids out of their rooms and into the family room.  I also got some popcorn and some parmesean and garlic seasoning to go with it, and two 2 liter cokes.  We’re going to get the pillows and afghans out, turn out all the lights, turn the DVD on, bring out the food, and pretend we’re at the movies.  It’s fun to plan fun!!

I miss reading, learning, and posting here.  I hope you all are doing well and having a good week.

[Ami]

Dear MS,
   You are a hero.
   What strikes me as I read about your grandmother is how maybe we are all like little kids inside. I remember when my grandmother( F's mother) was dying, she was calling for her Mother who died when she was a young girl. Maybe, we all are kids in adult bodies( even the biggest toughest man).
   My FIL( who I talked about on another thread) was a big, tough N. When he was sick, he was a little 'puff ball'.
   Maybe, this is a life lesson.
   MS, I hear a strength and peace in you that I have never heard before. Maybe, you are getting blessed b/c you are doing the right( and hard) thing for your grandmother..
  My love and prayers are with you.((((((((((((MS))))))))))))))))))                     Love      Ami

[Hopalong]

((((((((((((((((((((MS)))))))))))))))))))))

So much of what you're going through with mamaw is familiar to me.
You are doing a champion job.

Dementia is so hard. My mother's is up and down too. At one point she
confused me with my daughter. She can't remember things for more than
a few seconds. But she also has times when she reads and comments
very coherently about the news. It comes and goes.

It is probably Alzheimer's but so far we've been spared the anger and
paranoia.

I send you much love and strength and support. I'm glad you have such
a strong and helpful family, that you're not in this along.

love
Hops

[Certain Hope]

Dear Mountainspring,

I really think that you are an amazing woman.

That peace which surpasses all understanding... guarding your heart and mind...
it's a gift from God, I believe. You are truly blessed.

About this: " my mother grabs the phone from him and talks about how difficult all of this is on her.  He’s the one that has to go through the transplant.  Grrrrrrrr…. "

I ditto that Grrrrrrr...  My mother has been in that mode for as long as I can remember.
But you are the mature adult in the picture... who sees what needs to be done and senses the emotional needs of those involved. It is not all about you and you know it. As difficult as the situation is, you see yourself as a part of the greater - the whole - the wounded humanity all around us - and that is something your mother and my mother are unwilling to do. Unwilling because if they can not be the center of the universe, then they refuse to "be"... so they merely exist as thorns in the sides of anyone near.
Such a miserable existence it is. I see it more clearly in your story than in my own... because you are doing what I had doubted was in me to do. My mother never put it there... but I see that yours didn't either... and yet here you are, doing it. And I remember that what our mothers did not give us by their examples, we do not need to lack... if we look to God for the example, and to those who are following through in their lives as He would have us do. Thank you for your example, MS. Thank you for sharing all of this with us here.
Keeping you in prayers.

With love,
Hope

[mountainspring]

Hi Ami, Certain Hope, and Hops,

Things are looking better.  Her legs are still very very weak but we are managing.  She didn’t take any naps today and she’s eating well and in bed eating popcorn and watching a movie with my son.  We got out for the first time today without help from my husband or my son.  We went down the steps in a sitting position then slowly to the porch and into the car.  (I park the car right outside the front door)  I was thinking last night about how the PT people showed me that when she was here before and it worked great.

I’m learning so much through all of this.  Sitting with her has been trying for me, it’s just to much time for me to think.  And then I started wondering if there was a way to change that.  I know I’m happier when I’m productive….. sooooo I started with onions.  I had a bag of onions in the fridge and a couple days ago we were watching Paula’s cooking show on the TV and I thought I’m gonna chop the whole bag of onions right now.  So I did.  Chopped and put them in freezer bags for the freezer.  They won’t go bad and now when I need onions there already chopped for me.  Mammaw was so cute… Honey, how many onions do you think you need????  And then I started thinking of some more sit down activities.  I created a notebook with a weeks worth of recipes, then created the grocery list to go with it.  And today,  I had my youngest daughter bring out five things at a time from her closet, try them on, and we fill a bag for goodwill and a list of things I need to get for her before she starts school.  Finding productive things is becoming a fun challenge.  The kitchen is right next to the family room so I can cook and watch her at the same time.  I’m recording Paula’s shows, then at night writing the ingredients for the recipes I want to try.  One thing this is teaching me is that I don’t always have to be on the move to be productive.

Certain Hope - I think our mothers are the same in that way.  I’ve been lucky that I haven’t had to talk to her in the past couple days, but sometimes I really want to shake her because she really can’t see anyone but herself.  It must be frustrating for my Dad, but I have to let go of that too.  He chooses to stay with her.  I remember being torn when they moved, but I think it’s a blessing.  Being around her too much isn’t good for me and it’s real easy to limit my time with her on the phone. 

Hops… does your mothers caregiver have any activities that she does with your mom?  I’ve been trying to think of things Mammaw could do.  Sewing is out because of her wrists, she doesn’t read, she use to do crosswords but can’t do those now.  She loves going on rides and sometimes I find one or two things we need at the grocery and take her there, but her interests are so limited now.  I thought about paint by number, but I think that would be hard on her wrists too.  The only thing I’ve been able to come up with is giving her the container that holds the silverware and having her sort the forks and spoons.  I’ve even washed them extra so she could put them up again.  I wish I could find something that would keep her busy.  She does okay with folding towels too... sometimes.

Ami - I agree about us kid parts inside.  When I was visiting Mammaw at assisted living we went to my uncles house.  He has a lot of acreage and has used logs to build his grandchildren a really neat playground.  The last thing he built was this cable that went from one tree to another, and it had this  thing with a seat on it.  He made a ladder up a tree for access, and my daughter and I sat on the seat and we flew down the cable from one tree to another.  It was lots of fun.  I remember my sister telling me before my aunt died that she had asked for her mother.  And I also remember my other grandmother asking for her sister. 

Thanks for listening.   I hope you all have a great weekend.

[Ami]

Dear MS.
   Did you always have  a good relationship with your grandmother?I can see myself taking care of my grandmother who loved me so deeply and unconditionally --- but my mother--- that would be another story.
  I wish you peace,love and joy as you do a wonderful thing for your  grandmother              Love   Ami

[changing]

Mountainspring-

Your children will have such a fine legacy from you- working together, caring for the fragile members of your family, loving the rural spaces, being productive, and having fun planning to have fun. A rich inheritance, indeed.

Hugs to you,

Changing

[teartracks]

Hi MS,

Yes you are a champion! 

Seems I remember you mentioning potassium in a previous post concerning Mammaw.  Low potassium and UTI's are very common in the elderly population.  Having Mammaw eat a banana might help the confusion.  My mom has accused me of outrageous, illogical things.  It has almost become a joke between us when I say, Mama, go eat a banana.  She's still ambulatory.  The UTI's can cause malaise and fever.  After years of 'being in the business' I have to remind myself to rule out those two things as soon as possible.  One other idea.  When Mammaw asks to help in the kitchen, maybe asking her to  look through a cookbook for good dinner ideas might make her feel like she's helping.  Maybe even let her pare green beans sitting in bed?  Just a thought.
You've been such an inspiration for me.  Thank you.

tt   

[Hopalong]

Hi MS,
I lack your devotion and it shames me. If she's comfortable and content, which she does seem to be now, I tend to let her be. Right now Mom seems content with reading, and her manual dexterity has declined so much I don't think she'd enjoy any other kinds of projects.

What she loves best about her half-day caregiver is this woman's incredible heart, faith, devotion, affection, duty, cheer, laughter, and deep goodness.

I feel the same way about her. I love this woman and I will be in her debt forever.

Much love to you and your sweet Mamaw...how phenomenally graced you both are.

Hops

[Certain Hope]

Hi Mountainspring,

There's such a sense of sweetness and simplicity to read you...  I just really appreciate the way you think.
It's wonderful that you were able to get Mammaw out for a ride without help. That is quite an accomplishment... and very reassuring!
A bit of creativity in thinking and suddenly there aren't so many barriers. A lovely touch of freedom
Sounds like your kitchen is the happenin' place these days... and your entire household will appreciate that!

I wonder if there aren't some childrens' "toys" that Mammaw would enjoy.
The sort that you find in those learning-stores... 
We have a set of brightly colored blocks - flat, in geometric shapes - like mosaic tiles. With one of those tray tables, she may have fun with those! Another thing that we've all enjoyed is a magnet set, with all shapes and sizes that you can arrange on these little magnetic platforms... making people, buildings, anything...  that could be a bit more frustrating without the manual dexterity, but your children would be glad to help, I'm sure.
Also, my girls used to enjoy cutting out pictures of flowers from gardening magazines and catalogs, gluing them into collections. If Mammaw can't use the child's scissors, maybe she could glue the ones cut out by your children... or help in making some other sort of scrapbook, sorting and arranging.

Just a few thoughts   

Rain is still dripping here. My son (11) woke me last night... he hasn't done that in years. The thunder and lightning,... really wild! ... and he was frightened. I said, "Well, I can give you hugs!"... and I did. And then I heard myself saying, "You know, God knows what He's doing, right?"
And he agreed and went back to sleep (on the couch this time). 
I was gonna say, some things really are that simple. Then I realized... no, all things really are that simple, and that suits me fine.

Love to you, MS,
Hope