Problems

[Lucy]

Hi all,

Just thought write something now as I don't know that I'll have much time to communicate later, the way things are happening quickly around here, at least now they seem to be.

Late last night, Mom told me she felt like she was slowly dying. Said it was the Parkinson's, but couldn't get much more about how she feels.

Long story short, this morning she told my sister that she might be dead when she gets back. (They are headed to Galveston for much needed time off, so won't be far away.)

Mom's vital signs are fine as long as she has the medication to keep her BP up which she has been taking for some time now. Pulse seems fine as well.

However, it was very difficult to wake her this morning -- took a long time, and then, she was hardly awake.

Last night, she couldn't even move one of her arms at all. Her legs have been "dead" like that for a few weeks, getting progressively worse, so think it must be just traveling up her body.

That's why when she tries to speak, she can barely move her involved mouth parts, including her lips.

We were able to get her to sit up for an extended period until she finally was awake enough to put on the potty chair, and put on some dry pants. Then, I lifted her onto her wheelchair to give her a late breakfast, but she had to return to the bed.

It's strange because she can be looking right at you, WHEN she can open her eyes, that is, and still be snoring.

I hate the part about her having so much difficulty making us understand her words. Before she couldn't hear us, and lately has had a hard time reading what I write, at least with a regular ball point.

Guess I'm afraid that she needs something, and I'll not be able to figure out how to help her..make her comfortable, etc.

Her room is in no way ready to exchange this bed for a narrower one to make it easier for me to use a draw sheet to turn her on both sides.

I have bags of clothes around the room that my sister's had to take home and wash until our new one gets here. What a mess!

We're hoping the new Kenmore will be here early Monday. Has anyone had any problems with a Kenmore?
I didn't get the 3 yr warranty, but if anyone's had a bad experience, please let me know. Things are changing in terms of quality with every company.

It's a mess when we don't have a washing machine, and going to get worse. Probably the best time for this one to break down, when I think of it, IF the thing will keep working.

I'm hoping that Mom will be able to sit up to eat when she's more rested, but perhaps that's just false hope.

She's sooo stiff, that it took all the strength I had to sit her up in bed to get the meds down her.

I'm anticipating that regular fluids will start going down into her windpipe consistently very soon, so she'll probably have to go into the hospital for a g-tube very soon, if only for the fluids, but eventually, for her nutrition as a whole.

As you may imagine, my gut is in knots, but thus far, no real diarrhea.
I sent my sister and bil on to Galveston as they can come here from there as easily as from home.
I hope that she can rest, but one has to be mentally prepared for these things. Sometimes I think things happen for a reason, so perhaps these things were meant to happen on her vacation.

I don't think that jello is gluten free.
That would be an easy way to get some extra fluid down her.

I just wish that she could hear, but I can demonstrate holding my chin down and swallowing, and that helps to remind her to do that when she swallows. That closes off her throat passages to all but the esophagus, so that the fluid doesn't go down into her lungs.

Have LOTS of bananas here, so can mass the meds up with some banana if necessary.

Need to get busy.
Yours, Luce

[barbaranoela]

Luce-------my good thoughts are with your family---

I can well imagine what your gut is going thru---and U surely have to be so very strong in the face of all that needs to be done for *mom*
I dont know what else to say to U----just that we are here for U--

Give *mom* a little hug along with a smile----smiles always made my mom feel so happy~~~~~
Take care--
luv Barbara

[annie oakley]

Luce, Bless your heart my dear....I think you have to be an extremly strong person to take such good care of your Mother. There were 6 of us that took care of Daddy when he had Lung cancer, I cannot Imadgine doing by myself. My prayers are with you and your Mother. Love Oma

[JJ]

Hi Luce...hugs and prayers are on the way....you are a wonderful daughter...blessings..JJ

[Liz]

Hello Lucy. It must be extremely hard for you at the moment. I really feel for you & of course for your Mum. You can only do the best that you can for her & you seem to be doing that. I know how hard it is to have to stand by & see your mother suffer like that too.

Too bad about the washing machine. Funny how things seem to go bust just when you need them the most.

Hang in there Luce. Thoughts & prayers are with you.

Love

Liz

[Polly]

Oh Luce,

So sorry to hear about your mom's problems. But I know you are completely on top of things and will make the right decisions whenever you need to. Please try to take care of yourself as much as you can given your caregiver responsibilities. Bummer about the washing machine. I have no experience with Kenmore but I've heard they are reliable.

Love and

Polly

[Lucy]

Hi all,

Thanks for the support and well wishes.

Just thought I'd give an update since Mom wanted to lie back down a while.

Earlier, she'd requested to get up to the bathroom (too late for number 1, but at least we got number 2 where it was supposed to be). Usually, she's not incontinent during the day, just at night when she's sound asleep.

Anyway, after that, transferred her to her chair, and was able to get down some cranberry lemonaide that she LOVES, an egg, and a little bit of homemade allergen free cookie that my bil makes (delicious!). Right before that, she was able to tolerate some raspberry apple sauce. She was very careful to just bite off tiny pieces at a time of the cookie. Maybe she was afraid of choking on the crumbly stuff, so glad she was careful.

Have some good chicken here that I'd like to feed her, but she didn't want to even try it when she was up.

She sat and watched me fold A LOT of clothes on the bed and put them away. Also, watched me make up the bed. By then, she was requesting to return to bed for "two reasons," but as long as it took me to ask what the two reasons were, she's already forgotten.

Soo, while she was lying there, I folded a few more things on the other side of the bed, and all of a sudden, she slowly said, "I remember the reason I wanted to go to bed, it's the only thing that makes my head stop hurting."

Don't think she remembers even mentioning a second thing. This must be soooo totally frustrating for an intelligent woman.

Mom attributes and I think that that spot has hurt her ever since she had a bad fall a while back.

Be right back. She needs me now. L

[Matthew]

Lucy

Having gone through the same situation with my parents I hope I can give you some insights. I thought I had to take care of it all. That was not what was best for either of my parents or for me.

After the eighth time in less than a month and once again sitting in the ER at three in the morning, the ER doctor asked me to wait in a consultation room while she moved my Father to his room. The door opened after a few minutes and the patient advocate introduced herself. The next hour was one of the best I ever spent. She explained that the ER staff was as concerned about me as much as it was about my Father and went on to tell me about all the help that was available. Just to name a few their are volunteers that will come in and help with laundry, cooking and cleaning, the local visiting nurses association can help even if insurance does not cover it, their is pre hospice care, hospice care, and post hospice care. Their is no reason to have to move your mother out of your home if that is where she is most comfortable. It is possible to arrange for caring wonderful people that have lots of experience to come in and help your Mother with bodily needs , pain control, hydration, and maybe most important to give you a few moments to gather yourself so that the time that you do spend with your Mother will be truly quality time.

Don’t be as pig headed as I was, and exhaust myself to the the point that the ER staff was considering admitting me.

With twenty, twenty hindsight I realize we do this only once with each parent and their is no primer that can tell us how to do it. Every community has all kinds of help so PLEASE, Please , please get in touch with someone that can help you, your sister and your mother on all levels . I did not do it soon enough , thinking that I would loose something . Quite the contrary, when I did my Parents and I gained so much. Admitting that I needed help was not a sign of weakness but a sign of strength. A strength I gained form all the great people that had so much experiece that in their sharing made the whole dying process a transforming moment for all of us .

Concerned

Matthew

[Mars]

Luce,

Matthew has given you wonderful advice. We used Hospice and visiting nurses with my mother. They relieve you and allow you to get the much needed sleep that you need to be your best when it's your turn to take care of her.

They will cook, laundry, clean, medicate, feed, etc., etc. You can choose the times and duties you need help with. They will also stay with her while you run errands.

Love and hugs are coming your way. Remember to take care of yourself!

Also concerned,
Mars

[cludwig]

Hi Luce,

I'm thinking of you and your mom. Please take care of yourself as well.

Love,
Cristi

[starfire]

Bless you, Matthew, for sharing your experience with Luce.

Luce, I believe he has given you excellent advice. I can see myself doing what he tried to do and what you are doing and I hope I will realize when the time comes that I don't have to do it ALL by myself.

My thoughts and prayers are with you, your Mom and your Sister.

Love, Shirley

[MaggieRedwings]

Morning Luce,

My heart and prayers go out to your mom and to you too, who definitely need them at this time. Matthew has given excellent advice and I feel you sould look into additional help right away. Just think, if you should get sick and no plan in place, who can help her?

Also, had a Kenmore - the same machine - for over 20 years. It was a workhorse.

Love, Maggie

[hazel]

My washer lasted 30 years! It was a Whirlpool, but Kenmore was made by Whirlpool at that time. Probably still is.

I'm not arguing with Matthew's advice because hospice was a very great help during both my parents' final illnesses, but I will say that my only regrets are things I didn't do. Once they're gone, they're gone and there's no going back and doing it over. So, by all means, get whatever help you can, but if you feel like you should do something, do it. Your instincts will be right.

I think you are doing a wonderful job and I know your Mom is appreciative.

[janet]

Hi Luce, So sorry for you,your Mum and your Sister, accept all the help that you can is my advice, its all for the best in the end, look at the hospice system, there is help out there, your not on your own, you are giving it your best and some, rest now, and sleep the sleep of the loving daughter its what you are.
Yes good old Kenmore its a great machine, Kenmore has a good name, and a worker.
My thoughts and prayers are with you,
God Bless
Janet