Bad news for my family

Anything on your mind that isn't about WED/RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
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SquirmingSusan
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Postby SquirmingSusan » Fri Aug 29, 2008 4:53 am

Yes you did, Charlene. Thanks.
Susan

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ctravel12
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Postby ctravel12 » Fri Aug 29, 2008 1:27 pm

Susan I am glad that I did and you are more then welcome. How are you doing? Please take care of yourself.
Charlene
Taking one day at a time

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SquirmingSusan
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Postby SquirmingSusan » Sat Dec 06, 2008 5:54 am

For the last few months I've been staying with mom off and on, getting her meals, fetching things for her, and more recently helping her stand up when she's sitting down. It's been so hard and heartbreaking to watch her lose her strength to the point where she could no longer stay at home. We hired a lot of help as well. But she's just so weak. Last Monday we moved her to an inpatient hospice where she can get the care she needs. It's a lovely place with only 8 residents in a huge, modern house with a fireplace, large living room, sunroom, home-cooked meals made by volunteers, and even a whirlpool tub with a lift. One thing she's really missed is not being able to take baths, because she's been too weak to get out of the tub. (You can Google "the Pillars hospice" and see what it's like. There should be more places like this!)

It's been so hard taking care of her, when I barely have the energy to take care of myself. The other morning she wouldn't let me sleep. Every time I fell asleep, she had my daughter wake me up so I could do something for her. I was so tired, that when I was driving over to the hospice, I ran a red light. Then a little later I ran a 4-way stop, and then later got pulled over by a cop for driving with my tailgate open. :roll:

Fortunately I've been able to rest up a bit this week, while knowing that she's getting the best care possible. Wow, am I exhausted.
Susan

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Postby ViewsAskew » Sat Dec 06, 2008 7:30 am

It sounds like a lovely place. You are right, these places should be everywhere.

Thank goodness you are getting the rest you need. As a caretaker, sometimes we can't balance taking care of ourselves, even when we are needy, too. This sounds like it came just in time to keep you safe.
Ann - Take what you need, leave the rest

Managing Your RLS

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Postby Polar Bear » Sat Dec 06, 2008 5:03 pm

Susan, Take care of yourself, I have been where you are, when the home care for my mother was no longer possible, (Alzeimers). Sadly she is no longer with us.

On reflection I don't know how I did it all. I think at the time the ability comes from within, from some deep source.

Time to take a little time for yourself.
Betty
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ctravel12
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Postby ctravel12 » Sat Dec 06, 2008 9:57 pm

Oh Susan I am so sorry to hear what is happening in your life. I know it is hard to see your mom the way she is.

I am so glad that you did not get into a serious accident. Please take care of yourself. I know that is easier said then done.

I always say a prayer for all of the rls family and will add an extra one for your mom.
Charlene

Taking one day at a time

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SquirmingSusan
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Postby SquirmingSusan » Sun Dec 07, 2008 3:16 am

Thanks Ann, Betty, and Charlene. I so appreciate your support and thoughts and prayers. My mom is quite comfortable in her new place. Every time we visit her I'm so impressed with the level of care and the beauty of the facility. And now that I've gotten the word out to her friends where she is, there are lots of people to keep her company. By the time my family got there today, she had already had 3 sets of visitors before us. It's so nice not to have to carry that load by myself. Kind of like having this great RLS support forum. :)
Susan

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Postby Sojourner » Sun Dec 07, 2008 3:17 am

SS, . I lived with my sister in her hospice room before she left us. How lucky your mom is to have your love and sacrifice. Sincerest best wishes, M.
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Postby mikeyvon » Sun Dec 07, 2008 4:42 am

Hey Susan,

This is Mike...Haven't talked to ya for a while.

By the way, my mom is 86 and went into a nursing home about a year ago and her health is declining just like your mom. Fortunately my sister (a good person like you) gives so much of herself in keeping her quality of life as good as anyone possibly could. And your right...it's hard to see them slip away. But on the more cheerfull side, I couldn't help but laugh like hell about you getting pulled over for for having your tail gate down. Shame on you. I never thought of you as a truck lady. Keep on truckin woman! Ha- Ha-Ha.

Mike

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Postby becat » Sun Dec 07, 2008 5:49 am

Susan I'm sorry to hear the latest news, but wanted to say that your ok and no guilt for needing and getting the help. Do not beat yourself up for that.

Hospice is full of wonderful people. I am happy your found such a great place for her. I love that there are only 8 people, that is a huge plus.

Yeah a bath is something special for sure. I love them, think most of us women do, they just relax everything. Good find my dear.

I can only offer my prayers and support. I've been there.

Take good care of you, you have more than that going on, I know. However, without you well and ready and able, it will just seem all too big.
It certainly is stressful enough not to be so out of whack yourself.

So mommy Lynne say get some rest and give your body and mind a break soon.

Lynne

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pedrime
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Postby pedrime » Mon Dec 08, 2008 4:23 pm

I am so sorry, Susan. You'll be in my heart.

Meg

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Postby moonlight » Mon Dec 08, 2008 11:07 pm

Susan I feel for you and your familly I realy do , my mother in law has reached a stage in her illness where a nursing home is becoming reality...but she wants independance which is rapidly declining.....it is such a hard time...like yourself I dont now how my hubby copes with her , me and my son.
I am glad the hospice is good , she will get the best care .....please remember to take care of your self...that is good news about your daughter now she'l get the help she needs.

much love and affection
moonlight xxx
sleep is not only a dream

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SquirmingSusan
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Postby SquirmingSusan » Tue Dec 09, 2008 7:38 am

Thanks all - Mark, Mike, Lynne, Meg, and Moonlight. I feel blessed to have your support.

Mike - I don't drive a truck, usually, although I drive my dh's truck a lot. But I was driving my minivan with the hatch up. Way up. :lol: And as the officer said, "there's a whole house in there. It looks suspicious."

We've had a weird couple of days with mom. I'm sure everyone who has a mom will relate. She's always on our case about losing weight (she has an obsession with thinness). Also, her house is always in perfect shape, and our clutter problem drives her crazy. Last night she went on a tirade about how we were eating out again, and we'll never lose weight like that, and we should cook at home, yada yada. Then she said: "You look like blimps." After that she berated us for not keeping our house clean. We all just looked at each other and rolled our eyes.

I asked her if that was all she had to worry about these days. She said she just lies there in bed and her brain just spins. I guess that's understandable... I asked her if she could get past our looks and our mess at home, and appreciate us for the caring, quality people that we are! She muttered a half-hearted "yeah."

When we left, I announced: "You look like blimps." And we all burst out laughing. It wasn't totally out of character for her to comment on our overweight status (she has an obsession, remember), but to be so mean about it. Just wow. We talked about it a bit, and talked about how that's how she expresses her love for us; by being worried about things that we don't worry about; and chalked it all up to the stress of dying.

Today my daughter and I went to visit, and the decline between yesterday and today was huge. She's catheterized because she's too weak to get to the bathroom. She has pain - 8 of 10 on the pain scale. And she was throwing up all day. She was on morphine for the pain and haldol for the nausea (yes, haldol!), and was pretty out of it.

She's definitely on the downhill slide now. :cry: The nurse gave us copies of the book "Gone from my sight" which describes the process of dying. Both my daughter and I were sobbing all the way home.

I don't know why I wrote all this. If you've managed to stay with me, thanks. Wow, what a trip this all is.
Susan

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Postby ViewsAskew » Tue Dec 09, 2008 8:04 am

I was captured by your ability to see why your mom was calling you a blimp. That's hard to do when you are in the midst of someone saying something that can be interpreted as hurtful.

I was also chuckling, shaking my head, and feeling your sorrow, somewhat simultaneously.

Have you started the book? I am afraid I'd not be able to get far into it because I couldn't see the pages through the tears. Soon, I'd be doing something else because that just doesn't sound like fun... Does the book seem like it's going to be helpful? Some of us want to know this stuff...some of us do not. And others, I guess like me, aren't really built to handle the pain of it all even though we'd like to know.
Ann - Take what you need, leave the rest



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moonlight
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Postby moonlight » Tue Dec 09, 2008 6:54 pm

(((((((((( Susan and family ))))))))

Look after each other
love
moonlight xxx
sleep is not only a dream


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