Bad news for my family

Anything on your mind that isn't about 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.
SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Bad news for my family

Post by SquirmingSusan »

My mom, who is 89 years old, and who had a Whipple procedure done about 8 years ago for a pancreatic tumor is in the hospital with gastric bleeding and getting blood transfusions. She has a bleeding ulcer, and her CAT scan shows that the pancreatic tumor is back. This is very similar to what Randy Pausch had, except he was a lot younger and didn't get an 8 year break.

Mom has always been in great health, except for a major surgery here and there that she always downplayed so that we wouldn't worry. A few weeks ago in the ER when she told the doctor that she had had a Whipple 8 years ago I was stunned. She had told us that it was just a little abdominal surgery for a precancerous mass. Sure Mom!

She told us today she doesn't want to do chemo or radiation just to gain some time, and then be sick all the time. We can't blame her for that. She's had an incredible life. But my heart is breaking and I just don't want to say goodbye yet.

We'll be getting information on Monday about hospice care, and will try to keep her in her home as long as possible. When things get bad, I'll probably be staying there with her a lot since my brother has a son with MD who won't live much longer as well, and he needs to be home with him as much as possible.

With all that will be happening in the near future, I'll be scarce around here. Those of you who pray, please keep us in your prayers. I love you all.
Susan

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

SS, Sorry to hear about mum. Truly, a time for which there are no words but only tender and warm thoughts.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

ViewsAskew
Moderator
Posts: 16181
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Like Mark, I have no words. My thoughts are with you and your family. You have been through such a rough time in the last few years.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

moonlight
Posts: 672
Joined: Fri Nov 02, 2007 12:35 pm
Location: scotland

Post by moonlight »

Susan
I'm sending my love and kind thoughts to you and your familly

hugs
moonlight xxx
sleep is not only a dream

Polar Bear
Moderator
Posts: 7920
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Post by Polar Bear »

Susan, what can I say. My love and thoughts are with you,
Know that your mum loves you, as you love her, and that she will always be with you.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Walking After Midnight
Posts: 649
Joined: Sun Aug 21, 2005 5:23 am
Location: Portage, Indiana
Contact:

Post by Walking After Midnight »

Warm thoughts and prayers to you and yours Susan.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Prayers to fill the moon for you and the family.

Lynne

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

Post by ctravel12 »

Oh Susan will definitely keep you in my prayers and ask God to keep you strong.
Charlene
Taking one day at a time

SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

Thanks Mark, Ann, Jacquie, Betty, Randy, Lynne, and Charlene. Your support means a lot to me. My mom is doing great right now, but we have no idea how long that will last. But while she's feeling well enough we plan on taking her out and about and having some fun. I'll be talking with the hospice nurse tomorrow and will ask about getting a wheelchair. Then we can take her to the park, walk around the little lake we lived near for so long, maybe go to the conservatory or zoo. Rebecca has been staying with her for a couple nights, and we'll probably be switching off, especially as things get worse with my mom. We'll see if we can talk my 16-year-old son into staying once in a while. Rebecca is in the process of getting officially diagnosed with Aspergers, and we're finally getting somewhere with getting treatment for her sensory integration disorder. It doesn't help that my mom's phone rings all the time. Mom has an unbelievable number of friends.

I just wish I felt better and had some energy. I feel asleep 4 times today after I got up, but the doc still say no to Provigil. I do have some prescription diet pills that are mild stimulants, and she said to go ahead and take those, but they make me headachy. Stupid sleep disorder.

Thanks for your kind thoughts and prayers. It means a lot to me.
Susan

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

Post by ctravel12 »

Susan I am glad that your mom is doing great now. You are doing the right thing in doing fun things with her now. Your mom just knowing that her family loves her is the best medicine in the world.

Please keep us updated. God will keep you strong and she will be in my prayers along with you and your family.
Charlene
Taking one day at a time

Polar Bear
Moderator
Posts: 7920
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Post by Polar Bear »

Heartfelt best wishes to you and your extended family.

love xx
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

Susan you are a good daughter. Don't beat yourself up over things that can't be helped. You do have to take care of yourself even though all your concern is for your mother. She sounds like a wonderful person and I'm so glad you will get to spend some good times with her.

Call on some of her friends to help (if your mother allows it) because I know from experience that most people really want to do something to help. It helps them and it helps you. There is so little friends can do at a time like this anyway.

My prayers are with you. Be kind to yourself and let us know how things are going.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

Thanks again, Charlene and PB. And thanks for your words of support, Ruby. I'm not really beating myself up, just wishing things were different and I had more energy to deal with things. Every now and again I get a glimpse of the happy, friendly, bubbly person I was before I get sick. Now I just walk around in a daze and can't think of how to even talk to people.

I hate this expression, but "it is what it is." I'm going to be struggling to be there and help my mom as her health declines, while I'm running on half of my cylinders. But she's on the hospice program now and she'll have a case nurse, a social worker to help with emotional adjustment for all of us, a nursing assistant to help with little things like making lunch, volunteers to help in various ways, medical equipment when she needs it, a handicapped card for her car, and a 24 hour call line if she has concerns about what's going on. And when she needs someone to stay over night with her, there are 4 of us who can sleep there. Except my sleep schedule is a bit off...

But right now she's feeling well and wants to be independent. She has a lot of friends in her neighborhood and they do things together and watch out for each other.

It's kind of unreal to think of her getting sicker and sicker, and not coming out of it.
Susan

ViewsAskew
Moderator
Posts: 16181
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Susan, I think you articulated what is so frustrating about all of this. The idea of who we were versus who we now are.

It sounds like everything has been done that can be to make sure your mom is taken care of. The declining part of some illnesses, such as your mom's, has to be one of the hardest parts; not only do you have to lose her, but you have to watch it happen slowly.

Concentrating on making the most out of those moments certainly sounds like what we're supposed to do, but I'd be a fool if I said something trite about it. Even if we can position it in some positive way, it will still be hard and hurt.

I hope your sleep, pain, and RLS are all cooperating at least some of the time.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

Post by ctravel12 »

Susan I know it is hard to see your mom's health decline but try to remember the good times. Hospice is a wonderful organization and will be good for both your mom and your family.

I think of the good times that I had with my mom as I lost her in 2003 but she had a good life and lived until she was 93.

Hey I told hubby there is longevity in my family so I will be
around for a long time. He is probably saying Oh Dear God please help me I just wanted to bring a smile to your face and hope that I did.
Charlene
Taking one day at a time

Post Reply