Support for my sister, Dad's caregiver

[TerryJ2]

I got a late night call--luckily, I missed it--from my sister, K. Dad was taken to the ER last night. He was unresponsive but is doing much better now. He is in the cardiac unit. He is 90 and has Alzheimer's. He fell this yr but had minor surgery on his hip, rehabbed and is doing very well ... no residual pain like cousin P has. I think M is moving him out of assisted living to a more high intensive place. I hope she can get with-a social wkr and do it straight from the hospital.
I was panicking because husband is out of town, and I was going to call someone to take care of difficult child, but I do not have to fly out today (I called the hospital and talked with-a nurse) so all is well for now. I can wait until husband gets home Sunday.
In the meantime, my sister is dealing with-her son, who is now on two kinds of chemo for his colon issues, still awaiting an MRI to definitely diagnosis Crohn's. He is back at school, a Jr, but has a special pass to leave for the bathroom anytime, anywhere. M was worried she'd have to hire a tutor. I think he has finished the antibiotics and the prednisone--good thing, because he kept running a fever and having hallucinations. Not fun dealing with-a 6' ft HS jr at 2 a.m. who thinks there are things in the house that aren't there.
So, I'm asking for strength for my sister, above all. Somehow, it will work out with-my dad and with-her son. If Dad was in ICU, I wasn't sure which way to go with-asking for help ... he is 90 and maybe we should let go. Then again, he's like a cat and springs back when you least expect it.
I feel so badly for my nephew. His summer was essentially stolen from him. But we've heard from many middle aged people that HS is the worst, and then the disease evens out and you can have a normal life.
Thank you all!

 

[TeDo]

Prayers heading her way. Sounds like she really does have her hands full.

 

[keista]

If Dad was in ICU, I wasn't sure which way to go with-asking for help

Prayers and strength to ALL of you to get through this difficult time regardless of the outcome.

 

[DDD]

Oh my goodness she really has too much on her plate. I know this sounds crass but does she have a living will giving her the power to make life ending decisions for your Dad. Since we are in our seventies we got that taken care of a couple of years ago but scads of people end up in crisis with-o a medical directive for guidance. I'm sending supportive prayers for all of you. DDD

 

[TerryJ2]

Yes, I think she does have a living will. I have not seen it but she went through this with-Mom, and all of that paperwork was fine. Although Mom was alert and chose to wear a blue bracelet at the end.
Thank you all.

 

[gcvmom]

Prayers for them all!

Good news about Crohn's (if that's what it is) or even its cousin, Ulcerative Colitis, there are many helpful drugs on the market now that weren't there 10 years ago. My difficult child 1 is fortunate in that he's been able to stick to Imuran (an immune suppressant) to maintain remission these past few years and he's been able to catch up on growth (and now that we resolved the (ahem) bladder issue, he feels GREAT). There are more powerful drugs with trickier side effects, but at least there are options that many sufferers did not used to have. There has been a LOT of progress made due to genetic research for these autoimmune diseases, and thanks to the scientific community realizing that SHARING data leads to faster progress we've learned a lot more in a shorter period of time.

Hopefully your sister has gone to the CCFA web site -- they have a lot of helpful information about inflammatory bowel diseases, and patient resources. There are some centers in the country that are better at dealing with these diseases and if she can afford to go to one (if he's not responding to treatment) she should look into them. CCFA also lets you search for clinical trials by state or zip code, so that's something else to consider.

There's also a great parent support board (similar to this one) she should check out: http://ibdsupport.dragonpack.com/

Hope your dad stabilizes quickly and can be moved to a safer environment. Your sister has a lot on her plate right now.

 

[JJJ]

Yes, I think she does have a living will. I have not seen it but she went through this with-Mom, and all of that paperwork was fine. Although Mom was alert and chose to wear a blue bracelet at the end.
Thank you all.

Prayers for her and you and your dad.

The blue braclet comment reminds me of a relative who passed over the summer. He had slipped into a coma and his wife signed a dnr; then he woke up and wanted to know why he wasn't being allowed to eat DinNeR. No one wanted to be one to explain it to him. Luckily, he had some lucid moments and (typical of him) cracked up laughing at it and then signed his own DNR. Both he and his wife passed within 3 weeks of each other and it was great to have one last memory of him laughing at life.

I hope you have many memories of your parents that keep you laughing through the tears.

 

[KTMom91]

Sending hugs and strength, Terry.

 

[TerryJ2]

Thank you all.
And thank you for the link. I'll forward it to her. I'm hoping to talk to her within the hour.
I spoke with-another sister, who said that Dad's heart is still very slow, and were he a younger man, he would have a pacemaker installed. But at 90, with-Alzheimer's, that's not doable. So I think we're doing nothing. But I'll find out for sure in a little while.

 

[Hound dog]

Saying prayers for all of you.

 

[Liahona]

 

[Marcie Mac]

Good thoughts and healing wishes being sent your way

Marcie

 

[TerryJ2]

Thank you! I have gotten a text from my sister, and one msg, but haven't spoken yet. I bet she's asleep! I am waiting for the hospital nurse to call me back. I think they are giving him a blood transfusion to give him some ooomph. It should last a month of two.
We are living from crisis to crisis. But Dad is warm, happy, and eating well so wth, isn't that what it's all about?

 

[Estherfromjerusalem]

Just to give your sister an encouraging story about Crohns, here's my sister's story: She has Crohns. In her early twenties she had very very major surgery that saved her life. After her third child was born she once again had to have major surgery. Since then she took some sort of preventive medication for about 10 years, and today she is more or less cured. I know it sounds incredible. She has to be careful not to eat certain foods such as nuts, coconut, corn etc., and also she steers clear of milk products. She was warned that another surgery would mean a colostomy, which really scared her, because the two surgeries removed parts of her intestines. But she is living a completely normal and very very active life, and she is going to be 69 years old next month.

So I should imagine that the prognosis for him is good, especially since my sister's difficult times were 30 and 40 years ago, and medicine has progressed so much since then. My sister is a walking advertisement for the wonders of modern medicine, and I hope the same will go for your sister's son.

Love, Esther

 

[TerryJ2]

Thank you, Esther!
I will tell her.

Turns out she was not asleep. She stayed in the room and was awakened every hr along with-him. She finally told the nurses to back off and quit monitoring him because he was so agitated. He didn't know what was going on, wrapped the blood IV cord around his neck by accident, blah blah blah and it took forever to get him calmed down. Apparently the nurses I spoke with had just come on shift and everything was calm by then.

She said she was too burned out to make any decisions about moving Dad, so today he is back at the assisted living place. And I hope my sister got some sleep last night.
She was certain he was dead when the assist lvng nurse called her in. They shook him and called to him and he was ashen. But he's like a cat. Hasn't used up his nine lives yet!
He got two pints (blood, not whiskey, although I'm sure he would have preferred the alcohol!) and a regular IV for dehydration and although he is very very thin, he's almost as good as new.
This should last a month or two or three. I'm thinking this should happen again, oh, about Christmastime.
I'm thinking about flying up on the 28th so my sister can take a trip to give a presentation.