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Caregivers Sharing Thread # 13

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Posted 8/6/2012 11:12 PM (GMT 0)
I just want to welcome you to the forum. Carol/Mama Lama, pretty well covered everything.

Hugs,
Connie
Posted 8/7/2012 12:37 AM (GMT 0)
Thank you all for your help. I edited my post and started a new topic.
Posted 8/7/2012 3:13 AM (GMT 0)
Thanks, LW2.

Hugs,
Connie
Posted 8/9/2012 10:21 PM (GMT 0)
Hi, Not sure if my question quite fits here but I'll take the chance.... I'm wondering about caregiving for the Caregiver. Forgive me but I have no experience helping a best buddy with a wife who seems to be nearing the end. My bud's wife was diagnosed 3 years ago with STage 4 Liver disease, Hep C and now my bud is dealing with HepaticE mightily, bravely and with love. Here's my question: what are the best things to do for a caregiver ? What kinds of things are most useful? My wife has made soup and other easily transportable supper items (careful about ingredients of course), I've offered to do any kind of household help needed... my bud and his wife have been married for 40 yrs, really private and PROUD folk and I think with latest attack of HE possibly realizing that the end could be near. Any feedback appreciated. Looking through this forum has helped me understand better what my bud is going through. He's pretty close mouthed, hasn't told many folk what he is dealing with. I do not know many medical details besides diagnosis, I only know that my bud looks exhausted, and has told me he has been up w/o sleeping most nights this last week with his wife's HE acting up. They have no insurance fyi. I want to be a good friend but don't want to intrude. Sorry to be so long here, and hope I'm not out of place. thanking you for any advice or feedback...
Posted 8/9/2012 10:52 PM (GMT 0)
Hi Frankie,
What a wonderful friend you are to ask how to help.
I have just gone through similar. My mom passed a few months ago after a long hospitalization. Dad (they were married 55 years) was at her side 12 hours a day. My brothers and I there every day after work...etc. Any help is always appreciated.
My folks were really private too...
A meal is wonderful. And you sound so thoughtful how you prepare it. Meals in disposable containers are good - no washing and returning dishes. Grocery shopping is good. I was also doing my Dad's laundry, but that might be too personal. I think as long as your friend knows your actions are out of love and not pity, the pride thing won't get in the way. I also think that a listening ear...so your friend can lean on you, cry if he needs to, express his fears, etc. is always a wonderful thing. You could offer to sit with his wife so he can get out for a bit. But, if he is like my dad, there is no way he will leave her side. My dad refused all offers, and given that mom is now gone, I know that he cherishes every minute spent with her.
God bless you for being a good friend. We all need them.

Emma
Posted 8/10/2012 12:09 AM (GMT 0)
Frankie, welcome to the forum. You are, indeed, a good friend. As a long time liver patient, I can tell you what I needed help with after transplant: Doing laundry and making the bed. Someone to make meals for me. Someone to go to the pharmacy for my meds and to the grocery store for shopping. Vacuuming. However, I live alone and needed more help than most.

Your friend's wife does not qualify for transplant if she has no insurance. But it seems to me that she would be eligible for Medicaid or Medicare and they do pay for transplants. Has he applied for these?

If you have any other questions, please feel free to ask.

Hugs,
Connie
Posted 8/10/2012 12:39 AM (GMT 0)
FrankieM WELCOME and BLESS YOU! I am a caregiver and I carry guilt for not doing enough for my brother.You are a GODSEND to your friend for doing and being what you have done.I wish I had the outside perspective that you do.Many Prayers to You and your frien d.It takes a special person to do what you do and may GOD BLESS YOU and BLESS YOU ALOT! Many prayers to your friend!

Love and Prayers,

ALisa

Posted 8/10/2012 12:42 AM (GMT 0)
Frankie,you are a true friend,I wish there were more people like you and your wife ! It seems like everyone forgets about the caregiver ! We are supposed to be the "strong" ones,We are not allowed to wallow in our own self pity ! All I ever hear is "how is Mark" ? Well what about Robin? I am tired,drained,sleep deprived,you all know what I am talking about ! I dont know when everything changed,it just crept up on me.It went from doing things together,to doing nothing at all,I feel so trapped all the time.My big outing are to go get groceries or meds ! We never do anything together anymore because Mark is to tired,or hurts,or sugar to high or low,or his hips hurt,ect.Sorry,I am cranky tonight,I just needed to vent a little here ! Thanks for listening !
Posted 8/10/2012 12:25 PM (GMT 0)
Frankie,

Anything you can do for your friend that allows him to be with his wife, and not worry about the other stuff that needs to be done would help. I agree with Emma, that I did not want to leave my husbands side when he was so ill. It is a very fine line trying to take care of yourself when you are a caretaker of someone so desparately ill.

Today would have been our 27th wedding anniversary. It has been one month since he slipped away...

I am so thankful for the time I did get to spend with him in the end. I couldn't have done it without the help of good friends

Marie

Posted 8/10/2012 4:26 PM (GMT 0)
Marie-happy anniversary. I hope you are able to find comfort in good memories today. My mom & dad's 55th anniversary was 20 days after her passing. It was another of those happy/sad days.
Keeping you in my thoughts today.
Emma
Posted 8/10/2012 7:04 PM (GMT 0)
Thanks Emma,

Today has been a bit of a rough day. Work is very quiet so too much time to be distracted. I am looking forward to getting out this evening and enjoying the sunshine. My sisters want me to come have a girls night with them. I guess I will a little later.

Wow, 55 years. Hope you and your dad are doing okay. I think of you also. I still feel like he could come walking through the door any minute with a gash somewhere that needs cleaning, or a tear in his shirt that needs mending...

or holding a broken piece of tractor, chain saw...   :-) finally. It is taking a long time to get the last months out of my head. But I am getting glimpses of the healthy Craig back. That's really all I want today.

Peace,

Marie

Posted 8/11/2012 3:32 AM (GMT 0)
Hello Connie , Emma , carol and angie ......gosh its been so long since I've been here .......hope all is well ......danelle
Posted 8/11/2012 3:37 AM (GMT 0)
How are you, Blonde/Danelle? Nice to see you here. How are things going for you?

Hugs,
Connie
Posted 8/11/2012 3:50 AM (GMT 0)
Connie things are going great , I made a post on updates ...I had trouble sleeping and was thinking I haven't been on here in sometime....how are you doing ....Danelle
Posted 8/13/2012 2:35 PM (GMT 0)
Hi all,

  Finally got a chance to get on here to see how everyone is doing.

Life here has been hectic.  I (with the help of Hubby's out of town circus friends) did a week of petting zoo contract work at the local Fair. Baby calf was a bit hit. Hubby convinced me he would be ok at home while we worked and a friend stopped in and checked on him daily.

Hubby being home from the B & B (nursing home) is going well, so far.  He has been home one month.

 I totally changed his diet from NH food..ick..to all fresh fruits and veggies...locally grown, if possible.  Also, smoothies when he doesn't feel like solid food. Cut down his meds by half..slowly, except for painkillers and will discuss that with his Doc at next appointment.

  Last night, he took a shower by himself (although I was home and watched out of the corner of my eye)  He did it all..organized toiletries, adjusted water temp, in and out of tub.  The day before he corraled our cow that got loose in a storm (looking for her calf that was at the petting zoo) and tied her to a tree until I got home.  He was very shaky when I got home, but very proud of himself.

  His friends that are here gently mention to him that a transplant might be a good idea...but he's having none of it.  He is convinced that he will "get better."  ...And he certainly is better than he was in the B & B.  Today we are all just relaxing and will take him to the lake...he has waited patiently for us all to finish working this week (14-16 hour days), so he can "HANG OUT" with his friends.  Glad the work is over and we can all relax.  I have to admit it is nice to have 3 men around that take over the "throwing hay" "fixing broken things" etc.  These guys are great.  More later...that lake beckons.

  Thinking of all you caretakers and loved ones out there and wishing you a good day.

Angie1953

 

Post Edited (Angie1953) : 8/13/2012 8:38:28 AM (GMT-6)

Posted 8/13/2012 3:59 PM (GMT 0)
Angie, it's wonderful to hear that hubby is doing so well at home. It really doesn't seem like a month that he's been home. Just wanted to say that you had sent him to the B&B because you were so totally burned out. Nothing to feel guilty about or regret. And should that happen again, no one would think badly of you if you had to place him in care again. Just remember that. It's wonderful that you are able to have him at home, but caregiving is such a difficult job, especially with working also.

Hope you all enjoy the lake!

Elle, I have a post-transplant blog on here (different thread), Parts 1 and 2, if you want to see how I've done/am doing since transplant last Oct.

Hugs,
Connie
Posted 8/15/2012 1:56 AM (GMT 0)
Angie,

Sounds like you have your hands full but are feeling some blessings! So happy that things are going well for now. Hope the lake was refreshing and you were able to relax and enjoy each other.

Nice to hear that others are planting that "transplant" seed. Never know what might stick. Nevertheless, enjoy these moments. I think of you everyday.

I can't believe it has been over a month, either. Where does the time go? I am not a caretaker anymore : ( but time is still marching on...

Mariel52
Posted 8/15/2012 4:39 AM (GMT 0)
Thanks for the support.  Hubby's friends came from Michigan to help me with our annual petting zoo for the Fair (they brought their Blue and Gold McCaw parrot), and to talk to hubby about a transplant evaluation.  His best friend jumped all over  him about "giving up" and not even fighting to try to stay alive.  Hubby broke down and admitted he is afraid to die "on the table" and his BF talked to him about him being already dead...cause he can't really do any of the things he likes to do, so why not "man up" and get evaluated.

  He wanted to blame me....but his BF put a stop to that and put it back on him.  It was some "tough love" and hard for me to hear...finally I went in the other room.  Hubby agreed to get evaluated and BF said he will come and bring his brother to do the animal care while we are gone to the transplant center.  (Sometime in Sept)  We'll see if he really goes through with it.  I am skeptical, as I think he just said what his BF wanted to hear?? But....if his BF goes with us, that will help.

  So, I hope this is a step forward.  Thanks Marie and Connie for the words of support.  It has been a rough week doing the petting zoo, but rewarding.  So many little children (...and adults) enjoyed the animals and the Big Bird (MaCaw) was the hit of the Fair.

  In response to FrankieM...I have found a program that is a Caregiver for the caregiver...Here in NE it is called Respite Care.  Every other Saturday, a lady is paid to come in for 6-8 hours and take care of hubby and clean or cook, so I can have a break.  It is a God Send for me.  The person who does this in our area just happens to be a vineyard owner/bee keeper/organic Master Gardner, so she cooks us wonderful meals that last the whole week.  This has helped so much...although Hubby keeps asking when she is going to "move in with us."  yeah

It's getting late, so will call it a night.  Hope all you caregivers and loved ones are okay tonight.  I have a little ray of hope tonight that I didn't have this morning.  Night all.

Angie1953

Posted 8/15/2012 1:01 PM (GMT 0)
I was never worried about "dying on the table." At least, had that have happened I wouldn't know it, or suffer any pain. Lying in bed dying slowly with your body failing, that's a horrible way to go.
Posted 8/15/2012 1:51 PM (GMT 0)
Angie

A ray of hope

How lovely.

Carol
Posted 8/16/2012 1:39 AM (GMT 0)
Dear Angie,

Hope your ray of hope is a full blown heat wave for you today. I am so happy that in the midst of all of this you are able to find joy in the response of the children to your wonderful animals.

I'm with your hubby on your respite helper, let her move in. Where can I get one? : )

XO Marie
Posted 8/16/2012 3:34 AM (GMT 0)
Angie, so glad his friends came down to help out and especially that his BF planted the seed...got on him about transplant. So let's hope he will follow through and at least get evaluated. I was very reluctant to get a transplant...had never thought it would come to that. It helped when Mayo told me I could change my mind all the way up to the time I got "the call." And saying no would just put me at the bottom of the waiting list, but not off it. Please let Phil know this...that his agreeing to evaluation does not mean it's written in stone that he WILL get a tp...he can always opt out later (though of course we hope he won't.)

Hugs,
Connie
Posted 8/16/2012 4:47 AM (GMT 0)
Angie-
Prayers for you and Phil.

Emma
Posted 8/19/2012 1:36 AM (GMT 0)
I have been stopping by to check out the posts.I have read some sad news and didn't reply because I was at a loss for words.Much happening but not good.Unfortunately LJ left to the drinking side of town. He is about to lose the only thing important he has left.His son.I had called and tried my best to find help.I did and I went to get him today to help one more time to bring him to some sort of food and shelter and family.It was not enough.He walked away at 7:44 pm.Many excuses but none more important than spending time with his boy.I gave it my best.Marchman Act will only keep him about 5 days.We don't have a Baker Act.Committing him I did not look into because although he is a threat to himself it is a leagal battle as is Marchman Act.Sad,mad,hurt,disappointed and heart broken for his boy.I will be okay as time goes by but his son will suffer a lifetime.I wish I had not brought him here at all.I don't know why he came.I don't know why about many things anymore where he is concerned.
I will still check in and out.I have much Thanks to you all for being here for me and my brother.I am so sorry for the losses that so many here have endured.For the sick and suffering and for those that are winning their fight,God Bless You and Keep You!!!
Love and Prayers,
Alisa
Posted 8/19/2012 3:15 AM (GMT 0)
Alisa, you made a last ditch effort, but ultimately it is up to him. We can only hope that somewhere down the line he will sincerely want help. He's just not there at this particular time. May never be. And that is another possibility that you must accept. You are putting forth more effort to get and keep him sober than he is. Do you see that? And it's not working.

Please take take of yourself and your nephew.

Hugs,
Connie
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