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9 years ago  ::  Nov 15, 2008 - 7:04PM #1
grammytammie
Posts: 2
Hi there, im a 40'ish yo woman that has taken the role as fulltime caregiver of my father.  There is alot of baggage with this, but I will forgo that for now. 

Im finding myself feeling so alone.  I am the only child able to do this.  My sister is in the military and cannot do anything but offer support over the phone and fly in for a few days here or there. 

Right now, I have admitted I need help.  I need some repite help or something.   The type of help is what we are trying to figure out.   Dad doesn't want to go on, he is tired of fighting.  He had major heart surgery in Aug and things aren't getting much better.  All he says is that he wishes there was a pill he could take.   

I talked with his case manager about this, and she suggested I look into Hospice.  I talked with my sister, and she agreed.  I talked with his primary care physician, and he also agrees.

I want dad to make this decision,  Im not making it for him.  I just can't.   He has a living will, and he has a DNR. That much we took care of after we lost mom to cancer in 12/06 and I was left with making decisions that I wasn't comfortable making, but have come to terms with them finally.

Im just feeling really lost right now. 

Thanks for listening,
Tam
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9 years ago  ::  Nov 16, 2008 - 11:33PM #2
noflonightingale
Posts: 2
There are so many decisions I never imagined I'd be making at only 27 years old.   That's how old I was when my then 56 year old husband suffered a stroke.  We were about to move into our new home, and he had a job waiting for him in California.  It turned both our lives upside down. 

Keep your faith.  Listen to your gut feelings-your 1st instinct is usually the correct one.  Don't let anyone make you feel guilty or feed into your self-doubt.  Ask lots and lots of questions to anyone who will listen and keep your eyes open for information about your predicament.  Persist, survive, prosper, advocate for who you love.   

And please don't ever forget that you are not alone.  There is always someone who understands.  The trick is opening up and reaching out to others like you for support.  And for Pete's sake, ask for help! 

Caregiving is a marathon, not a sprint.  It is an ongoing process of learning and character development.  You can do this, you will do this.  I repeat this-YOU ARE NOT ALONE.
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9 years ago  ::  Nov 16, 2008 - 11:39PM #3
noflonightingale
Posts: 2
I am the primary caregiver for my husband, a stroke survivor.  We both have interest in owning a cat, and I feel it would be beneficial for husband's recovery.   But there are some obstacles.  I fear that our caregivers will balk at our cat and refuse to come to our house.  I want some guidance on what might be a prudent approach to owning a cat when other caregivers are in the mix.  I must have these caregivers at least 5 days a week, as I also work a full-time job.  Where to begin?
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9 years ago  ::  Dec 02, 2008 - 12:53PM #4
sierra_elegance
Posts: 1
Tammy,

I totally understand where you're coming from.  I took care of my grandparents until they passed away as I was the only one available to do so.  It's not easy.  And you really do need to get some respite help, even if it's only for an hour or two every couple of days.  Hospice is one of the most caring and loving group of people I've ever met.  My grandfather accepted their help when he finally realized that I needed them.  They made sure to explain that just because they were called in didn't mean that Gramps was going to die and that as soon as he was able to do more and felt he no longer needed them, they would bow out.  It didn't happen that way but it made it easier for him to accept their help with his end of life experience as they call it.  And it helped my grandmother accept it as well.  My grandfather was with Hospice for two months but by the time we brought them in, he was like your father...wishing someone would just give him a pill.  He had congestive heart failure and got to where he couldn't get out of bed and he hated it with a passion.  I lived with them for 16 months before he left and Gram went 16 months after him. 

My best wishes to you and please talk with your dad about you needing some help before you too need a caregiver.  That's the problem he needs to see...if you don't take care of you, you won't be able to give him your very best and you'll become ill from the neglect.  It may be just what he needs to pull himself out of himself.  And have his doctor explain the same to him.  You should bring your sister in to talk with him as well.  Share the concerns about you with him, doing so gently and lovingly.  Don't be afraid to let him know how hard it is for you sometimes.  And believe me, walking that fine line between being the child and being the caregiver is not easy.  Emphasize the love you have for him, the fact that you want to be at your very best for him and that the only way for this to happen is for you to have some personal time.

One of the best things you have right now is the ability to access the Internet.  If it wasn't for that I would have been totally isolated from the world.  You also might check into taking some online classes at your local college.  The interaction there will keep your mind active as well as help you make new friends. 

I would like you to know that I registered on this site just so I could write to you.  My heart feels for you and I hope that I may have given you some ray of light to help guide you in making decisions that are not easy and should not be all yours to make.  I may not always check in here but please feel free to email me at sierra_elegance@yahoo.com

My prayers are with you.  You will find the strength you need.  Diana
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9 years ago  ::  Dec 02, 2008 - 4:29PM #5
jachit
Posts: 1
Dear Tammie,
Just read your blog. Caretaking can be one of the most demanding roles of all. I am a hospice social worker, therefore, your story touched my heart. I would suggest that you approach hospice for your father, and, do so in a manner which reflects the positive roles of hospice and their staff. One of these may be that if father has medicare, there is not charge to him or his family. You sound as if you, also, need that added care that your father would receive, as well as, the services of counselors and social workers. Most hospices will also pay for a few days in the hospital or nursing facility to enable the caregiver some respite, or caregiver strain. There are other ways for you to get relief, which your hospice of choice may be able to advise you of these concerns, as well.
I am convinced that all those who tackle the enormous task of caregiving will, someday, be rewarded. God Bless You!
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9 years ago  ::  Dec 02, 2008 - 7:43PM #6
gypsyflowerchild
Posts: 2
I am also new at this caregiver stuff too. My aunt Laura is 92 and she had a double stroke last may. Thank god it was only affected her vision center, so she is legeal blind, but it kicked in demention with short term memory lost. She helped my mom raise us. Since my dad died so young, leaving her with 5 kids.
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9 years ago  ::  Dec 02, 2008 - 7:43PM #7
gypsyflowerchild
Posts: 2
I am also new at this caregiver stuff too. My aunt Laura is 92 and she had a double stroke last may. Thank god it was only affected her vision center, so she is legeal blind, but it kicked in demention with short term memory lost. She helped my mom raise us. Since my dad died so young, leaving her with 5 kids.
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9 years ago  ::  Dec 03, 2008 - 1:56PM #8
atlantis
Posts: 4
Dear Tam,

I applaud your courage by reaching out for support. Being alone (not just feeling alone) makes every decision seem harder, whether as a single parent or caregiver. From my experience of having to making critical, life saving choices, after my two sons were in a fatal car accident, just about put me over the edge. While my oldest son (then 16) was in the  Trauma ICU the doctor looked at me and said flatly, "It's your decision. You either choose to save the leg or save the child". I don't know if I could have made the decision  to sign a DNR consent form. My son survived but he's now a double amputee. It doesn't make it any easier that your Dad has lived a long life. The difficult journey and grief are just as real. Hospice is so wonderful. They will offer your Pop gentle support and compassion and you will also have loving support in the months ahead. God be with you.
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9 years ago  ::  Dec 03, 2008 - 8:45PM #9
specialmemaw
Posts: 1
Dear TAm:  I can feel your pain.  My dad passed on in 4/07 from cancer and mom had breast cancer in 9/08.  Then has another cancer in 10/05 that kept her in the hospital until 1/06.  I left my job and straight to the hospital every day.  When she came home, I became her main caregiver as I had been since I returned in 9/07 after dad passed.  My older brother helped me a lot but unfortunetly, he suddenly passed away will be 2 years ago the 30th of this month.  My younger brother is in the military and has a parapalegic wife.  He tries but his time is limited. My sister lives with my mother but is not much help at all.  Mom sits in her chair all day and now I am worried she will get sick again. 

If your dad is so sick that he has no quality of life, Hospice is a good place to start.  I will be praying for you.
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