An online Caregiver Resource

[Meinuk]

This is written for caregivers for the aged, but it could also be adapted for dialysis caregivers...

The links are here http://www.agingcarefl.org/caregiver/fourStages

The Four Stages of Caregiving
Introduction
One of the hardest things about being a caregiver is isolation, the sense of being alone with a difficult job to do. To help you know that you are not alone and that there are resources to help you, we have written a Caregiver Handbook that includes The Four Stages of Caregiving. We hope this online version of the The Four Stages of Caregiving makes it easier for you to identify your needs, make educated decisions, find relief, and have the best caregiving experience possible.

 
The Four Stages of Caregiving covers caregiving from beginning to heavy home care to nursing homes and end-of-life care. Each stage opens with a short overview about what to expect followed by caregiving topics appropriate for that stage. You may see yourself in one of these stages, and planning ahead may make it easier to face the next stage with confidence. Caregiving issues are explained. Pinellas and Pasco County resources of many types are described. Some state and national resources are mentioned, also.

The Four Stages of Caregiving can be read like a step-by-step instruction manual for caregiving, one stage after another, or you may want to read the overviews and then skip around, choosing a topic that interests you and saving the rest for another time. Each of the four stages is listed below with a short description of what is covered. Click on The Four Stages of Caregiving: Table of Contents to see all the topics.

Click on the links below to go to the opening page of each of The Four Stages of Caregiving. When that page comes up, an overview of what to expect will be followed by links to articles that may be helpful at that stage:

Stage One: Getting Started
Recognize the impact of caregiving on your life and family, learn how to be a caregiver, and find out more about the older person who needs care.

Stage Two: Finding Help
Accept help from family, friends, place of worship, support groups, and formal services. Learn about help for working caregivers.

Stage Three: Heavy Care
Prevent caregiver burnout and injury while providing heavy-duty care, protect your care receiver's health and safety, and consider facility care.

Stage Four: Letting Go
Resolve relationships, complete end-of-life decisions, use Hospice care, let yourself grieve, care for yourself, and have a plan for your life after caregiving has ended.

If you would like to download and print a copy of the Caregiver Handbook, it is available on the Documents and Publications page of this website. Each section can be downloaded separately as an Adobe pdf file. There is also a link to free Adobe Reader software to enable you to access the publication. (If you have an older version of the software, you may need to upgrade in order to read the files.)

[boswife]

thanks for this.  I will be looking ito it as i certainly went thrugh 'burn out '  while trying to care for my mom and hubby.  Just hubby now, and i miss my mom so much, and know that this burn out is just around the corner at times.  thanks again..

[Meinuk]

BW, you have already gone through so much.  Losing your mother on top of this latest challenge must seem at times like a double whammy.  To me, it is only "Burn Out" when it is happening, intense moments when you need to step back, gather your strength and then go back and continue the battle.  Even if it is just taking a walk or going shopping of having some time alone with friends on a regular basis, burnout need not be the last straw. It is only the last straw when it has snowballed out of control.  Try to be aware of your own feelings, and take care of yourself.

It has been 31 years since my mother died, and although I have her final year is burned into my memories, being with her while she was sick taught me that people you love get sick, and it s*cks, but you still love them. Now, 31 years later, I have the hindsight to know that as much as it hurt when she died with no dialysis and no transplant, in the end, she was finally no longer suffering.

I still feel that a child (I was 13) should never have to be primary caregiver to their parent and that is why I chose not to have children (PKD is genetic and I won that Mendelian lottery) BUT, seeing my mother through her final year made me strong enough to survive my own journey.  It made my dialysis and transplant almost a no brainier - I lived through her suffering, and there was no way I would suffer like that.  In that, she gave me the most amazing gift of all, the strength and fortitude to know that people get sick, and sometimes, they die, but it will never change how much you love them. It can even add a new dimension to that love. In my case, it was my mother's frailty that gave me strength.  It is amazing to know what love can compel us to do.

Now that I have been on both sides of the hospital bed, I can say that the role of the caretaker is hardest.  And Anyone who is shouldering that burden should remember to take care of themselves first.  Attend to your physical and mental health - it is just like when you are on an airplane.  Put on your own oxygen mask first, and then help others around you.  We need you strong and healthy, and if that means taking a step back for a moment and acknowledging your stress and burnout, well, do it.  CKD is a chronic, treatable disease - we are all in it for the long run. Caregivers, pace yourselves.

[boswife]

Thanks Meinuk, i appreciate your post very deeply.  I love being caregiver to my hubby, and towards the end of my moms life to her too. It was really tough at first as she was a changed person, and the reversed roles were really hard for me.  I came to love her for all she was, and i thank God for giving me the time to love her with all i had before it was too late.  Now as for hubby, he's amazingly helpful to me, but it's still my heart that worrys so much and is under too much stress in that realm.  Im actually scarred i'll go out in a heart attach and leave him to fend for himself and he just wont.  Im nearing 60 and been with him since i was 17 so its been awhile.  Im not afraid of being alone, im horrified of not being with him..If that makes any sence at all.  Anyway, i read till i can read no more on how to care for him better, and now, mabie i'll think a bit about carring for myself so i can care for him even better    Sounds good to me :-)

and edited to add...........  Geesh, you were just a baby..It's amazing what lessons are here for each of us to learn.  To not have a child yourself is such an unselfish act.  I dont know where i would have been with that.  I feel i would just hope that they wouldnt be effected.  Im guessing though, that 'IF' i had gone through what you did with your mother, things would have come out the same for me.  Its something too that your moms fraility gave you strength.  With my mom, her helplessness that once annoied me, became her most endearing attraction.  I could just hold her and love her and feel that more than anything i wish i  would have been there to holde her when she passed. Im guessing this was her way though.  She always protected us kids from what she thought may hurt us.  I think it was her last 'gift' to me, so im trying to accept that.  well, im crying now,  miss her, and will just thank you again for your helping me though some emotions.  Thank you from my heart.

[okarol]

Thanks Meinuk. 

[Meinuk]

  BW & Karol. 

BW, you joke about being so stressed that you'll have a heart attack, but let me tell you....  The parents of one of my best friends met when they were older, and instantly fell madly in love.  They quickly had four children and were always like teenagers, holding hands, never wanting to be away from each other.

Then he got sick.  Scary, but not life threatening.  Mary, his wife, studied, read, spoke with doctors, AND went to a CPR class to be certified just in case Stanley had "the big one".  She wanted to be there to save him.  Then one Friday morning, as she was cooking EVERYONE breakfast, she had a heart attack.  She was the only person in the house who knew how to do CPR.

She survived, and she & Stanley are still like teenagers but in their late 80's now. Her children took for granted that she was doing everything for her husband, simply because they loved each-other so much.  It was when she had a heart attack that everyone realized just how much of the burden she had been carrying, and she had been caring for all of them and not for herself.

As far as me not having children, I always thought of it as being selfish - there was a slim chance that they would be disease free, but if they had the disease I would feel guilty for the rest of my life.  Because of this I haven't maintained any long term relationships, kids it seems, were always a deal breaker when I was younger, and now, I have simply gotten used to being fairly unattached.  I had genetic counseling when I was really young, and I was well educated from day one about my disease. (I was born with enlarged PKD kidneys).  I was very well prepared for the path I am on, and I think that is why I look at every day now as a bonus.

My sister still wonders what my life would have been like if I had stayed close to home and married the boy I loved. I fell for him when we were 11, and by the time we were in our 20's, we had a long hard talk about our future, and he dropped the bomb on me "If you wanna know what you are marrying, look at her mother." Well, there is nothing like seeing two kids just start crying because they knew that they had no future, I was the strong one in that relationship, he wasn't equipped emotionally to lose me in middle age - we were both mature enough to realize it before we made a huge mistake.  I always thought that relationships ended with a huge fight and were over.  Ours just ended in silent tears.

I am lucky though. over the past 20 years, there have been children born all over the world that consider me their "other" mother. My friends have been every generous in sharing their children.  There is plenty of love to go around, and I know that there are a couple of little girls who may not share my genetics, but boy do they share my personality traits.  There is one in London that people swear that I am her birth mother because she is stubborn, stroppy and has an attitude.  Her father threatens me with "You'll be responsible for her therapy bills when she is an adult". A responsibility that I will gladly shoulder.

BW, IHD is amazing for working through emotions, (and a heck of a lot cheaper than therapy).  We can share just as much as we want to share, or we can simply sit back and read. Of course, I am partial to the ranting, because I've had some great rants on IHD that saved my friends from a truly psychotic screaming fit.  I seem to be able to type out anger, where as when I yell in person, it just seems to snowball, which is why I try to control my anger until I can get to a keyboard.

And then there are mornings like this one, when I go from remembering the years with my mother, remembering days with friends, remembering that first love and musing over just how lucky I am to have a place where I can just write about it all, and others know exactly what I am talking about.

Thanks.  And now I am going to get a third cup of coffee.  Look out world!

[looneytunes]

Wondering what life would be like if only....don't we all?  This was a great post to read, thanks Meinuk.  You are SO right, IHD is all about helping us through the rough spots, leaning on each other.