Surviving as a caretaker... (parent, disabled, friend, family)

[Mrs. Lindo]

I have been caring for my mom for close to six years, and the only break that I have had was when mom was in the hospital.

[CArizona]

HomesickFloridian...Thanks for your caring posts. Sorry about all you went through when your wife was ill.

[HomesickFloridian]

Originally Posted by Mrs. Lindo

I have been caring for my mom for close to six years, and the only break that I have had was when mom was in the hospital.

Lucky you, every time my wife went in the hospital the stress increased and it got far more complicated..

[HomesickFloridian]

Lindo, respect for taking that comment as it was meant and not taking it personally ...

[Wayland Woman]

Originally Posted by CArizona

eyewrist...Thanks for taking the time to share so much with me! I am an only child and I don't have any family here except for my son. (And he is recovering from the brain tumor.) My other son passed away a few years ago. Don't have much of a support network but I will go down your list to see what fits my situation. Thanks a lot!

I am so sorry for your losses and for your son's situation. I can sure identify with you regarding the shell shock of going from one caregiver situation with your husband to another with your son. When my dad died and my caregiver role with him ended I only had a few months before my husband's care became my full-time job. It's very draining emotionally.

Have you looked for an online support forum that specializes in brain traumas? I don't think I would have gotten through the first few years after my husband's stroke without an online support group.

Also, have you looked into adult daycare. The one we have in my town picks up their clients and delivers them back home and the pay is on a sliding scale. I have a friend who uses one twice a week to give her a break and chance to run errands and another friend who just uses adult daycare a couple times a month. It gives them something to look forward to and both their spouses enjoy their days away from home. If you have a brain trauma unit in town, call and ask them if there is a local support group for families. Hospital social workers or patient liaisons often have information on local support groups as well.

For me, one of the most important lessons I learned as a caregiver was to live in the moment. Sounds simplistic, I know, but caregivers tend to worry so much about the future that they make themselves sick with stress and loneliness. We all need to learn to recognize and enjoy the little moments when we CAN take time just for ourselves, even if it's just a five or ten minute break to sit in the sun.

[CArizona]

Wayland Woman...So sorry that you didn't have much time to recover and recuperate after your Dad passed away before your husband needed your care too...It's taken me awhile but I'm finally starting to come out of all of the traumas...It can feel like ongoing trauma and "drama." Don't you think? There's no telling what might "happen" around the next corner. It's like PTSD!...Anyway thanks for posting and caring. Hope you will have a long period of "calm" in your life for awhile. Me too! (And everyone!)

[SSEPTEMBERMOON]

What a wonderful strong woman you are, I thought I responded to you yesterday but I guess I didn't submit my reply.

Please join Memory People on Facebook tell them Leanne B. invited you,
you will meet the most loving, caring, supportive people who will help you with anything you ask or just be your friend.
I can't say I know what you are going through, but I can say you are not alone.
Go to that site and read, say what you want. No one will judge you, I'll bet you could help a lot of people with your experience.

I am Leanne and I take care of Tim (my brother-in-law) He has early Dementia We don't know how long he's had it, couple of years maybe? Tim does not have long to live and is going down fast, I never know what is next.
I do know~~ I love him and I will care for him for as long as I can.
Good luck to you and Please go to Facebook and find the memory people page (about 1900 members) You will be glad you did
Leanne B. <3

[CArizona]

SSEPTEMBERMOON...Leanne...Thanks for the nice post. Sorry about your brother-in-law. I'm glad you have so much support on Facebook.

[tulani]

Originally Posted by CArizona

Thanks! Normally I take pride in understanding myself and my feelings and emotions...But I can sure be "whacko" and "all over the map" emotionally now! My husband knew how to help me but he's gone now...He was my anchor! I never felt weird or crazy when he was right by my side!...It's always been hard for me to ask others for help. And I don't want to be a burden on other people...I do ok most of the time but some days have been rough...I decided to do more writing and posting to let things come out...Thanks for caring! My goodness! I sure have a lot of insecurities at times. More than I realized! Most people view me as a "super strong" person! Maybe this has been a problem because everyone thinks I can handle anything all by myself! And I can! But I do have some "off days!"

Writing always seem to help. When there is no one around to talk to, sit and write your feelings. Sometimes it is easier to see things clearer if they are in writing.

Originally Posted by mistygrl092

If you are in the Phoenix metro area I'd like to recommend Hospice of the Valley. I think it's www.hov.org. I've gone to their grief groups and this is a wonderful organization. They also have an online forum. DM me if you'd like more information. I am sorry for all the sadness you have had to endure. BTW, they will even offer a few one on one counseling sessions to you. My dad died out of state and was in hospice and yet they did this for me.

I second that! Hospice of the Valley is a terrific bunch of people!
I lost my mom to cancer in 2003 and my son and I would have been lost without the Hospice nurses. They were such a help.

Originally Posted by CArizona

I've sure been through a lot (and been through many different phases) since I started this thread last year...The thread got "buried" for quite awhile and I was surprised that it "popped-up" again...I definitely had to "grow-up fast" during this past year and I've changed a lot. I've gotten used to "going it alone" most of all and I've became stronger than I ever could have imagined last year or the year before when my husband passed away...My son went through 2 brain tumor surgeries within a 5-month period. It took him quite awhile to regain his speech after his last surgery in November...He's in a rehab facility now and needs special care but his mind is strong and he speaks much better now and he has his sense of humor back!...The doctors say the tumor could grow back at any time. But we both try to stay positive and hopeful!

I didn't realize at first that this was an old thread, but am glad I decided to stop and read it. I am happy that your son is getting better. Sounds like he has a terrific mom on his side.

***
I've enjoyed this thread immensely. I cared for my mom for less than 4 months while she battled and lost to lung cancer. Each and every suggestion on this page is helpful in some way to some one and I just want to thank everyone for their contributions. (I am saving some of these posts for future references.)

When I started reading this thread I was thinking I wanted to tell you to write - and write some more. I'm a writer - a poet. I write and think everyone would benefit from just simply sitting down and writing down their feelings and thoughts. I kept journals for years through my own dark days and then through caring for my mom. I destroyed them afterwards because the pain was in those pages. The internal pain of losing a loved one never goes away, but by releasing my words, I was free to move on.

I put together a book of my poetry called Golden Flowers: a poetic journey through the seasons of grief. This poem is just one that I wanted to share in this thread.
I know each of you will understand.

Cyclone

The thorn tree in the whirlwind
pierces straight into my heart
Each prick is like a dagger
that is tearing me apart

As I spin in mass confusion
wondering where I'm going to land
I'm lost within the cyclone
as I try to understand

To spirit pass our loved ones
through the tunnel spinning 'round
They leave us with our sorrow
in a twister off the ground

I reach beyond the whirlwind
seeking shelter from the storm
Looking for safe haven
and a soul to keep me warm

And there outside the cyclone
a wondrous sight to see
The world beyond is steady
my soul can now break free

copyright 2003

[looking4answers12]

CArizona,

We've run into eachother in other forums here on CD. I haven't read the whole thread yet, but it's always a pleasure to bump into you, even when discussion difficult topics.

How old is your son? I can only somewhat imagine how difficult things have been for you. I have been caring for my father (from a small distance), my daughter suffers from chronic headache and my husband had surger for trigeminal neuralgia about two years ago.

We were fortunate that my daughter does not have a brain tumor, but I have a bit of an understanding of the fear associated with that possiblity. They have not been able to cure here headache, so she just lives with it.

My father lives around the corner from me, but he has full time caregivers and he is cared for 24/7 with a LOT of supervision from myself and my sister.

It seems that I'm the "healthy" one that gets to be there for my family members when they are suffering through their various health problems. Some days are easier than others. For me, I just take it one day at a time. One crisis at a time. I try to appreciate the calm periods in between crisis. I thank God for the positives and ask for help, stregnth and guidance when facing the more difficult times.

I do what I can, and try to say no to some things, when I have reached my limit. When I can't do any more and I know there is someone else who are able to step it up, I ask for help. With my Dad, I make sure that my siblings know when their help is necessary. With my daughter, I was the person who was there for her most when she needed me, but I did have her father to help with various things. When my husband was in the hospital, I just made sure that I did what I could, hoped the hospital staff was competent (they were) and made sure our children did what they were capable of doing to either help me with things around the house, or take care of themselves.

If you don't have any support system at all, you may want to see if you can get some type of help through social services.