Editor’s note: We couldn’t think of a better way to conclude 30 Days of Caregiving than hearing from family caregivers themselves. We asked family caregivers from FCA’s online support group to write and share their insights, and they generously shared their experiences below. We also took the liberty of putting their posts into wordle- a website that takes your text and makes it into art. The more often a word appears, the larger that word will appear. Enjoy!
You will need the patience of a saint, the mind of a doctor, and the strength of Hercules — to take care of your loved one.
-Ron in Newhall
Thought #1: You cannot even begin to imagine what caregiving is like until you do it. Nothing can prepare you.
Thought #2: Caregiving has totally ruined the relationship between my father and I. I think my biggest regret is going to be that this experience is going to taint all my memories of my father.
Thought #3: There is a life after caregiving?
Of all the challenges facing caregivers, I believe the gift of time is the most important. When I got into the “silent job of caregiving”, I had no idea how all encompassing and exhausting it would be. When you are asked to take care of yourself, they mean it, even five blessed minutes a day. ASK for help, farm out things, let some things go, take people up on their offers or even if they don’t offer, ask for help. You will be more effective for your loved ones, besides.
As I journey through this “caregiving” valley, I’ve learned through many caregiving classes, seminars & Link2Care discussions that taking care of myself is of the utmost importance and caregiving is something I do, not who I am. Who I am is alive and well and is still smiling in spite of what is happening around me. There are things I have learned on this caregiving journey that I would not have learned otherwise, so, I am grateful for this opportunity to be a full-time caregiver to my mom.
This site has been a life saver and a place to gain friends, family, info, advice, laughter, and LOVE! The knowledgeable folks I’ve come across here have offered unconditional support because they’ve all “been there and done that” and SURVIVED! List server is AWESOME in staying on the side lines and only stepping in when someone gets “out of control” which fortunately rarely happens. THANK you and THANK GOD!
-Clovia, prayer warrior
The most challenging aspect of spousal caregiving has been becoming my Husband’s parent and guardian. The challenge entered in handling the physical demands and emotional aspects of two roles. I endure daily the knowledge that my husband isn’t all there anymore, my sounding board is gone, my laugh buddy disappeared, my soul mate turned into my child.
-Leeanne Curts, Lindsay, CA
I joined Caregivers because I was depressed and didn’t know where to turn. I found wonderful support, caring people and an extended family. In my opinion, every caregiver should have the opportunity to join this group as the support and advice is invaluable. As an example of how close we become once we have joined, there are former caregivers who are still with us
because we all become part of the family. My life would not be the same without Caregivers.
-Sigrid, Gulf Coast of Alabama
Although I am fairly new to the group, I have learned more in the past month here than all my independent research over the last 4 years. It is comforting & strengthening to know that all caregivers survive by faith, humor and fellowship with their peers. My husband has began telling everyone that when things get rough, the tough start emailing! This wonderful group of people have a wealth of knowledge, the power of prayer & the gift of humor that will carry all of us through good times & bumpy roads.
–Kat from Ohio
As the mother of a special needs child and wife of a husband with a rare neurological disease, I fell into being a caregiver. I find I am a single mom to our son and a housemate to my husband as his disease progresses and he is bed bound. I am thankful every day for the on-line support group as these wonderful people have saved my sanity, literally. Being able to vent and discuss a difficult situation and knowing I will not be judged, it is priceless.
-Shai, Northern California
It has been a long road but one I will cherish forever. Having the privilege to help my Mother through her last years as a long distance caregiver then to help out in home care Hospice for the last month of her life. I feel I was put on this earth to serve and that is what I did as a daughter.
I found it very helpful to journal I only did this the last month of her life but it gave me great insight.
I have learned how important it is to help others and now that I am no longer care-giving I hope to volunteer as Hospice volunteer so family may get out and see the light of day for a few hours something I learned I needed. I also have found my best friends in life are also care-givers themselves. Care-givers are Terrific people.
If there was one thing i could give another caregiver, rite now, i would give them the address to this caregiver support group here online. I have done it many times since i found this group as i feel that’s the best thing i can do for them.
How being a caregiver has impacted on my life (family and personal) is that no matter how strong willed or how much the caregiver (CG) wants the best for their loved one (LO), sooner or later there will be times when resentment creeps in by ourselves and our family and friends, and we will know what they were talking about in the beginning when they were saying we were crazy for taking this on—this won’t change us because some say caregivers are ‘caregivers’ by nature of their DNA, but it definitely gives us a higher insight into things — and hopefully when it is time for tough decisions to be made reference our own elderly years, we took steps to lighten any mental or physical load that anyone involved in our care (direct or long-distance advocate) faces. Being politically correct, and always saying or doing the right things to our LO’s, or to our family and friends, is fine — but sometimes, it is therapeutic to have a safe place go to have your ‘feelings’ validated as needed which will allow the CG to continue on in their role of caregiving.
This group means to me: difference between sanity and insanity, during the ups and downs of caregiving, because the advice and support given by this group far surpasses (but doesn’t replace) much of that given by professionals and it also arms the caregiver with additional info when it comes time to attend appointments for and about loved one (LO).
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you.” (Jeremiah 29:11-120)
-Sierra, caregiver MIL(86), end stage dementia
My husband is now in his 10th year of the disease process – from “mild cognitive impairment to a diagnosis of Alzheimer’s 5 years ago”. Just prior to his Alzheimer’s diagnosis, I was diagnosed with breast cancer, followed by a mastectomy, and chemotherapy. I had never been a believer in support groups. Now, I would suggest to any caregiver who can do so to join one. For the last 4 1/2 years I have faithfully attended 3 meetings a month, and I doubt there is not one of us in attendance who does not believe at least one other individual there is much worse off than they. It is a humbling experience – to see and meet and know those other caregivers is its own gift.
Note: If you click on the pictures, it will launch a larger image in a separate window.