Day 30: Family Caregivers Share Their Wisdom

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!

Caregiver Wisdom

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?

-Kathy

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.

-Jane, CA

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.

-Maria Olivo

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.

-Sally

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.

-TREE

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.

-Joan B

Note: If you click on the pictures, it will launch a larger image in a separate window.

12 comments to Day 30: Family Caregivers Share Their Wisdom

  • Diane G.

    I too belong to above caregiver group. I have been for 8 years now. I took care of my MIL, my Mom and Stepdad, now my husband and myself. It is often a caregiver becomes the caregivee from not taking good care of them selves. We get so wrapped up in our caring for our LO that we just think, I”ll take care of me when I have time. You must make time or you will be in the shape I and many other caregivers are in. Needing to have a caregiver ourselves. This has been an invaluable life experience to me. I truly believe i would have lost my sanity without this group. I have recommended it to alot of people and they usually think that because it’s online it will not help them. This is not true. This is the greatest help with unlimited resources you will every find. Because of there true life experiences they have the answers or will find the answers for you. Please don’t hesitate to turn to our help.

  • Thank you Diane, your comment about the group’s value (of hearing from people who have been through it before) was also echoed by several other members. You are all a really valuable resource to each other!

  • Enormous gratitude to the caregiving support group for their inspiring and heartwarming thoughts and quotes. For those who are caring for a loved one and looking for a bit of extra support, they might want to check out Lotsa Helping Hands, a free, private community web site to organize family and friends during times of need. Family caregivers can get respite and relief from tapping into the many offers of help they receive from their circle of friends and family. The service includes an intuitive group calendar for scheduling meals, rides and other daily activities as well as community sections (well wishes, blogs, photos) that provide emotional support to the family. http://www.lotsahelpinghands.com/

  • I loved this quote!

    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.

    Great article and thank you!

  • It’s like being on a deserted Island with ships going by in all directions and I am crying out for help, but the ships just keep passing me by.
    You never know what its like to have a loved one with TBI and to be their caregiver until you experience it for yourself. You will need God to be able to take care of your loved one and survive. God has shown me what true love means. Love does what needs to be done regardless of how you feel.

  • Janet Conte

    Hello,
    I’m new to this web site. I need help finding the right care for my Mom who has recently suffered a stroke. Is in home care the best or would assisted living care be better for her? She is having trouble with walking & does not always remember where she is. It’s very sad for her & for her family. We could use some sound advise on how best to care for our Mom.
    Thanks, Janet Conte
    San Marcos tx

  • Hello Janet,
    Thank you for your posting. The best place for her care will depend on a number of issues, including your ability to be a caregiver/keep her in the home (assuming she lives with you), whether or not you want home care or assisted living, the cost of all of these services, and what is available in your area.

    Several suggestions:

    1) Review our “Hiring in Home Help” Fact Sheet

    2) This may sound obvious, but even sitting down and making a mini “care plan” can be helpful in making these decisions. For example, what are the pros and cons with the current situation? How does the current situation work for you financially, (and otherwise) and six months from now, and a year from now? Next, what are your other options? Option 1 might be that you have home health care come into the home. What are the pros/cons, financial implications of that option? Option 2 might be assisted living. What are the pros/cons, financial implications of that option?

    3) You can also call our national information and referral line and we can help walk you through some of your questions as well. (800) 445-8106).

    4) One other great resource is our Family Care Navigator that lists all of the largest programs in each state: Navigator

    5) Finally, this is our Fact Sheet on Stroke that was recently updated: Stroke Fact Sheet.

    Thank you for writing,
    Sean Coffey
    Policy Specialist at Family Caregiver Alliance

  • Pat Leigh Mullins

    Hi. I have been taking care of my mom for three years. She is 86 yrs. old. She has dementia. She uses a walker. Some days she walks o.k. and some days she is really weak. She now has trouble saying her words. It is so sad to see her go down hill. I only hope I can keep her in good health and be there for her. Thanks, Leigh

  • Thank you Pat- She is lucky to have you! We hope you have some support in what you’re doing too.
    Sean Coffey, Policy Speciliast

  • Judi

    My mom has moderate dementia. She refuses to take her medicine. She is out of control and is not ready for a home, I have hepl 2 days a week but my providers cannot make her take her meds as well, any solutions, thanks

  • Hello Judi,
    Thank you for writing, we’re emailing you a response off-line.
    Thank you,
    Sean Coffey, Policy Specialist

  • donna bragg

    This reply is for the daughter that has med issue with her mom…change focus off medication taking…make game how fast she can take pills..make a pill slurry which grinds all the med into a powder form and put in mistake or other treat…g

Leave a Reply

 

 

You can use these HTML tags

<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>