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I'd like to put together some information to help new family caregivers. Here are a few questions for everyone:

What would have helped you most in your role as caregiver?
What would you have changed to make your "job" easier?
What advice/tips would you give to a new family caregiver?

Thanks in advance. I really appreciate your input.


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Third Sister
What would have helped me most as a caregiver:

A parent who expected to get old and realized it could get expensive, and who therefore continued working long enough to accrue a reasonable pension benefit and saved her inheritances instead of retiring at 58 on a shoestring and spending every cent that came through her hands;

A parent who maintained her relationships with her grown children and took an interest in her grandchildren so that they would be more likely to be concerned about her and willing to step up to help when help was needed;

A parent who was willing to reduce her expectations about her lifestyle once she became unable to maintain her lifestyle by her own efforts, instead of expecting to continue every amenity of her independent life using other people's energy and resources.  For example, willing to give up the private home she can't afford to maintain, the car she can't gas up or take for maintenance, the dog she can't walk or take to the vet without help, etc. etc.

A parent who did not feel entitled to take over my life because I was her "preferred" provider or, as she puts it, her "assisted living".
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Thank you for such a succinct and spot-on summary to Mike Gamble's request. I think you describe the situation for many of us.
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A.-to 3rd sis
That's why I found it best not to enable my parents, especially mother and to say no and keep boundaries to ridiculous requests.
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1.  What would have helped most is if my mother would accept she cannot maintain her life and home the way she could when she was younger and if she would stop expecting the rest of the world (i.e. anyone who is involved in her caretaking) to read her mind and do all those things for her "the way she would have done it", so she can still live the way she thinks she should.  If she would accept change, change in her physical and mental abilities, change in her needs, change in other's abilities to help it would make things so much easier.
2.  I would have set boundaries early on, making it clear I will do what needs doing, but I will not give up my own limited time on earth to be her personal slave to fulfill all her personal dreams that she didn't accomplish herself and lose out on my own opportunities in the process.
3.   Do set boundaries, don't expect appreciation from the person you are caring for.  No matter how bad your childhood was, don't expect that by becoming their zombie slave you will be able repair any damage from past relationships with your parent.  DO take your experiences as a caregiver and take that knowledge to plan for a smoother transition for yourself before you get where they are now.
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things to help the care givers
1 more info about veterans  benefits
2 more info on medical equipment for care of the love one and how to get it
3 know your love ones wishes for the end of life
4 keep a records of your love ones medical treatment so no one can claim you did not do every thing for your love one

5 i kept a record of every pill she took daily and when she passed i took that days to the hospital with me so that they knew what she had and the time she took them

these are some of the things i learn in taking care of my mother who pass away on Oct 5 2013
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I'm sorry to hear of your mother's passing.  You took such good care of her.  Nobody could have done better.  You are the daughter everyone wants to have.
I wish you peace and rest now.  You have earned both.
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You have my sincerest condolences. I know you were a caring and dear daughter to your mother, she was a fortunate woman to have you.
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Sometimes I wonder to myself why I keep going back.

But most of the time I know the answer. Or at least I tell myself the following things.

It's the right thing to do. It's the humane thing to do. Everybody makes mistakes. Nobody deserves to be abandoned or neglected. He was probably damaged by his own parents which is why he is the way he is.
He has his occasional moments when he is not so horrible... When he almost redeems himself.
Sometimes he does show gratitude. I keep hoping that one day he will "get it".
I just can't give up on him.

But, of course, I have my days when it feels like I am fooling myself and it is time to give up.
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Anyone else? Please share your thoughts.
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My first caregiving experience was ten years ago, when I cared for my elderly dad who had cancer. Since I didn't know what I was getting into, I made so many mistakes. I did too much myself, I worried too much about my parents feelings (as opposed to doing what was truly in their best interests), I tried to maintain things so they could pretend they weren't aging and declining, etc.

I am now involved in the caregiving of five elderly relatives (in varying degrees), and things are much different from ten years ago.  In case anyone is curious, one of my relatives is in a nursing home, one is in assisted living, one is home on hospice, one is living in her own home resisting all outside assistance (and is probably on a destructive course that I cannot do anything about) , and one is living pretty independently.  What I learned from my mistakes the first time around is this:

1)  If your parent has a personality disorder or any other condition that prevents them from being rational, find outside resources FOR YOU right at the start.  Call your local mental health agency and involve as many people as you can in helping you devise a care plan.  Sometimes you will learn that you have no power to do anything, but just having outside resources can be useful in putting your situation on record.  I recently involved my local mental health agency to discuss my mother's behavior and they gave me several options on how to best care for her.  Even when we came to roadblocks, they were very validating and understanding about what I was dealing with.  I have found the regular medical system to be less supportive, but the mental health community in my area seems to understand the dynamics of having a mentally ill parent.  I wish I had done this years ago. 
2) If your parent has a personality disorder or any other condition that prevents them from being rational, be careful about becoming their full-time, one on one caregiver.  It may be best to get them outside help early on.  They will resist, scream, put up obstacles, threaten and rage, but having outside resources is often the best way to meet their needs.  If you can set this up early before they need intensive care, it can prevent you from having everything dumped on your lap during an emergency.
3) If you choose to become a caregiver, don't do it alone.   I have a relative who is absolutely lovely and reasonable and kind, but her needs far exceed the capacity of even a few people.  Right now, we have about 20 people involved in her care.  We didn't do it this way with my dad, and we burned out quickly.  I've learned from watching the person coordinating my relative's care that it's helpful to have a large calendar broken out by shifts and whenever someone asks "What can I do", direct them to a task.  On my relative's wall, there is a list of time slots and jobs, and we all take turns.  I will admit that this works best when the elder is ill and actually has friends, since people tend to offer help, but there's no shame in actively soliciting the elder's (or your) friends, neighbors, church groups and social circles to see if anyone can spare a few hours. 
4)  Give up the expectation that you will be appreciated, thanked, or treated reasonably.  Just clearly have your limits in your head about what you are able to do and then do that.  
5) Give up the expectation that your elder will be happy with what you do.  What many of them want is to be young and independent again and to resist is the natural flow of aging.  You cannot give them that.
6)  If your motivation for doing the job is guilt or fear or some other unhealthy force, get some help for yourself. 
7) If your elder is sick, designate someone not involved in the direct care to handle PR.  The last thing you need is energy drain from constant calls or emails asking about the elder's condition.
8)  Have an emotional support system.  You will need if for the times you are mistreated, frustrated, and overwhelmed.  If you don't have one, you may want to think twice about becoming a caregiver.
9)  It is extremely easy to get swept into the tide and lose your own life.  That serves no one.

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Hi Splotchy! As always, great advice. Thanks for your input.
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Thank you for having this site.  It's helped me more times than I can count!
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Caregiving is a special job that gives us the opportunity to serve those who served us. The elderly are wonderful people with lots of stories and wonderful hearts.
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