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LorrieB Posted November 2016

What have you learned that you would like to communicate to other caregivers?

More than once, this website (and all you wonderful contributors) has saved me from devolving into a puddle of tears and despair. I want to thank ALL of you for continuing to help each other, and for being the amazing people you are.... I have found it increasingly therapeutic to write about my experiences. The lessons I'm learning may be helpful to others, too. Please feel free to follow the blog UNFORGETTABLE, at unforgettable.live. I encourage you all to participate, as well, in terms of sharing and commenting. I'm happy to write your stories for you. Communication is essential to our collective wellbeing.

Windyridge Dec 2016
A couple things:

If elders are still competent, or like my folks, borderline competent, you can only do as much as they will allow. Pick your battles. If they don't mind the 40 year old sofa why fight about it.

Get prepared. About half the questions on this site are from folks who are in OMG, WHAT DO I DO NOW mode. They don't have POA, don't know if there's a will, trust, insurance, bank accounts. I was there also about 5 years ago but fortunately was able to get the legal and financial stuff done before before my dads dementia took over.

Know when to intervene. Ending the Driving, in home help, move to a facility, this is all hard stuff but at some point it has to be done. And it can get ugly, they hate you, cry and fight. Be strong and get it done when the time comes. I would rather my folks hate me than see them die in a house fire or run the car half way through Walmart.

Gershun Nov 2016
One thing that I learned was if you decide to take on the role of caregiver do it cause you want to and because you love the person you are taking care of. Don't expect any thx. from your siblings. Don't expect anyone to throw you a party or have a parade in your honor. Do it from that unselfish place in your heart that just knows it is the right thing to do.

Another thing, if your Mother, Father or whoever you are taking care of was not a social person who liked to get involved in groups or activities when they were able-bodied, don't expect them to suddenly get like that cause you are worried they aren't mingling in the care home. Remember that if they have some form of dementia that you need to be in their world cause they have forgotten how to thrive in yours.

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Rainmom Nov 2016
LorrieB - it was a close one and if it weren't for this site and the generous, wise people here - I'd likely have tire tracks across my butt. Mom passed away three months ago. Try as I might, letting go of the hurt and anger is proving tougher than I expected but I also miss her more than I expected to. Such is the tattered fabric of many mother/daughter relationships, I guess.

anonymous281963 Nov 2016
It is important to understand what caregiving is NOT.
That it is NOT something that should or can be forced on you out of fear, obligation, and guilt by someone else. That it is NOT something 'they' or anyone can pay you to do out of default because there is no one else.

To do so can kill you, kill your spirit, create anger and resentment, leave one in shock asking why am I doing this? It is the little things that take so much out of you over time. Some are left with only the words of what their siblings had said to them about caregiving.

ctdc3000 Nov 2016
Patience...and please get as much information as you can about the type of dementia you're dealing with. That has helped me a lot with my mom. We had a doctor's visit and she echoed almost everything I've seen on this site and other forums regarding dementia. So helpful!

LizzieG Nov 2016
I've learnt that you can't do it all on your own and its not a failure to admit that. Also that while important, your elder's is not more important than your own.

LorrieB Nov 2016
Thanks, Rainmom. I will definitely do a post about how important it is for caregivers to care for themselves, guilt-free. Sounds like there's a story there about being thrown under the bus! Would you like to share privately? If so, send me your email address and we'll take it off-group. If not, no worries, and hang in there....

Rainmom Nov 2016
I learned that even your own parent will throw you under the bus if that's what it takes for them to live the way they want - when they are no longer capable of maintaining that lifestyle on their own, whether due to mental AND or physical decline. AND doing what you need to do to maintain your own mental and or physical well being does not make you a bad person.

LorrieB Nov 2016
I will definitely do a post on patience, even though I feel I'm still learning this lesson. Were you kidding about the drug-assist? I have considered it, but I'm wary of the connection between use of these drugs and my own mental fitness.

pamstegma Nov 2016
Patience. And if you need lorazepam to be patient, then get some.

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