What would HELP you through this caregiving process?

Join AgingCare! I wish I'd found this community years before I did :)

Build a team.
Delegate.
When you ask for help or support from family, be specific and be reasonable: not everyone will be prepared to make the effort you do, and they have the right to make different choices.
Mentally separate your loved one's issues from your own.
Don't wrongly identify all painful emotions as guilt.
Credit yourself with judgement and strength.
Do not blame yourself for not being able to rescue every situation. You are not in control of life.
Respect others' different wishes for themselves.

In addition to the very wise list above:
1. Realize that not everything can be fixed. Sometimes, a little amelioration the best that can be done.

2. Become familiar with the concept of "the least bad choice".

3. Understand your own limits. Be assured that saying "no" is okay.

4. Remember that people have been getting old for millenia. Many have done this without loved ones.

5. Bad things happen to old people--falls, illnesses and the like. These things are often no one's fault--not yours, not the elder's. The most comforting story I heard was from an RN/discharge planner after mom broke her hip with 2 aides in her room. RN said to me "MY mom broke her hip with 3 RNs in the room and one of the was ME!".

A whole group of jobs and society were created for just the reasons you say. Solutions to making caring for an elder easier. Homecare (CNA's, homemaker/companions, live-in help), nursing homes and assisted living facilities, and senior living communities.

For people who want to be an elderly person's caregiver there is one sound rule that must be kept and obeyed at all times because if it isn't then the caregiving arrangement will always fail spectacularly.

Caregiving must be done on the caregiver's terms and NO ONE else's.

The caregiver must lay out boundaries for what will be acceptable for them as caregivers and what will not be. Those boundaries must not be crossed in any and every caregiving situation.
They must always remember that giving the elderly person they're caring for what they NEED is often very different than what they WANT. What they need must always be first.
No caregiver is doing a bad job or failing at it if they have to bring in outside help. Or if they don't move in with the elder or allow them to move into their home. Or if they have to place them in a care facility. Everyone's situation is different. A caregiver cannot ever let parental guilt, emotional manipulation, or family chastisement and interference put them in a situation that they are unable and unwilling to cope with.

Recap: 1) The terms of care and boundaries are set by the caregiver and no one else. 2) Recognizing that what the elder needs will not always be what they want or what other family members and friends want for them. 3) Never allow guilt or emotional manipulation to overrule your better judgement.

What would help me most is not having anyone lay guilt trips on me for placing my folks in a 'home'. Especially from people on this forum who love to do it on a regular basis. THAT, in and of itself, would be THE most helpful thing of all.

Instead of laying guilt trips and pointing fingers, saying "I have it worse than you b/c I do hands on caring and you don't", it would be better to say "we're all in the same boat, just in different ways, so let's all stick TOGETHER and support one another on this difficult journey".

Feeling like we're all on the same team goes a long, long way to cheering me up instead of knocking me down.

For all those who ARE supportive, you are the BEST! This forum has been a wonderful place (for the most part) and I thank God for it all the time. I also thank God for the wonderful care both of my folks have received in the hospital(s), ALFs, rehabs and Memory Care they've been in over the past 7 years.

I just acknowledge I'm angry that this damned disease has stolen the love of my life from me. I ask for grace and patience every day to deal with the twists and turns and detours dementia has thrown in my path. I find myself agreeing with the most outlandish statements and theories that come out of this formerly brilliant mind. I dont take anything personally; and he has said some really ugly things. It isn't my husband saying them; it's a stranger with a broken brain.
Juse keep that one thought, his/her brain is broken. It helps keeping my level.

And don't be afraid to talk to people about what you are going thru. Don't complain, just let them know. A couple words of kindness from a good friend can lift your spirits for days.
And try to find the humor in the situation. Its hard especially when you get called the maid, or the name of a girlfriend he had 60 years ago, but remember HIS BRAIN IS BROKEN!! Hugs to all of you on this roller-coaster of a journey nobody asked to take💜💜

Don't be afraid to walk away from toxic people--family or not. Put yourself first, because, trust me, nobody else is going to. (Learned that the hard way).

It's OK if you cut someone out of your life forever. It's NOT Ok to stand and let someone take out their anger, hatred, whatever on YOU. You don't need to explain.

It's OK to cry.

Doctors who can be part of the solution, not add to the problem.

Every time my mother went into the hospital, she saw different doctors - even though her cardiologist group had privilege's at them - who gave her different advice; then upon discharge there was a list of doctors she needed to follow up with.

For example: since she had CHF, she was often admitted for fluid buildup...so she would receive IV diuretics. And a prescription for more/different diuretics upon discharge, to help keep the fluid down. So because she was on diuretics, it was recommended that she see a kidney doctor; so off we go to the nephrologist, who looked at the type/amount of diuretics, and told her that the diuretic load was waaaayyyyy too much for her kidneys to handle, so he wanted to greatly reduce the amount; which was great, except that then she filled up with fluids and ended up back in the hospital (and that was the last time we went to a kidney specialist!!) to start another round of IV diuretics, etc.

It really seemed that most of the doctors she went to saw her as a "system" (digestive, circulatory, etc.) rather than a person; and for some reason, none of them seemed to want to communicate with EACH OTHER, so I was left carrying a notebook with notes of what this one said, or what that one said. And, if you haven't already experienced this yourself in your own caregiving journey (and I'm betting most of us have!!) doctors DO NOT like being contradicted! They get really, really testy - like it's more important to them that you treat them as gods rather than advocate for your loved one! So if you say to one of the doctors "well, what you're telling me seems to directly contradict the instructions Dr. So-and-So gave us" they either 1) get really defensive 2) shut down the conversation 3) give you the "fish-eye"...but rarely did one actually allow us to give voice to our concerns without an attitude.

I feel very bad for people who are timid around doctors - be they the patients or the caregivers - and are afraid to question things that just don't make sense to them.

Find a local caregiver support group ASAP. I waited until I was at my breaking point before I reached out for help. I wish I would have reached out sooner, or even realized that help was out there, as once I found one, it literally saved my life, as I finally realized that I wasn't alone in this journey and that sharing our stories and struggles is more helpful than any therapist or medication.

And then make sure that you are taking time away from your caregiving duties to do things you enjoy. I think that's the biggest mistake caregivers make, not taking care of themselves or making time for some fun. I had to learn that the hard way, by becoming burnt out, before I realized the importance of self care. Once I learned that, it was amazing how my perspective and attitude changed for the better. And it doesn't have to be anything big, just little things, like going for a walk, going to lunch or supper with a friend, going shopping, or just sitting outside on your patio with a glass of wine and a good book. Whatever it is that makes you happy, that's what you should do.

Lastly I would say, don't beat yourself up over what you should have, could have or would have done, as that leads you nowhere, but down a dark hole. We all do the very best we can, and that is all we can do. We're all human, and have our own personal limitations, so give yourself some grace, and try to enjoy the journey, because before you know it, your loved one will be gone, and you will wish for just one more day to be able to care for them. God bless you all.

Wonderful responses!

When everything starts going south, placement in a facility is absolutely the best possible solution for everyone involved.

I will continue to praise hospice for the care they provide to my mom.

For some people it is the ONLY solution!

I have learned it’s impossible to completely care for an elderly if they are so bad off where they are leaving the house in the middle of the night wondering the streets or when you have to start bathing them and changing them and wiping them etc. it’s not the 1920s anymore where just the men worked and women stayed home and cared for their parents until they died. These days women are working just like men and if you are working full time because you have to then your mom needs to go into an assisted living where there are nurses who check up on them etc. long gone are the days where you can take on a 24/7 responsibility on your own. Even if you work an early shift and your husband works a later shift so there is always someone home with your parent ... you will eventually experience burn out. I guess it depends how much actual care your parents needs at this point.