SeniorStruggles Asked March 2021
What would HELP you through this caregiving process?
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I see so many of us - me included - lost, overwhelmed, sad, confused, angry, etc. over this rather awful process of caring for an elder as they approach the end of their life.
Does anyone have any actual strategies or solutions that would make this easier? What do you wish you had/knew that would make this better? There's got to be a better way to care for our elders without losing our minds! (And lives!)
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I would not have been able to do what I did for my Husband without the help of a GREAT Hospice team and with the help of the VA.
One of the best things that you can do that will make caring for someone easier is to ASK for help. When someone offers help TAKE it. When someone calls and asks what they can do GIVE them something to do. People want to help they just don't know what you need until you voice it. So when someone says.."what can I do" or "if there is anything I can do" have a list of things that need to be done. YOU: I have not had a chance to get to the store, next time you are there could you pick up a gallon of milk, eggs and a few cans of chicken broth? OR "I have a doctor appointment scheduled for next Tuesday would you mind sitting with Mom for a few hours? I scheduled my appointment for after lunch so she will probably nap the entire time."
The other thing you can do is hire caregivers. You do not pay for them but the person(s) you are caring for do. It gives you a break
And if appropriate have evaluations for Hospice done. With Hospice you will have a Nurse come at least 1 time a week. A CNA that will come at least 2 times a week and you will get equipment and supplies delivered. Medications will be delivered. And there are volunteers that you can request that will come and visit so you can get out for a bit. (they will not do "hands on care")
So to make it "easier" accept that you can not do it all. Get help where and when you can. And when it becomes unsafe you have to consider Assisted Living or Memory Care whatever is appropriate for the person needing more. But nothing about being a caregiver is "easy" just degrees of difficult.
So how do we deal with this?
There are 6 areas of caregiving and only 6 that have to be mastered in order for you to live your life the way you want. Once you define what you want each of these areas to look like, you are well on your way to your freedom and YOUR choices. Only 6 areas. Once the caregivers I work with understand the road ahead of them and the control they have, the stress lifts. There is no more burnout.
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.
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 had extenuating circumstances. Mom became homeless after Katrina. I wish I would have only agreed to make my housing her a temporary solution.
Live and learn! I love when you post to people without extenuating situations NOT to take a parent in because then there isn’t the unpleasant task of telling them that they have to leave.
You are the genius on the forum! So is Barb. Between the two of you, lots of future headaches will be avoided.
I am not saying that home care doesn’t ever work out. It does in certain families.
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!
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.
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.
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💜💜
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.
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!".
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.