Assisting someone to improve their self-care: How to empower them?

So the Caregiver has been able to get help in caring for someone. But the one they are caring for wants no one but the Caregiver so does whatever they can to get rid of the help? Does the person have Dementia? If not, then time for a little threat. The Caregiver needs to put their needs first here. They need to tell the person that if they want her continuing to care for them, they need to allow her to have the services and equipment needed to do that care. Otherwise, an Assisted Living or LTC facility is in their future. That as one person she can't do it all, she needs help.

If there is Dementia involved, thats different. As the person doing the caring the other person really has no choice and having Dementia they feel no empathy and its all about them. So the Caregiver has to just do what needs to be done to make their job easier. If I am doing the work, then I get what makes my work easier. If I can find someone to sit with Mom a couple of hoursca day so I can have time to myself, then I do it. Does not matter what Mom wants. She is not alone and has someone to wait on her, its just not me.

Beatty,

It’s sad how codependency between a caregiver and the person that they are caring for becomes an obstacle in moving forward. I know that I struggled with this when I was a caregiver for my mom.

I didn’t even know of the term, FOG before this forum. Barb was the first person to inform me of this situation. It helped me to understand why I felt the way I did.

I look back and see that I taught my mother to be dependent upon me. Of course, she expected more from me because I was trying so hard to be superhuman.

In the long run it doesn’t work out for the best because deep down my mother hated being a burden on her family. She felt like she had to agree with what I felt was best.

She told me that she was sorry for all of my sacrifices shortly before she died. I know that she meant it.

The other thing that I kept saying was that I loved my mom. I didn’t realize that I didn’t have to do everything by myself for so long. Between my therapist and some really wonderful people on this forum I was finally able to let go.

Not everyone was kind and I was in such a vulnerable place in my life that it was hard to ignore the harsh criticism. Nowadays, I couldn’t care less about what others think or say.

It’s amazing how long term caregivers suffer emotionally and even physically. I neglected myself terribly due to the anxiety and depression.

Hindsight is 20/20, right? It’s been years since mom died but I still feel regret at times. I don’t know how you can convince people of anything if they aren’t ready. It takes time to process things and work through it.

Beatty, such a good question.

Is caregiver amenable to stepping away for a week? Maybe? Health issues?

Is caregiver amenable to introducing non-family caregiver as "friend", "laundress", "maid", i.e., a role that receiver can fit inside their "box"?

I think the important thing here is to talk to caregivers about the taking on of responsibility that isn't theirs. Taking on more than could ever conceivably be done.
In a normal spousal or parent-child relationship there are limits. You have a right to say no occasionally and there is a constant dance of negotiation. You want to go to Italy for vacation and he wants to go to France; you negotiate the matter.

But once a spouse takes on caregiving the spousal relationship often goes out the window and the beset caregiving spouse becomes a kind of "hired hand with no pay". A caregiver. The one who gives the care while the one cared for dictates the needs.
And the poor caregiver begins to take on a sort of "slave" mentality. As tho they must keep master happy all the time or what.
A normal give and take relationship is gone.
It is one the giver and one the taker and accepted as such.

Eventually the caregiver feels responsible for EVERYTHING. Even happiness.
I keep asking people, when in their human history were they ALWAYS HAPPY, and someone else responsible to MAKE them "happy all the time".
We keep hearing "Mom doesn't want" "Mom and Dad won't go" "he/she says 'no'". As though the one being cared for has a right to this dictatorial power just because they are ill and wanting, not "themselves".

It becomes a merry little dance of "no win". No one is happy. Nothing is solved. Everyone feels guilty for either being "in need" or in failing to "meet needs"
I think the worst thing is that there is ZERO honesty. The caregiver never says:
1. I can't do it all
2. No, you can't make this decision anymore because..............
3. I could not possibly do that.

Which is sad. Because those things are the facts. No one can do it all. When someone is failing it is no longer their decision to make where they will/should live. And no one can possibly do it all.

Would telling the recipient that getting extra help is for the spouse? Not that the care is but that it’s too much for them and some help is really to help them out, this way the spouse can direct and oversee the care and not be over taxed by both providing and managing all the care.

Beatty,

I'm only just now seeing your post. As you know I've got a long history as a caregiver and have seen this scenario play out a thousand times with a family caregiver.

The family member being cared for has dementia and is not in their right mind. They are not calling shots anymore and should not be deciding anything more important than what flavor of ice cream they want for dessert.
The caregiver/spouse needs to remove the word "allow" from their vocabulary. The spouse is the one responsible here and they need to realize that.

As you know it's much easier to prevent a shadowing habit forming than it is to break someone out of one. It's not impossible though. So here's what has to happen.

The needy spouse being cared for has to be left alone with caregivers. The other needs to leave the house and go while the homecare workers are there. The 'shadowing' spouse needs to be forced into adult daycare as much as can they can afford during the week.

Yes, there will almost certainly be tantrums, hysterics, agitation and anxiety. Do it anyway. The person can be medicated with an anti-anxiety medication to help with this, but they need to go. It's the best thing for everyone. You break a shadowing habit this way and your family member needs to be broken out it for their caregiver's sake as well as their own.

The spouse caregiver needs to call the homecare agency they use and tell them that the care recipient will try to cancel services and they are to be ignored when that happens. That takes care of that. I get phone calls from demented clients all day long about canceling services. I ignore them because they don't make that decision. Their POA, spouse, or family does.

Next, someone who is close to the caregiver/spouse needs to speak honestly to them because they've become a care martyr. No one wins when this happens. Have a talk with the caregiver/spouse and let them know that if they are not willing to take some responsibility for their situation becoming what it has and will not move forward to help it, you will not be available for them.
This means no "venting" to you about anything. You will not listen to one moment of complaining or negativity from them. They are not to ask you for anything. But if they're willing to be open-minded and actually improve the care situation you will help them all the way.

Barb, respite has been taken up, when forced via crises eg required surgery/accident.

There is zero willingness to use any therapeudic fibs. There is instead explanations with logic & reason. Logic is a worthy tool but no match for this! No match for such firmly set opinions rooted in emotion (usually fear/anxiety).

There is mostly the pattern of 'Do you want..abc?' rather than moving to 'It is time for..' Conflict avoiding behaviour I guess.

Beatty: My mother said "I'll pack your bag to go home." I told her that she had lost the ability to choose. She even had the opportunity to move into senior housing. but declined when her name came to the top of the list saying "I"m so glad that I stayed in my own home." My response "You'll left me with a real dilemma; you cannot live alone with blood pressure of 60 over 40."
Does any elder like change, really?

Sounds like:

The caregiver is too burned out to fight the relentless daily resistance of the care recipient.

The caregiver has untreated depression.

The caregiver (if old enough) now has the beginnings of memory impairment or dementer themselves (I am currently in this situation with my 104-yr old Aunt and her 71-yr old niece who provides 60% of her daily care)... ugh... !

What can be done about any of these scenarios? Nothing, unless and until the caregiver gives up the reins or the PoA (if different than the caregiver) basically fires/replaces her/him.

I know of a situation where the husband adamantly refused to allow anyone else to care for his wife with ALZ (and he wasn't that old). He eventually spiraled into depression and alcoholism because of his wife's extreme Shadowing and paranoia and loss of all his social life and joy. I suggested he hire a companion aid who came into the house every day, starting with a few hours while the husband was there, and stayed in the home no matter how worked up the wife got. He told his wife she was there to help him and not her. They eventually kept working up to more hours and his ability to leave the 2 alone together in a peaceful companion relationship. It took time but it eventually worked, and the aid was experienced in dealing with people with ALZ. BUT, the husband (the gatekeeper) had to accept this change in his promise/philosophy first.

Beatty, getting back to your post, the caregiver “is open to accepting help.... but the care recipient says no”. Perhaps focus on just that – what the response should be to ‘no’.

A long time ago I was part of a role-playing group (led by an interested pschologist). This is a tailor-made situation for role playing all the options that come for both parties after the ‘no’. It’s very safe. No matter how hot the care recipient’s meltdown, they aren’t there to get burnt. No matter how challenging it is for the carer to try on different come-backs, they can try them on for size – and see what happens after that. Often people can see beyond the meltdown. And of course in a properly organised role play, other people in the group can play each of the roles so that the carer can look at the situation from the outside.

Any chance of trying that approach?