Assisting someone to improve their self-care: How to empower them?
Am wondering how to help a family member. Suggestions welcome.
I KNOW you cannot change other people. You can merely lead the horse to water, etc.
My family member has a heavy care burden, yet is open to accepting help. Has home sevices already: aides, meal service & house cleaning. So, a positive base to build upon. They are in the process of an up-to-date needs assessment for potentially further assistance too.
But the care recipient says no.
Dislikes change. Only wants Spouse (has shadowing behaviour). Attempts to cancel staff/setvices regularly. Refuses equipment that could lighten the load. Appears to be given the power to do so.
We've seen this on the forum many times. A caregiver so entrenched in their support role they cannot see alternative ways. They act powerless at times. But they DO have power. DO have choices.
How to impower them to SEE? To step out of the FOG.
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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.
"So the Caregiver has to just do what needs to be done.."
I agree. But he won't. Still giving choices & allows decision to be made by she who lacks empathy & insight.
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.
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"?
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.
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.
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.
Does any elder like change, really?
When a person no longer has the ability to adapt and others become responsible for them, they don't get to be in control anymore.
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.
Everything you are saying is true. This is why a person MUST be broken out of a shadowing habit by whatever means necessary.
If they have to be forced into adult daycare, so it. When the homecare aides are at the house the faily caregiver MUST leave the home for the duration of their shifts. Let the person throw a tantrum, cry, get hysterical, get agitated, and have anxiety. That's what meds are for. Go anyway and let the homecare workers deal with it. There isn't a homecare aide in the world that hasn't had to deal with this sort of thing.
At some point the person gets broken out of their shadowing habit and the person they were shadowing can then have some bit of a life.
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?
Providing a safe space for a discussion - I can do. Helping with suggestions for different come-backs - can do. Provide a simple one line slogan for repeat use - can do.
But I feel the nagging behind the scenes must be like drip torchure, drip drip drip...
I like your suggestion. Known 'hot' topics could be moved to being discussed only in a 'safe' space.