The only time I ever heard about social workers before was on shows like CSI

They were always the ones taking children from parents

Mind you, usually the parents were in a big pickle, one thing or another, but still, my image of the profession was generally over worked cranky old ladies

So when several suggestions for social workers to lean into our situation came in, my first reaction was we’d meet a grandmother looking woman, reading glasses down at the tip of her nose, who’d come in looking for all the ways I wasn’t caring for Matt well

I had no interest in hearing or seeing some cranky old bitch

OK, at this point, I have been schooled on this, my mind changed

We met Cleveland through our health system, Sutter, when our primary doc qualified Matt for in home therapies

It started as a recommendation for physical therapy, but soon many of the boxes were checked and we got to take full advantage of the resource pool of their in home therapy group

Occupational therapy, social worker, speech therapy, social worker, nurse and nurses aide

There is one thing that I have found so true

Even in my evolved ability to manage a lot of moving parts, orchestrate a strategy, execute, pivot, move the ball forward down the field

It is humanly impossible to be all, everything to your loved one going through dementia

Trying to prove that statement wrong is just plain asking for it

This journey demands everything, absolutely everything from you

Emotional, physical, tactical, creative, collaborative, spiritual…….for a length of time no one can ever say

As soon as you feel you have things dialed in, something else changes

One thing we know also to be unfortunately true: it only gets worse, this disease

So what’s the trick? So far, if you were to ask me, I’d say the following things really help:

• Live out loud, bring together community that can support you in little ways
• Seek out professional help, here in lies the true value of social workers: they know or will find out what resources are available, work with them to peel back the onion layers at a pace you can absorb

Cleveland is working to shorten the path to things like discovering if the Medicare GUIDE program can help us

This relatively new program has a goal of lifting the burden of caregiving, Medicare has finally gotten real with the well documented stats that dementia is more health harmful for the caregiver than the one with the disease

I can see right off that the program isn’t perfect, but it is something and seems like evidence the US medical system is waking up to caregiver health

We understand it can provide $2,500 worth of respite relief along with other support services

And sometimes, just having someone to talk to about all this is medicine, God knows the neurologists are clinical…no true help in living with all this

Here in CA, there are also caregiving resource groups, locally here it is the Redwood Caregiver Resource who are focused in a similar way, Cleveland is helping me navigate that as well, after several lackluster attempts on my own

They too provide respite grants which can be applied for

This all takes time to explore, and I am no expert because I am only now researching into these programs

Social workers, good ones, can carry some of this load, get you up to base camp like a Sherpa

Day Clubs are out there too……where there are many to one ratios of qualified care givers to those who attend who have dementia

The point is, help is out there beyond shelling out boatloads of cash for private care and putting the health of the caregiver at such high risk

While it took me a while to get there myself, as a caregiver, I don’t feel like I have to have a concurrent death sentence

That sounds horrible……but this disease is horrible, it is a death sentence

I feel deep in my heart that Matt would want me to live and thrive, not be weighed down by his unfortunate disease

I know he would have stood by me like I am standing by him, like he stood by his father, if the shoes where switched and I was the one with dementia or some incurable disease

I know I would want him to continue to thrive, be happy, fulfilled

He just isn’t able to say that all the time now because his life is in crises; from time to time he confirms it, usually when he expresses his lack of desire to be a burden

So these 2 things can be true at the same time: I can stand by him every step of the way in this AND I can take care of myself

To do that, I need a shitload of help, from family, friends, doctors, social workers specialists, in home care givers, day clubs, Rock Steady boxing…….interested kind hearted strangers, Amazon (God bless the convenience of Amazon and Uber Eats!)

If you have made it this far and you have someone in mind…..check out the podcasts at Care Blazers

A geropsychologist, who cared for both her parents, makes the important points about caregiving so clear, puts caregiving for these horrible diseases in clear perspective

Morale of this story, in my humble opinion, doing this alone, caring for a loved one alone, especially a spouse, is impossible….it need not be since help is out there in many forms

It’s super hard watching a parent be over burdened trying to do it alone, my heart goes out to anyone who is in this situation

Little by little maybe you can push the ball downfield by lifting the burden of research to a level their lift isn’t heavy

The engagement of a social worker, joining a support group (Alzheimer’s Association is a great place to start), pushes the ball down the field a little, before you know it, momentum builds…..