If I could go back in time, I would undo the 7 weeks we all toiled through life with my dad on a geriatric psych ward. But we didn't really have a choice, because we needed to place my dad in a living environment that could safely care for his evolving needs as dementia demanded it. So our path into what is called 'placing' my dad ultimately came under duress, despite our very best intentions and efforts to stay ahead of this constraint.
It's a process and decision that sucks. When you can't care for people to the capacity that they need to be safe for all daily routine and function, there are options. That is the good news. The bad news is, it's probably impossible to find what you really want - which is a new home where the care, attention, time and love will match your own.
My dad willing left home for the hospital because he recognized his own frustration with his disease and wanted to "fix his brain." He didn't know that for more than 7 months we had been visiting alternative 'homes' for him, anticipating a future when we needed more support and believing we could make a good choice for him and that it would be best to help him transition to a new community while he could still integrate socially. We were on to something. And we learned a lot on the way. We mostly followed our noses on this journey, but there are some things that would have been helpful to reference in this process.
1) Know what is out there before you need it.
It's a vast sea of quality and choice out there. We visited large memory care facilities, small nursing homes and foster cares. We saw horrifying things. We met incredible caregivers, yet we also saw the industry tragedy that most senior care is grossly understaffed. Diversifying your understanding of the kinds of care will really put it all into perspective for you.
2) And on that note, know if you can feasibly adapt your home and life to let your loved one continue to live at home. This may or may not be possible, and it really deserves a wide lens of consideration if dementia is on the docket. Dementia's sidecar is sudden rapid decline - experiencing gradual changes over the course of a year is nothing when suddenly skills and behaviors are changing day to day or week to week. Caregivers and live-in caregivers for your home can be real options. If money is no expense and you can stand the idea of a stranger living with you, that could be fantastic. But other unpredictable factors are likely to be at play as well: in the case of my dad, he specifically indicated that male caregiving companions were critical to him. None of us could have predicted that at some point, he began to associate at least one of these male caregivers who would spend the day with him in his home as someone who must be having an affair with his wife. In his brain, that was what sense was telling him. He made it very clear when those people were no longer welcome in his home, and he flat out resisted allowing female caregivers to accompany his days. That was back when he was living at home. One of the hardest parts of the care process is constantly making decisions that may be outpaced by decline. Ordering equipment alone can take 1-2 months. That's an eon in dementia care.
3) Using an agency is a good starting point. However, agencies generally only show you places that have current openings, so you have to be insistent on your criteria if you are in the Step 1 phase.
Agencies get commission if a placement is made, which is obviously more likely with a more direct delivery of placement. The good thing about an agency is they are likely to have some familiarity with the places they take you (but not necessarily), and they most certainly take on the hassle of all the scheduling.
4) Know the jargon. As it turns out, Memory Care requires less staffing (in Oregon) than Assisted Living. It barely makes sense. Folks with memory disease generally need more support and daily interaction. Skilled Nursing is generally considered a short term care location, even if that is an asset you need to end of life. Foster care is state regulated home-like living. When I started reading up on licensure of foster care in Oregon, the value of this business swelled in my heart. Right off the bat, care ratios in adult foster care are strong. A maximum of 5 residents may live in a foster home, so even with just one caregiver on duty that doubles potential for care compared to the 1:10 ratio in nursing homes.
5) Know that life in a facility revolves around meds. This is not in and of itself a bad thing, but with so much to do and so many people to care for, caregivers are not really set up for success with individual care support if it doesn't relate to meds. Nothing will appear more important than that delivery of medicine will transpire, which means that if meds and getting teeth brushed are both on a personal care plan, guess which one always happens and which one maybe never does.
6) Value the possibility of adult foster care. Visit lots of them. Go to the ones that seem far away and meet the people who are doing right by our loved ones, hopefully creating comfortable and kind new home lives. Outside of sheer luck, it's the only way you will get access to the network of people who know other people and will tell you where they would live for the level of care you describe to them. Foster care wasn't an initial option for us because they can't be locked around the clock and are not secure. Unfortunately for us, my dad exhibited exit-seeking behavior when we started looking, which eliminated the foster home option. Nine months into the systems and stressors of memory care, the explicitly low ratio of staff to residents and individualized are things that we dreamed of ensuring . It's also important to realize that foster homes are licensed for different levels of care, so it's possible to find your dream caregiver personalities but not have access to their homes. Foster care is a labor of love. People are often doing this around the clock. There will be fewer people to 'learn' your loved one.
It's not fun. Having confidence in the compassion and care you need for your loved one invigorates every ounce of the weight of this process. Nobody can do for your loved one what you can (and can't). Gratitude for the people who aim to in the systems that be.
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