Caregiver to Caregiver

“Did you know Gladys Smith is at the Better-Than-Home Nursing Center?”

First, let me explain than I made up the names of the person and place to protect the identity of the dear old friend that, according to the information I had just been given by a relative, was no longer living in her own home but in a long-term care facility. And by the way, any facility that would dare to go by that misnomer should not be trusted.

“Really?” I try not to respond to any question in that manner, being that it sounds as if I am questioning the honesty of the speaker. But I was shocked.

The reason I was shocked? Gladys (remember, not her real name) has a bunch of children, grandchildren and great-grandchildren. Surely, among them could not at least one step up to become caregiver for this lovely, precious octogenarian? After all, she is in relatively good health – no major illnesses – just growing old and frail and unable to live alone.

“Wow, I never pictured her being placed in a facility; she has such a large family.”

“I talked to her daughter, and she says Gladys is very happy there and enjoys all the activities,” my informer continued. “All her children are so busy with their own families.”

 “Isn’t she part of their family?” I asked rhetorically. 

From my point of view, there is no place like home to provide care for a loved one who can no longer take care of herself. My children and grandchildren have heard me say that. Many times. A few times I also added, “And if none of you can take care of me then just let me die.”

I do not intend to be macabre or intimidating; I just really do not want to spend my waning years in a nursing home. Having already spent seven years working in long-term care facilities, I have come to the conclusion that I would be a miserable and incorrigible resident. I imagine my doctor would have to prescribe PRN Ativan to enable the staff to cope.

That being said, I have known some people who did well in a facility. Whether they really didn’t mind or had just accepted their fate, they had acclimated to the nursing home culture. And then there was dear old Auntie Sallie (again, name change) who – as her niece tried to retreat following her weekly visits – went kicking and screaming down the hall in her wheelchair yelling, “You took my house and put me in this ol’ place!” She would wail that condemning phrase several times before bursting into uncontrollable sobs. This scenario was replayed every week – for several years – until Auntie Sallie went home to Glory.

I am often asked, “Which is better – home or facility care.” I have already made my personal preference very clear, but every family is different, with various needs and abilities. If you are reading this because you are a family caregiver, then you have already been through this discussion. But if you are just now considering what the years ahead hold for your elderly loved ones – or if you are getting up in years and wondering who will take care of you – I would like to offer some suggestions to consider. It really is never too early to plan for the future. 

• What are the desires of the one who will require care (the care recipient)? This should be the main consideration and honored as much as possible. It is important to discuss all viable options with family, make plans and put them in writing. My favorite way to do this is by using the Five Wishesform, which is one of several advance directive documents that is available (fivewishes.org). It addresses medical, personal, emotional and spiritual needs in non-legalese and is a good guide for family discussions.

• Find out which family members are willing, able and available to take on the role and responsibilities of caregiver. The time to discuss this with family members is now. None of us know what tomorrow will bring. People are disabled in accidents. A stroke can turn a strong man or woman into an invalid overnight. Whether it is your future – or that of your parents or spouse – have the discussion while everyone can have input. 

• Another aspect to address when considering home care is: If needed, can alterations be made so the home will be accessible and safe during various stages of illness or decline? In most situations this should not be a problem. Simple DYI projects such as installing grab bars in the bathroom or adding a ramp to an entrance may be all that is needed, and most homes can be easily improvised to provide a comfortable and safe environment. 

• What are financial options to help provide in-home assistance through reputable agencies to fill any gaps in the calendar or provide respite care? Because even the most dedicated caregivers need some time off to rest and refresh, you need to consider how this will be provided. When a sibling lives too far away to serve as a caregiver, often they are willing to contribute financially to help meet this need. The newest trend seems to be selling in-home health care insurance to seniors as long-term care insurance premiums have skyrocketed and the number of companies selling these policies has decreased. Insurance is complicated and can be tricky – and is definitely not my forte – but just wanted to mention the possibility for those who may be interested. There are millions are sites on-line that you can check out for more information.

When asked, most people say they would prefer to stay at home as long as possible when they grow old and infirm. Others are content to move to an assisted living or other health-care facility. Each person, along with family members, must make the decision they consider best.