Caring for someone with Alzheimer's is quite literally a thankless task. Which is not to say that it's unappreciated, but aside from the first few months of an early diagnosis, Alzheimer's sufferers are generally oblivious of their own condition and naturally cannot comprehend the sacrifices made by their loved ones to provide care and keep them healthy?
But please don't read the above as being a condemnation of the unfortunate souls that have no control over what has happened to them. Clearly, the tragedy of Alzheimer's is that sufferers very early on "forget" they are ill. Rather read it as a recognition and acknowledgement of the selflessness and integrity of their caregivers. I say this because I think something happens in the heart of most caregivers that gives them the resolve to commit, in all likelihood, the next decade of their life to the care and protection of the person they love the most in the world. And sadly at the same time that a caregiver is making this internal resolution, they are also coming to terms with the finality of the diagnosis "Alzheimer's" and grieving everything that means for their relationship.
Too often, the tragedy and heartbreak of the caregiver is pushed to the background, as the Alzheimer's sufferer becomes the identified patient and the focus of everyone's attention. Tragically, in addition to the personal commitment a caregiver makes to the care and well-being of their loved one, they often are subconsciously abandoning many of their own personal goals and desires. Caregivers, while taking on all these new tasks and challenges that they never expected, are subconsciously strapping themselves in for the long haul.
Stubbornness is Born
Rising to the occasion; facing financial, legal and other new responsibilities requires a certain amount of tenacity and determination. For this reason I find that caregivers seem to be uniquely strong-willed. Maybe it takes a stubborn streak to be able to focus on the day-to-day grind of meeting the needs of another adult that has lost the ability to reason and make their own 'safe' decisions. But while stubbornness can be a positive personality trait when it keeps a caregiver going month after month, year after year; it can also be a negative trait when it suppresses an open mind to new and alternate solutions. Stubbornness can lead to inflexibility and can prevent us from accepting and opening up to new concepts and ideas. It narrows our field of vision. Like blinders on a horse our focus is reduced to what is in front of us at the moment.
As a Gerontologist I have seen it over and over again, maybe you have too. Too often I meet a caregiver that is wound up and ready to explode. It is obvious to everyone around them that they are extremely stressed out. Unfortunately they often have trouble admitting it, even to themselves. They will tell you that everything is under control. "I'm fine", they say. And, tragically, to the extent that they are "fine", they are heading for a very big crash. Besides the toxic effects of stress on one's health. They are closed off to the concept of surrender and the acknowledgement that they need help. But that is exactly what every caregiver needs...help. And I will tell you why:
Stress
Caregivers need to acknowledge and overcome long-term stress. It is a good bet that long-term stress is responsible for the statistics that more than 50% of caregivers die before the person they are caring for. That's right, half of all caregivers "check out" before the "identified patient". Why do you think that is?
Dr. Jamie Huysman, the co-founder of Leeza's Place, gives a great talk. In his speeches you can often hear him suggest that caregivers need to "take the oxygen first", referring to the preflight instructions that we hear every time we fly. This is an excellent illustration of the average caregiver's dilemma. Flight attendants, when giving preflight instructions, tell people traveling with children, that if cabin pressure is lost and the oxygen masks are deployed, they should put their own oxygen mask on before helping their children with their mask. The reason is that there are only a few seconds before you lose consciousness, and in order to be effective and save others, the parent (caregiver) needs to see to their own needs first. (or they won't be around to see to anybody else's needs later).
So I plead with my caregiver clients. concede that you need help, start taking more care of yourself and be willing to hand the job over to others whenever you can,. Remember that alarming statistic from above that over 50% of caregivers die before the person they are caring for. Well add another 5 - 15% that become incapacitated and no longer able to continue caregiving for their parent or spouse. The causes are many, it might be a stroke, or a serious cancer, or a fractured pelvis. Unfortunately, I have seen too many a cases of older adults with profound Alzheimer's whose caregiver is out of the picture. I know this from managing assisted living communities for almost twenty years.
Over the years I have spoken, one-on-one, with hundreds of caregivers. My overwhelming impression is the unwavering love and commitment they have to their loved one. They genuinely believe that no one can care for their parent or spouse as well as they can. They believe that no one can possibly know their loved one as well as them. To a great extent I agree, and this is why I continue to recommend that they take action to preserve their health. Because if something happens to them, who will care for their loved one? So to manage their stress I encourage caregivers to use adult day care, to find respite care options, and to attend support groups. For example; adult day care gives them a day off from their 24/7 caregiving, respite care allows them to run errands and see to their own health care appointments, and in support groups they can share their experience with newer caregivers, while learning from more experienced caregivers. Most of all, caregivers need a way to shut down the stress response in the body. A topic for another article, I will tell you briefly that stress is a physiological response that causes the brain to release hormones and neurotransmitters into the body, that in turn alters our physiology for survival. Which is great in the short-term, but if left on too long, like in long-term or chronic stress, it causes damage to organs and the immune system. Resulting not only in burn-out, but in illness and scary statistics that say caregivers are a coin-flip away from...well... you know.
Board and Care
I also recommend board and care and assisted living. Usually, this is the option that caregivers are very specific about NOT doing. And there you have it, before I can finish my sentence: they are railing how they will never allow it. These stubborn caregivers have made up their mind, sometimes years earlier, and unfortunately they are not about to listen to anything that challenges their predetermined notions.
But there are some very good reasons for being open-minded about assisted living. For example there comes a time, especially with Alzheimer's Disease, that the care needs of the sufferer are greater than the caregiver's ability to provide them. Given this circumstance, it would be a terrible disservice to the loved one, to keep them at home with inadequate care. Tragically, what generally happens is caregivers put this off too long. Unfortunately, when you wait too long, the only placement option is going to be a nursing home. Your loved one's care needs at this stage become medical not custodial, and therefore surpass the services offered by assisted living or board and care. You effectively have over-shot the window for board and care and are left with only the nursing home option.
The best way to decide on this sensitive topic is to go visit 2 Assisted Living Communities and 2 small Board & Care homes. This will give you a good cross-section of what they are like. It's never too early to go look. Get the information and brochures and put them away for future reference.
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