This is a beautiful tribute to those who have been lost to Alzheimer's -- some were a surprise to me. There are also some who are currently fighting the battle against this devastating disease. We need to keep the 5.4 million people in the U.S. and their approximately 15 million caregivers in our hearts. We need to remember those who forget and those who are caring for them - all the lives touched by Alzheimer's.
Please watch and share to raise awareness...
I decided to repeat a prior post, because it is more pertinent than ever for caregivers trying to manage care for a loved one in the hospital, nursing home or rehab facility. Please feel free to share your own hard-won experiences via the comments so that we can all benefit!
One of the most challenging caregiving experiences can happen, ironically, when your loved one is admitted to someone else's care: ie. the hospital, rehab or nursing home. In my own 17-year caregiving journey, my mother was only admitted to a hospital three times, two of those during the last 7 months of her life. Each time it was very traumatic (for both of us!), but what I found so stupefying was the total inconsistency of the quality of care. The difference was dramatic, both from hospital to hospital and even from floor to floor of the same hospital! It covered the whole spectrum between basically decent to almost criminally negligent. From these experiences, which I will not share in gruesome detail, I found three nuggets of truth to be evident:
1) Hospitals are not good places for the elderly, and are especially bad for those with any type of dementia. Anytime someone is in pain or physical distress, it clouds their thinking capabilities, and if drugs are given, they can intensify this effect. Same goes for the changes in routine, unfamiliar surroundings and upset in sleep patterns that happen in hospitals. In fact, according to a recent study, a hospital stay can actually be a causal factor, triggering dementia in the elderly, if delirium is present during the hospitalization. The article in Science Daily explains the long-term effects and also gives some ways to help avoid delirium and consequent cognitive decline: Delirium and Long-Term Cognitive Decline in Alzheimer's Patients Linked in New Study
So, for the sake of all concerned, take whatever steps are possible to minimize or altogether avoid hospital admissions. For example, during one emergency, I waited with my mother for over 5 hours in the hospital ER waiting room, only to find there were still several people (and hours of waiting) ahead of us. Because I knew Mom was in a weak and debilitated condition, getting worse by the minute, I called the local walk-in clinic. They had no one waiting, took her in within two minutes of arrival, examined and treated her in less than an hour. She improved dramatically by the following day, when I was able to get her in to see her regular doctor. We thus avoided what would have likely been an unnecessary hospitalization. That was a very valuable lesson. Obviously, you have to use best judgement as to the severity of the problem. It's always best to call 911 if you have a true life-threatening emergency, but consider the risks against the benefits for less threatening circumstances.
Another time, we waited over 11 hours in the emergency room, much of it with me sitting on a cold hard floor next to her gurney because they didn't "allow" family to be in there. I had to explain repeatedly that her mental status required my presence, since she couldn't answer questions or give a medical history. They eventually brought me a chair when they realized I wasn't going away, no matter what they said. (This was less an act of kindness than that they just got tired of tripping over me). This marathon ER experience happened in 2003, and I truly hope that hospital staff has become more aware of and sensitive to the needs of elderly dementia patients to have their caregivers present in these very upsetting and frightening situations.
2) The elderly are at risk for falling in many cases, and that risk increases when they are in a hospital setting. In fact, my mother's first fall, after living with us for nearly 8 years without a mishap, was when she was in the hospital. She was disoriented, on IV and yet managed to get out of bed to try to get to the bathroom on her own. She fell, but thankfully was only banged up a bit and didn't suffer any major trauma or broken bones. It was a wake up call for me! So, my advice would be to stay with your loved one as much as possible, and if you can afford it, hire extra care so that someone is in attendance when you cannot be there. If you can't afford this (it's quite expensive!) you can arrange for friends, church members, and/or other family members to volunteer so that there is adequate coverage. You will need to see to personal hygiene, such as brushing teeth (or cleaning dentures), shaving, putting in and removing hearing aids, and sometimes even bathing your loved one, depending on the staff (or lack thereof) in the particular facility. But don't expect the care to just happen. It won't. Doing it yourself insures that your loved one's basic needs are met and they can be comfortable. I also believe it helps them tremendously to remain "in touch" with you, quite literally.
3) And lastly, do whatever you must to "catch" the doctor while making rounds. Be sneaky, lie in wait. This may require being in the hospital room by 7 am or earlier, since many doctors do rounds before starting an office schedule. Ask the nurses what time a doctor normally sees patients and make your ambush plans accordingly. You want to communicate, question, understand treatment plans and diagnosis/prognosis. A new trend in so-called "care" involves having a "hospitalist" -- a doctor that is specifically assigned from a practice to care for all hospitalized patients from that practice. This makes absolutely no sense, since the attending physician may know nothing about the patient, having never seen them prior. If there is dementia or even just normal disorientation resulting from the injury or illness requiring hospitalization, the patient can't give vital information to assist with treatment or diagnosis, nor can they, in the case of Alzheimer's, even answer the most basic questions. This becomes downright dangerous to the patient, and I'm sure is frustrating for the doctor, too. Hence my advice to lie in wait if you have to, in order to ask questions and interact with the doctor in person. It is my firm belief, after witnessing some harrowing hospital horrors, that everyone needs an advocate to intercede on their behalf. As an advocate, you need to be very clear and specific in asking about any drugs that are being given, or considered, and what the risks vs. benefits are, as it can be a devastating ordeal if inappropriate medications are ordered. Case in point: Anti-psychotic drugs, such as Haldol (halperidol) are all too often given to Alzheimer's patients with sometimes deadly results. I have personal experience of this with two elderly relatives. The consequences were tragic.
There is an excellent blog post on this very subject at the Mayo Clinic Alzheimer's Caregiver Newsletter, which I will share here: http://www.mayoclinic.com/health/antipsychotics-and-alzheimers/MY02213/
Forewarned is forearmed, though it is such a shame to have to think of a hospitalization in terms of doing battle. Unfortunately, that is often the true nature of care in our present system. To be fair, there are still a few rare, white knights disguised as doctors, riding in with the best ideals, and highest standards. But, they are sadly more fictional than real these days. If you are fortunate enough to find one of these very special health care professionals, give thanks, hold on and don't let go!
Karen is a compassionate, enthusiastic student of life, who cared for her mother for 17 years. She brings her insights, compassion, experience and desire to share knowledge and healing to this ongoing conversation with others on the caregiving path. If you are caring for a parent, spouse, friend or other loved one this site offers sanity-saving tips, open-hearted self-care ideas, and an open forum for discussion, connection and sharing resources for the journey.
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