Being that I always do my homework on whatever task is facing me, I was shocked by the sheer lack of good advice and guidance in the form of informed social discussion about Alzheimer's disease, and how little quality discussion was out there on what your options are as far as dealing with memory impairment and the daily challenges of nursing home life. I found one very good piece by a British author, here. And only in a recent article in US News an author openly talked about the grueling routine of having to care for parents with Alzheimers at one's own home. There is a lot of fractured information out there which really does not help. I realize, for many, Alzheimers and nursing homes are painful subjects and hard to talk about. Understandably, people want to hide when they or a loved one has it. Doctors don't always tell their patients that they have it. Families understandably go into denial about it. Looking back I think my family wanted to believe that my father was just suffering from the trappings of "old age," when in reality he had been getting increasingly ill since 2006.
Of course, there is plenty of clinical information on the Mayo Clinic site and at the Alzheimers Foundation, but nothing comprehensive about how you manage a loved one's care at a nursing home, what to ask the staff, what services they are supposed to provide, and what the residents' rights are, what the state and social services can do, what it costs, and what to do if you run into problems at the nursing home. Some people have posted occasional horror stories and rants on the internet about nursing home staff and residents' treatment. This and elder abuse happens (unfortunately) and if it does needs to be reported and dealt with immediately. In New York you can contact the state office of children and family services. Other states likely have similar organizations for reporting elder abuse. Luckily most of my father's caretakers were genuinely kind and nurturing people.
In the case of my father, we did not intentionally "put" him in a nursing home. He had been declining rapidly mentally and physically for the last 3 years. He had fallen several times and had begun to walk with a shuffle. And one day he got up out of his chair and collapsed, his right hip joint having sheered off at the socket from advanced osteoporosis. The paramedics came, ushered him out and to the hospital, and within a few hours the wonderful orthopedic surgeon replaced his hip ball and secured it to the femur, and off he was sent to sub-acute rehab at the nursing home next to the hospital. Things happened so fast it was a blur.
Surgery on the elderly is dangerous in the first place; anesthesia can exacerbate the problems the memory-impaired are already facing. During his first month in rehab my father thought we were staying in a hotel or perhaps on a cruise ship. At one point he thought he was with his long deceased buddies, staying in a lodge while hunting in the Adirondacks. He had a phone in his room and one night my mother got a surprise call from him telling her that he has been up at camp and that he would be driving home the next day. He wasn't in rehab a week when, in a moment when the nursing staff were overly busy, he tried to get up from his chair and fell and re-fractured the femur attached to the hip joint that had just been operated on. He told the staff that he was going to get his Jeep. His beloved Jeep. Dementia-related memory impairment is still not that well understood: he couldn't remember that he had undergone hip fracture surgery barely a week ago, but he remembered his Jeep and was determined to drive it home. Another surgery at the hospital, and then back to rehab. He would have several more hospitalizations over the winter and spring for a variety of ailments. For many nursing home residents there is downward spiral of going from the home back and forth to the hospital, lost weight never regained, increasing loss of the person's faculties. Every visit to the hospital resulted in a little more lost weight.
I won't name the nursing home he resided at but they did as good a job as one could expect for the area in which my parents lived and the local economic conditions that determined nursing staff wages and quality of the staff that could be hired. The place was clean and smelled fresh. Sure, the nursing home management handed us a photocopied-many-times-over booklet outlining patients' rights when my father was admitted to rehab, and when it came time to admit him as a resident we met with the senior staff, including the home's billing manger, who to her credit explained the up front costs, and how they encourage everyone to apply for Medicaid, for which you have to qualify by being below a certain income level and having very few monetary assets. But we could ask as many questions as we wanted, and did.
It pays to be prepared: I assembled a binder filled with questions about everything from taxes on the monthly bill to how often he would receive physical therapy to how often nurses made their rounds at night. Did transport to medical appointments cost in addition to his monthly fees? Did they track hydration of each resident? How often were special and entertainment activities offered? What medications was he on? How often would his doctor see him? How often would he be weighed? Is he getting 3 meals per day and snacks that he likes? Could we hang pictures and a calendar in his room?
Remember that you've hired the nursing home to work for you-- not the other way around although it can seem that way. Never stop asking questions and make requests every time you visit. It's important to visit at odd times such as Sunday night or early mornings-- the staff will know you're keeping an eye on your loved one and you'll see what really goes on. You have to work with them to make them understand your loved one's preferences and needs. My father hated broccoli and it kept showing up on his dinner plate. I finally had to email the home's head of food service and all his staff to get this corrected. Then his hearing aids were lost. Very expensive hearing aids. I told the staff that those needed to be found or the home would pay us for them; they turned up soon after that.
The whole nursing home journey is a trial and error process where you stumble in the dark and hope for the best, but need to be prepared for anything.
When I talk to friends and colleagues about this, I don't believe anyone is prepared for the cost. On the subject of financing a nursing home stay, there is some good information on the internet about Medicare and Medicaid- but these are complicated topics and it pays to do a lot of research. Medicare A, for example, covers basically one month of rehab at a nursing home. As long as the person is deemed "making progress" then it covers roughly half the costs for the next 90 days. Qualifying for Medicaid, apparently, is an adventure in itself and can vary state by state. Everyone is in a different financial situation. A good trust and estate lawyer can walk you through this. My advice is to get an attorney in your state who understands this area of the law. Oh, and its a very good idea to have had a health care proxy already drawn up, well before the person needs a nursing home.
In my father's case, once Medicare A ended after 90 days my father's nursing home cost us slightly shy of $9000.00 per month out of pocket, plus another $14,000.00 a month for his 24/7 helpers, for a total of $23,000.00 per month. Yes, I said Twenty Three Thousand US dollars. My father could not be left alone and required someone with him all the time to mind him. Most nursing homes except for very elite and super costly facilities cannot provide one-on-one 24/7 care for residents. In a typical American nursing home on a day shift there are 4-5 nursing staff and 2-3 Certified Nurses Aids (CNA) working a 40-resident wing. In addition there is typically a nutritionist, social worker, a physical therapist or 2, and sometimes volunteer workers. There are fewer staff at night and on weekends. They simply cannot keep up with the demand. And the staff have to tow the party line established by the nursing home owner or holding company. When his nutritionist, Libby (I've changed all the people's real names her to fictional ones to protect their privacy), told us he was eating well and at the same time had lost 20 lbs, I politely said I understood her position but damn right expected an honest assessment.
Nursing home staff are overworked, underpaid, and under-appreciated. They have a tough job, and they're mostly very caring people. I concluded that CNAs especially must be answering a calling of some kind. Occasionally I looked nosily at the job board in the front lobby of the building and at any given time the home had job openings for at least 15 positions which they were having trouble filling: geriatric nurse, CNA, cook, physical therapist, nutritionist, and so on.
My family was lucky to be able to afford to hire helpers (sometimes referred to as "sitters") because Dad couldn't remember to call for the nurse when he needed assistance, which was nearly all the time. He needed help with bathing, dressing, eating, drinking, and pretty much everything else. Dad has no clue about any of this other than occasionally when we reminded him that he broke his hip and leg he would say that it was good that we have health insurance. Looking back I'm glad he believed that as we wrote check after check every month.
He resided there for a little over seven months. It was emotionally draining and often depressing. But we tried to make the most of it, and there are always bright spots if you look for them. We sat with him through meals when we could. We played cards and read poetry- his favorite was Walt Whitman. Interestingly, the musical part of the human memory often remains long after all else is gone: if I streamed Vera Lynn or other 1940s music on my iPad he sang along, remembering almost all the words. We looked at old pictures, many of which he recognized.
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| My parents in summer 1953, soon after they were married |
Throughout the winter influenza, rotavirus, scabies, and all the other communicable diseases that float through group homes came and went. Entire building wings would be shut off and visitors discouraged from visiting or were asked to wear gloves and surgical masks. It didn't matter how much money you had-- these illnesses know no class or creed. When pneumonia came-- and it did often-- it always took lives. Hang around a nursing home long enough and you'll see all kinds of sickness, ailments, vomit, excrement, confusion, and pain. Most of the residents wear diapers. A person in the latter stages of Alzheimers disease often displays the cognitive abilities of a 4 to 6 year old. But these people can still feel, experience joy and sadness, and appreciate others. Often they cannot express themselves and become frustrated and agitated. As a result they often end up on anti-anxiety medications and/or anti-depressants.
Dad was diagnosed with uncomplicated senile dementia in 2006; in 2010 he was diagnosed with mild to moderate symptoms of Alzheimers. His MD at the time never told us about this and we fired him for failing to take proper care of my Dad. The new doctor we hired, however, cared for him very attentively through the end.
Because of the Alzheimers, my father often got the past and present confused. This is very common. Once when my mother was combing his hair he turned and asked, "If you're here and I'm here then who's going to watch the baby?" There hadn't been a baby in the house in almost 50 years. He hallucinated, seeing his mother and his two long deceased older brothers. Other times he saw objects that were not there, and squiggly lines on the wall. As his dementia progressed he developed tremors, which were halted somewhat by a visit to the neurologist and a prescription drug. He lost all sense of time or place, but fortunately not his sense of people, and he still recognized us. When we would gather up to go home towards the evenings we always felt guilty leaving him behind, and he would almost always ask, "Am I going home tonight? Shouldn't we get the Jeep and get home before dark?"
Most nursing homes will let you decorate your loved one's part of their room any way you want. We hung family photos in his room and brought in some plants. Photos help the person feel more at home. Some people bring in things like curtains, paintings, and other decor from the person's house. Never bring anything with any monetary value as I can promise, sadly, that it will be stolen. A nursing home is its own world and you need to become a part of that if you're going to succeed in protecting your loved one. No health care system anywhere is perfect, some are better than others, but you have to work with what's available to you in your locale.
The nursing home forms its own micro-community, often filled with characters. There was the wing matriarch, Edith, who at 96 had mild dementia but still walked unassisted, dressed beautifully every day and had her white hair coiffed perfectly at the salon downstairs. She proclaimed she relied on her beauty to get by. Her sisters came to visit her often and seemed to take care of her. Then there was Roger, a petite man who was comedian every day at lunch, mentally still with it and always cracking corny jokes. One elderly lady who was bound in a reclining wheelchair and every day steadfastly clung to a plastic toy dog and a baby doll always said to mother and I, "You don't have to go so soon, do you?" A baby doll? Yes, this is something commonly seen in nursing homes. Some patients find holding a doll or stuffed animal calming.
My father's room mate, George, was a solitary man, and a decorated veteran of the Korean war. He could be a little cranky and liked to swear but didn't really bother anyone. Sadly, no one ever came to visit him.
I cannot emphasize enough how important it is to look for the bright spots in such a place. One elderly lady who lived on my father's wing would always grab my mother's and my hands as we walked by and say how much we looked alike. Amusingly, two cats and a parakeet lived on my Dad's floor, and provided some distraction and cheerfulness. The cats would crawl onto residents' laps and often nap on their windowsills in the sun.
You may make friends with relatives of other patients as you know you are all facing the same inevitable outcome with your loved one. An old but healthy lady named Mildred who turned out to be a friend of friends of my parents would come every day to visit her husband who was suffering from the very latter stages of Alzheimers. She bonded with my mother. Her husband Jack could no longer walk, talk, dress himself or take care of his own bodily functions. He kept his eyes closed all the time and could not communicate at all. He had to be hand fed and Mildred always kept a child's sippy cup with her to get him to drink enough fluids. One day Mildred quietly told us: he stopped eating yesterday, and that was ok with her. He was dead within a couple weeks.
Meals were taken in a small dining halls-- each wing had its own dining hall and food was prepared in one big central kitchen and delivered to each hall. Residents usually sat 4 to a table, and at meals Dad made a few "friends." One, Charlie, was considerably younger than Dad and still had his wits about him. Charlie looked out for Dad, informing us of how well or poorly he ate, how he behaved, if he displayed tremors, and how the staff treated him. Charlie became our spy. We tried to take care of him in kind. Charlie was infirm and could not get out on his own. He said his room was too warm and wanted a fan, so we brought him one as a gift and he was as happy as could be.
The way the states regulate nursing homes vary, but in ours the staff were required to record how much each resident ate and drank at every meal, take their weight on the 1st of every month, and provide a bath or shower once per week. Don't be surprised to find bruises and cuts on the person sometimes; their skin becomes so fragile that scrapes happen routinely when transfering the person from wheelchair to bath, or they may cut themselves inadvertently or pick or scratch obsessively. A good facility will quickly bandage any abrasion, or dress the resident's arms with gerisleeves, then call you to let you know what happened. If you they don't call, raise hell with the nurse manager or higher up in the chain of command.
Be involved. Be a pain in the neck if you have to. Meet frequently with the nurse manager, social worker, nutritionist and others who take care of your loved one. It's your right. When I was not in town I would call the social worker and the nurse manager on my father's floor most days and asked about him. At one point, they thanked us for being so present, and admitted that residents whose relatives are frequently around get better treatment than those who are all alone.
Not long before he died, one day out of the blue Dad to turned to my mother and I and pointedly asked: you didn't sell the Jeep, did you? No, Dad. I told him that the Jeep was waiting for him in the garage at home. I then promised him that my husband and I were going to wash, wax, and detail it so that it would be sparkling for him for when he came home from the hospital. It wasn't a lie if it made him smile.
So here's where the car thread ties in. My father always drove a Jeep, for as long as I can remember. He was way ahead of his time and owned Jeeps in the 1960s and 1970s long before they become trendy. He loved his Jeeps, and the last one he bought was a 2009 Grand Cherokee Laredo, shown below:
Jeeps have their roots in World War II as all terrain military vehicles. There are all kinds of links out there about Jeep lore and history and they're easy to find if you want to know more. For you Jeep enthusiasts out there, there is a good general web site at allthingsjeep.
I'm not a huge Jeep fan, but they're iconic and many people love them plus they're outstanding off road vehicles and great in the snow. Jeep enthusiasts are often into the outdoors and and my father was no exception. He hunted and fished in some pretty remote places and could get to spots that others could not because of the terrain or road conditions.
I remember Dad's Jeeps going back to the 1960s, such as this one of his white Wagoneer taken in March 1968.
Over the course of my childhood I remember my parents taking our family to Florida during winter breaks in a later model Jeep he had bought, everyone eager to trade in the relentless winter for a week of sunshine. It was an almost annual event we always looked forward to.
The Jeep Wagoneer was the crossover 4-wheel drive/family car produced from 1963 through 1991, sometimes referred to as a luxury 4x4. Dad had several models during the 1970s and 1980s. When my parents dropped me off at college he owned a 1986 Wagoneer in a metallic brown color.
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| My father in spring 1986 |
He died in July at age 92 not from the Alzheimer's directly but from a combination of co-morbidities that accompanied it. Because it meant so much to him the family had agreed not to sell his 2009 Grand Cherokee until after he was gone, and we kept our promise. On a warm weekend in August I spent an entire day vacuuming and washing it, and cleaning its windows and vinyl until it shined spotlessly.
It wasn't the highest-end Jeep, but for my parents was more than enough car. It had a 3.7 liter V-6 engine with Quadra-Drive 4 wheel drive. The engine, shown below, looked showroom new.
Needless to say, it had several hundred views on Ebay and multiple bids. Selling it was a cinch. It had only 11,000 miles on it when we sold at the end of last August. The new owner was thrilled with it. This Jeep certainly was not luxurious, but quite comfortable with reliable 4 wheel drive that could tackle the nasty winters ahead, which the new owner wanted.
In the months since my father passed life is slowly returning to normal albeit residual legal, financial, and other matters that still need to be put to rest. My mother is getting out and starting to enjoy her life again, and had her first mini-vacations in several years over both Labor Day and Columbus Day. The December and New Years holidays will be fun this year, and we're all looking forward to them.
We've starting to go through my father's other belongings. There's no huge rush. Certain objects of his jar other memories and events-- both good and bad-- in our lives stretching back for decades. Grieving takes time and is different for everyone. There is a very good first person piece by the writer Olivia Judson here, on going through a parent's home and belongings after their death.
Life goes on. Just in the last week a friend of mine showed up to visit in a new BMW 6 Series.
Wow, I haven't seen that attractive kind of design from BMW in a while. I like it. Elegant and sporty at the same time. That M6 Coupe is particularly nice. My husband suggested sending me to the BMW driving school when I have the time as a fun getaway. I wouldn't turn that down. As always adventures are ahead and the road is wide open. My little Fiesta ST has been an awesome commuter car and loads of fun and my review of that, way overdue, is next.
