The Holidays and Alzheimer's

Republished from: https://alz.org/help-support/resources/holidays

The holidays are a time when family and friends often come together. But for families living with Alzheimer's and other dementias, the holidays can be challenging. Take a deep breath. With some planning and adjusted expectations, your celebrations can still be happy, memorable occasions.

Check in with the person with dementia

In the early stage, a person with Alzheimer’s may experience minor changes. Some may withdraw and be less comfortable socializing while others may relish seeing family and friends as before. The key is to check in with each other and discuss options. A simple “How are you doing” or “How are you coping with everything?” may be appreciated. Plan the holidays together, focusing on the things that bring happiness and letting go of activities that seem overwhelming or stressful.

For people in the middle or late stages, consider rethinking holiday plans. Everyone is unique and finding a plan that works can involve trial and error.

Familiarize others with the situation

The holidays are full of emotions, so it can help to let guests know what to expect before they arrive. If the person is in the early stages of Alzheimer's, relatives and friends might not notice any changes. But the person with dementia may have trouble following conversation or tend to repeat him- or herself. Family can help with communication by being patient, not interrupting or correcting, and giving the person time to finish his or her thoughts. If the person is in the middle or late stages of Alzheimer's, there may be significant changes in cognitive abilities since the last time an out-of-town friend or relative has visited. These changes can be hard to accept. Make sure visitors understand that changes in behavior and memory are caused by the disease and not the person.

You may find this easier to share changes in a letter or email that can be sent to multiple recipients. Here are some examples:

1.  "I'm writing to let you know how things are going at our house. While we're looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive.
2. "You may notice that ___ has changed since you last saw him/her. Among the changes you may notice are ___.
3. "I’ve enclosed a picture so you know how ___ looks now. Because ___ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable.
4. "Please understand that ___ may not remember who you are and may confuse you with someone else. Please don't feel offended by this. He/she appreciates your being with us and so do we."
5. "Please treat ___ as you would any person. A warm smile and a gentle touch on ___’s shoulder or hand will be appreciated more than you know."
6. "We would ask that you call when you’re nearby so we can prepare for your arrival. With your help and support, we can create a holiday memory that we’ll all treasure."

For more ideas on how to let others know about changes in your loved one, join ALZConnected, our online support community where caregivers like you share tips on what has worked for them.

Adjust expectations

The stress of caregiving responsibilities layered with holiday traditions can take a toll. Call a face-to-face meeting or arrange for a group discussion via telephone, video chat or email for family and friends to discuss holiday celebrations. Make sure that everyone understands your caregiving situation and has realistic expectations about what you can and cannot do. No one should expect you to maintain every holiday tradition or event.

Be good to yourself. Give yourself permission to do only what you can reasonably manage. If you've always invited 15 to 20 people to your home, consider paring it down to a few guests for a simple meal. Let others contribute. Have a potluck dinner or ask them to host at their home. You also may want to consider breaking large gatherings up into smaller visits of two or three people at a time to keep the person with Alzheimer's and yourself from getting overtired.

Do a variation on a theme. If evening confusion and agitation are a problem, consider changing a holiday dinner into a holiday lunch or brunch. If you do keep the celebration at night, keep the room well-lit and try to avoid any known triggers.

Involve the person with dementia

Build on past traditions and memories. Focus on activities that are meaningful to the person with dementia. Your family member may find comfort in singing old holiday songs, watching favorite holiday movies, or looking through old photo albums.

Involve the person in holiday preparation. As the person's abilities allow, invite him or her to help you prepare food, wrap packages, help decorate or set the table. This could be as simple as having the person measure an ingredient or hand decorations to you as you put them up. (Be careful with decoration choices. Blinking lights may confuse or scare a person with dementia, and decorations that look like food could be mistaken as edible.)

Maintain a normal routine. Sticking to the person's normal routine will help keep the holidays from becoming disruptive or confusing. Plan time for breaks and rest.

Adapt gift giving

Encourage safe and useful gifts for the person with dementia. Diminishing capacity may make some gifts unusable or even dangerous to a person with dementia. If someone asks for gift ideas, suggest items the person with dementia needs or can easily enjoy. Ideas include: an identification bracelet (available through MedicAlert®+ Alzheimer's Association Safe Return®), comfortable clothing, favorite foods and photo albums.

Put respite care on your wish list. If friends or family ask what you want for a gift, suggest a gift certificate or something that will help you take care of yourself as you care for your loved one. This could be a cleaning or household chore service, an offer to provide respite care, or something that provides you with a bit of rest and relaxation.

When the person lives in a care facility

A holiday is still a holiday whether it is celebrated at home or at a care facility. Here are some ways to celebrate together:

1.      Consider joining your loved one in any facility-planned holiday activities
2.      Bring a favorite holiday food to share
3.      Sing holiday songs and ask if other residents can join in
4.      Read a favorite holiday story or poem out loud

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The Importance of Medical Touch

Republished from: https://www.nytimes.com/2018/10/08/well/live/the-importance-of-medical-touch.html

It can show gentleness and compassion or carelessness and incompetence.

By Caitlin Kelly
Oct. 8, 2018

It started, as it does for thousands of women every year, with a routine mammogram, and its routine process of having my breasts — like a lump of dough — manipulated by another woman’s hands and placed, albeit gently, into tight compression. It’s never comfortable, but you get used to it because you have to.

Unlike previous years, though, my next step was a biopsy, for which I lay face down, my left breast dangling through a hole in the table. Several hands reached for what’s normally a private and hidden body part and moved it with practiced ease, compressing it again into position for the radiologist’s needles, first a local anesthetic and then the probes needed to withdraw tissue for sampling.

I was fearful of the procedure and of its result and, to my embarrassment, wept quietly during the hour. A nurse gently patted my right shoulder and the male radiologist, seated to my left and working below me, stroked my left wrist to comfort me. I was deeply grateful for their compassion, even as they performed what were for them routine procedures.

The following weeks gave me a diagnosis with a 98 percent survival rate: ductal carcinoma in situ, a condition that is not even considered a cancer by some. The diagnosis began a disorienting parade of more unfamiliar people touching my body, from routine blood drawing to a transvaginal probe (to determine my baseline uterine condition because estrogen inhibiting drugs can cause uterine cancer), to injecting a tiny electromagnetic wave device into my breast to guide the surgeon to the tumor’s exact location.

At midlife — apart from four orthopedic surgeries, three of them minor — I’ve been healthy, so my body had never before been so intimately and medically handled. Having someone puncture your breast isn’t quite like getting a cortisone knee injection.

Some of the procedures, some done with a local anesthetic, were uncomfortable, some downright painful. The thoughtfulness with which I was touched — all at suburban New York hospitals — made a real difference in my ability to stay calm and lie still as needed. My anxiety, even as a middle-aged adult, wasn’t just an annoyance to be ignored or dismissed.

And, as someone from a family that shows little physical affection, it was also surprising, pleasantly so, to be hugged by my surgeon when she delivered good post-op news and by a phlebotomist whose technique drawing my blood without the usual tourniquet was so deft I felt nothing.

Touch during medical procedures can be soothing or traumatizing. It can be gently and compassionately administered; alternatively, it can be roughly, carelessly or even, at worst, incompetently handled.

“Many patients feel that being touched is important to getting better,” said the historian Paul Stepansky, author of “In the Hands of Doctors: Touch and Trust in Medical Care.” His father was a small-town general practitioner in Pennsylvania, and Mr. Stepansky saw firsthand the effect of those personal relationships. “Medicine then was all about touching, and patients welcomed their touch,” he said. “It was integral to doctoring, and partly because physicians were part of the community, medicine was about the laying on of hands.”

Now, in an era of electronic medical records, when physicians can spend most of an appointment staring into a computer screen, physical connection between doctor and patient may prove even more important. “Touch promotes trust,” says Mr. Stepansky, “not just talking or ordering studies.”

Others have passionately argued the case, like Dr. Abraham Verghese’s push for more human touch in medicine. Dr. Verghese is a professor at the School of Medicine at Stanford University. His 2011 TED Talk in Edinburgh urged the audience to rethink clinical medical practice: “When we shorten the physical exam, we’re losing a ritual that I believe is transformative, transcendent and at the heart of the physician patient relationship.”

A physician’s role, he said in his talk, is “to touch, comfort, diagnose and bring about treatment.”

Patients with a chronic illness may spend decades, literally, in dozens of medical hands. Natasha Walsh, a political consultant in Alexandria, Va., who has Crohn’s disease, said she has experienced care both comforting and cold.

“I know there are patients who bristle at being ‘manhandled’ or poked and prodded, and after being sick for 20 years, that doesn’t bother me at all,” she said. “I have doctors who I’ve had a long relationship with who I feel comfortable enough to hug or be otherwise chummy with, so in those cases I absolutely feel comforted by their touch, just as I would a friend’s.”

Once, in the intensive care unit at Washington Hospital Center, “after a bowel resection gone horribly wrong, I’d gone completely septic and I had been in a medical coma for about a week and woke up and had no muscle tone at all,” Ms. Walsh recalled. “I could barely roll over. So one of the male nurses would wheel my gurney to the CT scan or M.R.I. rooms and had to physically pick me up and roll me into position, and I remember thinking how overwhelmed with gratitude I was for his strength and how gently he handled me.”

Yet she gave up on another local physician, a GI specialist, “because he never once physically examined me. He was almost too clinical.”

Part of patients’ challenge is not knowing how every physician, nurse and medical technician will treat them, even as we’re in pain and already anxious, feeling vulnerable. And survivors of sexual abuse or assault can cringe at the lightest of touch.

“It should be a two-way conversation about what you’re comfortable with,” said Susan Finlayson, a registered nurse and senior vice president of operations for Mercy Medical Center, a 178-bed university-affiliated Catholic hospital, founded by the Sisters of Mercy, in Baltimore.

Ms. Finlayson knows their local population well, one that is poor and underserved, and trains staff members to treat them with dignity. “When nurses come in here to work, we talk a lot about our values — treating the mind, body and soul,” she said. “Patients arrive because something very tough is happening in their life, so from day one we make sure that every new group we orient here understands that and offers them patient-centered care.”

While patients need and deserve gentle, thoughtful treatment, “health care is evolving, and gotten more businesslike,” she said. “We’re pressured to do more and more and to give better value at lower cost. It’s easy to get caught in that to-do list. It’s easy for staff to get burned out.”

As patients also navigate the additional obstacles of who accepts their medical insurance, they can end up being treated less than ideally. Can they expect consistently kind and compassionate care wherever they end up? “In theory, yes,” said Ms. Finlayson. “In practice, no. There’s so much variation in hospital culture, administration and leadership.”

Every patient needs a strong advocate to make sure to be touched and handled with kindness and competence, said Mickey Osterreicher, a Buffalo lawyer whose medical journey began in 2011 with a diagnosis of prostate cancer but later included the removal of a malignant melanoma and its metastasis to his brain. A life-threatening drug reaction required even more interventions.

Along the way, he lost 40 pounds of muscle, making it more difficult for nurses to draw his blood — “the one thing I’d always taken for granted as being easy,” he said. “But some people are really good at it and I didn’t feel a thing, and other times it really hurt and left me bruised.”

He wasn’t afraid to challenge his physicians, noting that some people are intimidated to do so if they feel their treatment is too rough. “Certainly as a patient you have every right to speak up. Certainly, some doctors weren’t happy when I did and bridled at criticism.”

While still facing quarterly M.R.I. and PET scans, he is healthy today. His best advice for getting the kindest care possible?

“Have a family member who can be diplomatic.”

Caitlin Kelly (@CaitlinKellyNYC), is a freelance writer in Tarrytown, N.Y., and a frequent contributor to The Times.