Since the beginning of the Covid Calamity I have carefully avoided humans while living and working. I have cabin fever. And a little anger every once in a while. Being a caretaker myself I realized this would be a marathon that I would win by finishing. Being there at the end was the gold ribbon.
So how would I get there? I tuned to three things; pacing myself, accepting that my life would be different, and pursuing the things I could do. I often have to force myself to begin a task but after five minutes I get caught up and feel better.
Pacing myself is a two-fold operation. There is pace for my mental health and a pace for my physical health. For my mental health I decided that I must accept the situation without fear and anger. I stopped looking for a miracle fix. I wanted movies with happy endings like a Lifetime movie.
For my physical health I decided to take walks outdoors in rain or shine, cold or hot. This was also really good for stress and cabin fever. Monday, Wednesday, and Friday are weight bearing, Pilates, or some other physically demanding exercise. Cleaning the house or mowing the lawn gave me a sense of normalcy along with physical exercise.
Acceptance may be the most difficult. I just want to have the freedom of movement I took for granted. I want to hug my daughter whenever she stops by but safety stops me. We have decided on an air hug that I now feel when she wraps around the empty air where I would be.
I have had to have delivery of many items I used to run into the store and grab. I ordered groceries and chose cherry jam for five deliveries. I have gotten all kinds all kinds of jam except cherry. My new acceptance has opened me up many flavors of jelly that I would never have enjoyed.
I committed to spending time thinking about what I can do instead of being angry about what I could no longer do. Dining out was taken away so I cook super meals and bake bread. Projects I would ‘get to’ I finally did. 25 years ago I shot video of the Atlanta Ballet and Georgia Tech putting on a performance. I kept saying I would ‘get to’ it and this year I did.
I hear people say they want to go back to normal. I have been reminded that every day is a new normal with or without a pandemic. Next year’s normal will be very different than this year’s. Life does not sit still nor should you.
Do what you can in today’s normal and leave the old normal alone.
A message from your Alzheimer’s Disease Research Center
We are addressing this to all the family members and friends who provide care for persons living with Alzheimer’s disease and similar illnesses. The care you provide is always vital to the quality of life and well-being of that person. The Novel coronavirus (i.e. COVID-19) pandemic places extra burdens on you in providing that care. We want to provide you with information you can use to strengthen the effectiveness of your caregiving and assist with your own peace of mind during this time.
Some Basic Facts. The information below represents what we currently know about COVID-19. We present these facts starkly because this is a serious situation. Having good information should help you to protect yourself and your person with dementia.
Something New. Novel coronavirus – or COVID-19– is a new strain of a virus that attacks the respiratory system, but other organs as well. Because it is a new strain, very few people can resist it, no matter how hardy they may be. Our bodies haven’t seen this strain before, so our immune systems haven’t developed ways to fight it off. Also, there is, as yet, no vaccine, so no medical measures can yet be taken to protect us against it.
Serious. It is difficult at this time to have a very accurate picture, but COVID-19 appears to be a serious disease threat. The Centers for Disease Control and Prevention (CDC) include, in their range of possible futures for the illness, a prediction that more than half of the US population could be infected. The illness appears to have more serious outcomes than the flu, and death rate predictions are higher.
Risk Factors. COVID-19 requires the body’s immune system to mount a response to fight it off. According to the World Health Organization, anyone who has a weak immune system is at risk not only for acquiring the illness but is vulnerable to becoming severely ill with the virus. Two factors are associated with weakened immune response: age and underlying chronic conditions. Those over 60, and especially those over 80 (even those who seem fit), are at higher risk for acquiring the illness. Also, smokers and individuals with chronic conditions like cancer, lung disease, diabetes, high blood pressure, and heart disease are at increased risk for COVID-19.
Points of Entry. The illness enters the body through the nose, eyes, or mouth and then proceeds to the lungs. This is why we are advised to avoid touching our face. It may also enter through particles in the air. This is why social distancing and avoiding crowded situations are recommended.
Alzheimer’s and COVID-19.The person for whom you provide care is in a high-risk situation. Most persons living with Alzheimer’s are over the age of 65 (one risk factor), and most persons over 65 have at least one, and typically more than one, chronic illness (the other risk factor).
Guidance for Caregiving. We recognize that we are relatively early in this outbreak and that information and guidance is coming out in an ongoing way, so the guidance we are providing is guidance for now. Follow these general rules to protect you, the person you care for, and your family.
General Rules – Please follow these rules even if you or your person has not been diagnosed with COVID-19 or neither of you is showing signs of it.
Self-Care. The best protection for you and those you care for is for you not to acquire the virus. Do your best to stay healthy. Take your medications as prescribed and follow your exercise and rest programs.
Handwashing and Sanitizing. If you leave the home, always wash your hands when you return and frequently during the course of the day. Cleanse hands for at least 20 seconds (sing Happy Birthday twice). Use hand sanitizer often. Use hand lotion to prevent drying and cracking of skin.
Do not Shake Hands. Avoid direct skin-to-skin physical contact. Wave; nod; bow; give the peace sign. But don’t touch. Do an elbow bump, if you’re both in sleeves. And fist bumps? That’s skin-to-skin, too. So don’t.
In Your Home. Clean surfaces in your home using the CDC’s recommended solution of 4 teaspoons bleach per quart (4 cups) of water. Clean door knobs, sink handles, refrigerator and oven doors, steering wheels, and other high-use surfaces daily. Change hand and kitchen towels daily. Open windows (if possible) to increase ventilation. Do not share dishes and utensils.
Manage Underlying Chronic Conditions.Chronic conditions, such as diabetes, heart disease and COPD tax the immune system. Adhere to management regimens to prevent the condition from worsening. Ask providers to call in refill orders and see if the pharmacy can deliver – or has a drive through pickup window. Do this for the medications that both you and your care-recipient take.
Monitoring.Watch yourself and your person for symptoms (fever, cough, sore throat). Take your temperature occasionally.
Social Distancing. Remove yourself and your person from close contact with groups of people. This is admittedly very difficult, so here are some thoughts:
If you are working outside the home, see if it is possible to work at a distance through telecommuting means (phone and videocall contact, etc.)
Examine patterns of social interactions.
If you regularly attend worship services, see if your place of worship offers streamed services, or consider using the regular time of attendance as a time of home worship.
If you take your person shopping or to malls, reconsider. If you must, perhaps use smaller shops at off-hours, and avoid very crowded places. Call friends, family, or neighbors to see if they are going to the store and can pick up items you might need.
Think about outings that present minimal risks: going to large parks, taking walks
Limit going out to restaurants – or stop altogether. If you cannot stop going to restaurants, call ahead (or look online or on the restaurant’s app) to order take out and see if they can deliver curbside
Here’s a really hard one: family visits.
Keep them small – one or two people at a time
Ask everyone who feels unwell, has come into contact with people with the virus, or has any symptoms to stay away. Ask all others to follow the same safety rules you are (wash hands).
No grandkid visits
Do not Shake Hands. Avoid direct skin-to-skin physical contact. Wave; nod; bow; give the peace sign. But don’t touch. Do an elbow bump, if you’re both in sleeves. And fist bumps? That’s skin-to-skin, too. So don’t.
More Home Engagement Opportunities.If you have relied on outings – like those listed above – as a way to keep your person pleasantly occupied during the day, then removing them from the schedule means you have to fill in those times with other engaging tasks and activities. So, plan for that. Consider the kinds of at-home activities that seem to please and engage your person. Are there ways to repeat such activities over the course of a day? Are there similar kinds of activities you might try (if the person enjoys helping with cooking, might s/he enjoy helping with the laundry)? Try new things out and add those to your toolbox that you see to be working well.
Pay Attention to Your Own Isolation. If following the “rules” means you are finding yourself more homebound, be sure to check to see how this is making you feel. Take some preventive steps before you begin to feel a sense of being isolated. Make arrangements with family, neighbors and friends to have regular contact. Phone and FaceTime calls can be helpful. If you do take walks with your person, invite another person along. If a friend or family member can come in to be with your person for brief periods of time, seek and accept that help, and take yourself for an outing – observing all the rules when you return (and also the advice about having help come in).
Help from Outside the Home. If you have someone coming into the home to help care for your person, then the general rules should apply to them as well. The person should adhere to hand washing rules, be urged to follow good self-care procedures, and monitor him/herself for symptoms of COVID-19. If a home health care worker comes to your home and also visits other homes, ask to review the procedures she or he has in place to prevent the spread of COVID-19 to their clients.
Medical Care. You are very likely in a position where you have to manage your person’s routine and chronic health care as well as to respond to changes in condition or react in an emergency situation. It’s important to recognize that, with COVID-19, you need to have a plan for how to handle some medical situations that might arise in the course of caregiving.
Primary care providers (nurse practitioners, physicians, physician assistants) can bill for telehealth with Medicare and Medicaid patients. So, call the office and see if they have put procedures in place for handling – through a phone call or a video call – routine visits and visits related to any concerns you may have. If they don’t, ask for advice about
Handling routine and chronic care situations that you’d usually manage by bringing the person to the office.
Dealing with possible COVID-19 symptoms.
Responding to emergency situations – should you call the office first? Go directly to an Emergency Department?
If you feel you have an emergency, but are not sure, and cannot get through to your primary care provider, call your local Emergency Department. Most have a nurse or physician on duty who can offer advice about the need to come in immediately or wait at home.
If you think you or your person might be showing signs of COVID-19 and think you should be tested, it’s important to call your primary care provider (or the Emergency Department or your Health Department) first. They may be able to provide advice about whether you need to be tested immediately or if it is appropriate to wait. If you do need to be tested immediately, they may also be able to direct you to the appropriate testing location. In many areas of the country, the clinic office or Emergency Department may not be where you can get tested, and testing sites may need a provider’s referral before they will test you.
If you and/or your person are participating in a research study, call your research coordinator for current information. Some studies have been put on hold; others may have moved to enable contact at a distance (e.g., by phone).
If Your Person is Living in an Assisted Living or Skilled Nursing Facility:
It is increasingly likely that visitors, even close family, will not be permitted to visit relatives in such facilities.
See if the facility can help you to make contact by a distance. Can they help put a phone call through? If the facility has WiFi and if you have an extra phone or tablet computer (iPad), will they help the person to use it when you call so the person can see your face.
The staff will continue to provide care and comfort, but you will not be able to have in-person time with the person that may be important to you. If you are alone and feeling this as yet another loss, take action. Try to go out for a walk, call family and friends, listen to your favorite music, look at scrapbooks or read a good book. If you belong to a church or synagogue, call and ask to be put on a prayer list. Many religious staff are working from home and can respond to your messages. Have family and friends mail cards and letters to them.
There was no mistaking her beauty. At 78 Janet was in
college shape and her engaging smile drew you to her. Her figure was enticing
and she moved and laughed like a woman who had provoked males her entire life
and thoroughly enjoyed the attention. And she could not remember what she had
eaten for lunch or who just called or where she went yesterday or if she was on
chemo therapy. She was completely free of pain or anxiety concerning her newly elevated
cancer markers and the subsequent weekly chemo. She never remembered the
ongoing side effects of chemo allowing her to remain emotionally unaffected and
free of pain medication.
Janet and Joe Have a Garden
Joe’s cancerous kidney had been removed and he was slowly
returning to his new normal. A full recovery with no chemo was his future.
Kidney cancer is very often healed by simply removing the infected kidney
without any additional treatment.
“I have to do everything for her except washing her.” Joe
was sharing his frustration with the woman he had loved for 60 years. I
wondered why he didn’t wash her too.
“You know she never said no to me. Never.” He had once
privately disclosed. Were his memories of their love manifested as physical
intimacy too painful?
“She asks me the same thing over and over again. She just
can’t remember. I get mad at her and I know it’s not her fault.”
“I will come by and sit with her later.” I knew he needed a
break from his caretaker role to refuel his emotional storage tanks. And I
enjoyed talking with Janet.
“Where did you stay on your trip to Savannah? With friends?
A Hotel?” I wanted to know how her 60th High School class reunion
had gone.
“I know Tom has an extra bedroom so maybe we stayed there.
It could have been a hotel. I can’t remember.” And she laughed happily and
somewhat mischievously. I was glad she was not in one of her angry moods. Janet
could be viciously angry about her inability to cook, drive and do any of the
things she used to. She missed her old lifestyle when she could remember it.
“By the end of the year I will need to put Janet in a home.
She is getting worse and worse. I can’t take care of her the way she needs it.”
His overwhelming sadness at the living loss he was going through brought two
different feelings. ? I was very sad for his living loss and incredibly jealous
that he had had a 60 year life with a woman he unwaveringly loved.
A living loss where
your wife’s soul left her living body might be worse than sudden death. You
could see your beautiful wife looking as great as ever and know that your
partner had left the body. The person you had shared your day with for 60 years
was no longer there. Death would be a
welcomed event but I wondered if Janet passed would Joe be right behind her.
As we stand talking in the front yard I can’t help noticing
that Janet’s incredible garden was in full bloom and weed free. This was the
same garden that had gone to waste last year during her cancer recovery. Now the garden was clearly being cared for.
“I guess Janet is feeling good enough to work on her garden
again.” I assumed and hoped she was.
“She loves that garden and worked really hard for it.” Joe
seemed reserved and sullen as he spoke.
“Hi Janet.” I welcomed Janet as she joined us.
“You are back to work on the garden again. I thought I had a
chance with my garden but I will never catch you.” I was teasing but also
somewhat jealous.
“I can’t work on the garden. I don’t know what is going on
with it.” Janet balked at her memory being called for. Her head was shaking as
it often did when she felt stress.
“Joe, you are doing it aren’t you?” A wave of understanding washed over me as Joe’s love for Janet burst into the limelight. He was working the garden to hold onto that part of Janet and because he knew the joy it had brought her.
Make sure you check the links below. Take the online memory test.
One of the most disconcerting issues with caring for your aging parent is watching them become filled with anxiety and/or frightened about things that had been routine. I know a woman, we will call her Jane for this article, who broke her wrist from a fall she had while outside watering her plants. She was terrific about doing her physical therapy and her wrist recovered really well.
What didn’t recover was her feeling of freedom to walk outside and water her plants. Jane became filled with anxiety when she walked without someone else helping. She walked with her daughter for two miles at a time so she was definitely physically capable but her anxiety made her unable to walk around her house without aids.
Jane’s anxiety got so bad that she had the doctor give her prescriptions for anti-anxiety drugs. The drugs had some positive effects but she still would become immobilized with fear. The anxiety was creating memory problems and a degree of depression that limited Jane’s independence. She wanted an answer that worked for her.
The Answer
The answer came from a friend’s younger daughter. She thought that since CBD oil was finally legal in her state that maybe it could help and she devised a plan to get her to try it. First she asked for Jane’s daughters to support the attempt. This took some effort because CBD oil comes from Marijuana or Cannabis. Cannabis is not legal in Jane’s state but CBD oil is. Jane’s daughters came onboard after doing some research and went to a local store and purchased some CBD oil and an inexpensive Vape Pen or E-Cigarette.
From the first puff Jane became calmer. She even smiled and laughed. She was not ‘high’ but CBD seemed to work on her nerves and had a calming effect on her anxiety and panic attacks.
Since that day Jane’s life has changed. She has sublingual CDB oil that she places under her tongue before she goes to sleep and a Vape Pen that she carries for when she gets an anxiety attack during the day. She now sleeps through the night and any of the debilitating anxiety attacks are short-lived by taking a couple of puffs on her Vape Pen.
CBD oil is quickly becoming mainstream because it really works with almost no side effects. Read below to see how much the medical industry is now involved and endorsing it.
We recently changed my 89 year old mother’s General Practitioner to a Geriatric GP. Her improvement was instantaneous. My mother walked around telling everyone that she felt incredible and did not know why. I was puzzled too as the only thing that her new GP did was take her off most nutritional supplements and the one-a-day vitamins she was taking. It turns out that one-a-day vitamins and supplements are not good for older people. Who knew? Older people need a special doctor just like children need a pediatrician.
The other recommendation was for Neuropsychological testing. My mother immediately said “NO WAY!”. She equated the psychological part or the name with her being considered crazy or some other name people give to older persons. After a lot of back and forth she relented and endured the three hours of testing. Two weeks later we got the results, no dementia and no Alzheimer’s only some ‘cognitive decline’. Needless to say my mother was walking on air with the diagnoses as she had expected to hear something else.
What the diagnoses meant was that she was responsible for her well being. The doctor could now take steps to keep her active and they suggested volunteering, exercise, and diet changes to get her weight down. It is now important for her to stay engaged in the community to keep her mind going. She was older but not incapable so get out there and stay involved.
A major event in caretaking is taking away the freedom and independence that driving provides to your loved one. Neither party wants this to happen. The loved one sees this as a signal that their independence is gone. The caretaker sees this as another task that they must perform that use their limited supply of time and energy. It is a hardship to both.
So when do you take away the keys? I know of a situation where children stay in denial because they do not want to acknowledge that their mother is not the same as she was and they do not want the additional work and responsibility that they will have when they have to be a chauffeur. Their mother has a bad hand that can’t grip the steering wheel safely, unsteady legs, growing forgetfulness, legal blindness in one eye, and an inability to perform when under any stress and still one child remains adamant that she should be able to drive.
Her car’s transmission broke and it could be a perfect time to take away the keys and the caretaker child sees that. But the other child who lives 100 miles away and rarely visits is trying to help the loved one to buy a car even though she is 84 with declining abilities.
Do you wait for an accident that she causes or when she gets lost and you must call the police to look for her? Do you want to wait until someone is hurt? I will always err on the side of caution because I do not want to see anyone hurt or even killed. Like I said this is where you step up and do the right thing.
