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“I don’t know if I want to go on without her.” Joe is condensing to me. “The last six weeks of her life were a horror. Even with all the pain killers.”
Jane is Gone
“My daughter is crazy. And her kids are too much.” He says right off.
“She was a great woman.” I know my attempts to comfort him are futile. They were married more than fifty years.
“She was. She wasn’t like me. Everyone loved her.”
“Yes they did. I remember the lunch she rewarded me with after helping her buy a new computer. She didn’t want to go to Joe’s because some of her coworkers were there and they might think she was up to something.”
He laughs. “She was always faithful. She kept me in line. I think I might sell the house and move to Colorado to live with my daughter.”
“Will that work? Maybe you can go and spend a week with her to check it out.”
“I’m going next week.”
A month later I meet him cleaning his antique car in his driveway.
“Wow! You need to get used to each other.”
“Maybe I’ll move to Savannah.” He has been crying.
“I don’t want to mess you up but I’m glad if you stay. If going is better for you I’ll miss you.” The prospect of him leaving suddenly hit me.
“My life is here and my friends.”
It is now a year later. Joe has decided to share his house with a lifelong friend who needed a place to stay. On occasion we reminisce about Jane but more often than not we chat about the future.
“Are you going to at least get out of the car?” Jessica, my 32 year old daughter, was sitting in her white SUV with the AC running and the window down.
“You know I run around with my friends some.” She had a one bedroom apartment right next to her lifelong friend. She had to work and visit customers. Even though she maintained her distance and always wore a mask she was worried.
“I wish I could give you a hug like we used to. I know this will end but I’m getting tired of it.” My 67 years had not prepared me for this.
“I would feel really bad if you got it and we hadn’t been careful. I might never forgive myself.” She was voicing what we both knew to be true.
In this age of Covid-19 virus everything had changed. Many people just ignored it and were spreading it around. We had been warned by the scientists and doctors but many just didn’t care. I was glad Jessica did.
I sat down on the grass and she stayed in her SUV. We talked about all of the normal things going on in our lives and 15 minutes later we gave each other a Covid hug. A Covid hug was where you each reached your arms out like you were wrapping them around each other… with ten feet of air between you.
The pandemic had messed up family life. It seems like seniors were found to be dispensable and dying at an alarming rate. I was glad I was not in a nursing or senior home because they were seeing stunning amounts of death. Jessica and her friends were supporting me and my fears.
So just how do you see your children safely? We all have seen the pictures of seniors locked up in their senior home looking out the windows at their children. That is one way of having a Covid meetup.
The CDC have guidelines they approve. The CDC says if you are outside with a mask on and stay at least six feet away you should be alright. They have also added that you should keep the meetup to under 30 minutes. Strange but definitely something you can do.
The pandemic was everywhere. Joe, Jane and I had been practicing social distancing but our friendship meant that we would still talk. It would just have to be outside from 20 feet away. This afternoon had Joe sitting in his car with the window down while I lounged on my grass just passing time. I suddenly remembered Jane’s cancer.
“How is Jane doing with chemo?”
Joe paused for a little too long and composed himself.
“Not good.” Was all he could get out as his jaw tightened up and he looked away, hiding his face.
“What do you mean? Is she still getting chemo?”
“She has been but the doctor just had a conversation with me today. Not good.” He repeated.
“They told me that she could have ten years if she does chemo but it would be bad. If she doesn’t do chemo she gets five years.” I could see the strain on his face.
“They want me to decide because she can’t. She still can’t remember what she ate for lunch. I have to tell them what I want to do.”
“I’m glad I’m not you except that Jane is awesome even if she can’t remember things. You were lucky with her. I don’t know what I would do. How bad is it going to get?” Boy did that sound stupid. One side of me was jealous of their 58 year marriage. How amazing would it be to have been that in love and committed to each other?
“Bad either way. The chemo makes her lose her hair and really sick. Without chemo it will get worse and she will hurt but not be as sick. With her forgetting everything and asking me stuff over and over again what are five extra years?” I think he had decided already.
I watched as a mother bird flew towards the nest she had built under my garage overhang. I knew he had to talk to someone. I also knew that with the Covid-19 stuff we hadn’t spoken much lately. I wish we could, but the reality that I am over 65 and so are they meant it was really important for neither of us to get sick. Getting sick with Covid-19 might be an immediate death sentence. The robin landed and began dropping a worm into one of her newborns. Life goes on one way or another.
“I wish I could help but I’m really being careful with the quarantine. I hope you two are too.” I saw that he didn’t care about living. He didn’t see any good future now that Jane’s mind was leaving her body. She looked as good as ever to Joe but slowly her companionship was disappearing. Joe would not last long once she was gone. He would not want to live one day more than she did. I knew his plans and hoped to be able to prevent them.
“Do you want to come for dinner this week?” Joe was really dismissing the reality Covid-19 had brought on us. Or maybe he just didn’t care one way or the other. I did care and wanted every day I could get.
“I’ll see if my daughter will let me but I don’t think she is going to let me out.” My daughter had been staying with me and holding me accountable. She was a good excuse and I was not going to take any chances.
“Alright.” Joe started the car. “Maybe we can do your next door neighbor’s roof. She has a big leak.” Joe wanted everything to go back to yesterday. No one can turn back the clock no matter how much Joe wanted to pretend everything wasn’t happening.
“See you later.” I had to let him go without my help. Covid-19 had messed up a lot of friendships. And changed all of our lives. I could tell that Joe knew he and Jane’s lives were already written and nothing was going to change that. His acceptance was painful to me and left me wondering what I would do when it was my turn.
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.
On a cold October night my doorbell rang. Not a usual occurrence.
It was Joe, an aged, very hard headed, multi gun owning neighbor. I had known
him for the 30 years I had lived in my house but this was the first time he had
ever stopped by after 9:00pm.
Married for More Then 50 Years
“I need to talk to you.” He entered the house. I motioned
for him to sit but he just paced back and forth.
“It’s Janet. She has cancer and I don’t want to live if she
is gone.” Janet was 77 and Joe was 80. They had been married for over 50 years
and they still loved each other. John would go after anyone who made noise or
cursed within Janet’s hearing distance. I mean he had actually brought out a
pistol and threatened a young man who was drunk at a party a few houses from
their house.
“Just what type of cancer does Janet have and what did the doctor say about it?” I became worried that this could have a bad ending. I didn’t believe it would happen this week or this month but Joe’s thinking was not good.
“She has female cancer and she needs surgery and then chemo
therapy. I have to take her to her doctor next week and then they will schedule
surgery.” He kept pacing and I offered him a drink. Not alcohol because Joe
does not drink. And Janet had been the administrative assistant at the nearby
Catholic Church for almost 30 years.
“What can I do to help?” I asked with what I must admit was
sorrow and fear about their situation and mine. This was uncharted territory
and while I appreciated that Joe was trusting me with this and felt a strong and
trusting bond with me, I did not understand my own feelings. What if she passed
away?
I decided to just let him talk and listen to what he was
going through. I did not offer any advice because frankly I didn’t have any. I
did believe that going to the doctor and doing whatever they asked you to do
was a good thing. I needed to go online and see what I could learn about it.
I made up my mind that the next day I would go and visit with Janet and see how she felt. I wanted to help but felt lost. I would just have to ‘show up’ and listen. Thankfully there is nothing to prepare you for this so I guess I would just do the best I could.
I am going to post more as this continues down its path so stay tuned. Don’t forget to check the links below for more helpful information.
My brother was visiting my mother and I took the opportunity to go out for dinner with a close friend. During cocktails I mentioned that my mother was having more and more difficulty with her memory to which my friend replied “Everyone forgets things. I am always misplacing my car keys.” I felt completely alone as the air rushed out of me. He had just dismissed my observation as an over-reaction that was not something to be concerned with. I felt marginalized. Didn’t he realize that I wasn’t talking about normal memory lapses? If it was normal I wouldn’t have attempted to share what I was going through.
My friend’s reaction was well intended and he meant to provide advice when all I wanted to do was share a very real change in my mother that I was dealing with and have it acknowledged. Think of all the times we have had reflexive responses; ‘You will get another job’, ‘You were lucky. It could have been worse.’, or ‘Time heals all wounds’. In my case I have heard them all and they all made me stop sharing and feel really alone in my caretaking. I wanted someone to say ‘I understand, tell me more’ or ‘that must be very difficult to deal with’ to let me know they were there for me and knew the challenges I was wrestling with. Remember, when someone is working with a problem and you want to support them, acknowledge and listen without providing unsolicited advice.
Memory and How to Maintain It
Memory loss is a real issue and manifests in many ways. One of the strange things about the aging memory is that the senior might remember events from 40 years ago in great detail and not know what they had for breakfast. This may make you believe that their memory is fine when careful monitoring is called for. Check to make sure that cooking surfaces and garden watering hoses are turned off. Keep your own record of their appointments and any regular medicines they must take. What did they eat for breakfast or dinner? There are many sites that can provide memory tests to help you know if there is anything that needs following.
The more engaged the brain is the healthier it will stay. Crossword and picture puzzles, reading, and stimulating conversation all help. I know a senior woman who follows the news avidly and loves to talk politics. Physical activity promotes blood flow to the brain to keep brain cells healthy so consider a 30 minute walk at least three times a week. Keep them involved in the community with relatives and friends for more mental stimulation. A senior is old but not incapable. Let them help with cleaning and cooking and continue to be a contributor to society. They will thank you for it.
At the beginning of September my mother passed away. I had stopped home to pick up some things at lunch when I heard what I thought was an awful song on the radio. I searched and then discovered my mother on the floor incapacitated by a massive stroke. I called for help and she ended up at the local trauma center where doctor’s finally agreed that at 90 1/2 years of age there was nothing they could do for her.
I arranged to have her transported to a beautiful hospice and summoned my seven siblings and their children to her bedside. Everyone came immediately and she passed with six of her grandchildren in various stages on her bed. One was brushing her hair. Another held a cup for her to sip Coke. Several were stroking her arms and massaging her feet. Over 20 of her direct descendants were there. It was exactly how she wanted it… quick, painless and her loved ones at her bedside.
Everything went very smoothly because she had taken the time with my prodding to clearly write out her exact wishes. When we sat down to put her wishes on paper it was often traumatic, argumentative, and simultaneously calming. I now know that completing her will and medical directive were the best things I ever did for me and my mother.
The doctor’s at the trauma center were clear that I was a lucky one because all I had to do was follow her directive. He bemoaned the fact that most people fail in this because it is too uncomfortable and then when the end is near they are left arguing and fighting. The lesson is to take the time and energy to have a medical directive that clearly states every contingency. We were able to grieve and stay bedside because we did not have any decisions to make when we were so emotional.
To this day when something of importance happens I want to call her and tell her about it. It is all a part of grieving. The hospice provided information about grieving that was a help. I noticed that everyone grieves in their own way and sometimes I did not feel comfortable with other people’s comments even though I knew that they were given thoughtfully. It is difficult for those who care about you because there is no training class for dealing with a loved ones passing. But there are many groups that offer support after a loved one passes and it is fine to take advantage of them.
Here are a few helpful links to sites that offer information and help:
One of the things that all caretakers have to deal with are vision changes. It all starts around 40 when eyes begin to lose elasticity making it difficult to read books and newspapers. This loss of elasticity makes the eyes have changes in vision all through the day. You will often need 2 or 3 pairs of glasses for long distance vision, computer distance, and book/newspaper distance. As you enter your 60s it becomes necessary to find a different eye doctor than you will find at a neighborhood glass shop.
With this in mind my mother had to progress to the Emory Eye Clinic doctors for glasses. She had already been receiving eye shots for macular degeneration from a macular specialist and glaucoma treatment, (eye drops), from a glaucoma specialist. All of those problems created changing vision and a loss of vision in the left eye that were making it hard for her to keep her lifestyle.
We had to change to more advanced treatment than available from the local eye-glass store. We made visited a specialist who then recommended the Low Vision doctors at Emory. We had already changed the light bulbs to ‘Daylight’ LED bulbs as recommended by her macular degeneration doctor. These bulbs really helped because they have high contrast.
What we are trying to do is make sure that she can live her life as close to normal as possible. Make sure you stay on top of the vision issue because there are treatments and special equipment that can keep their QOL (Quality of Life) excellent.
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.
Every time my mother has a change in her status I feel responsible to update my 7 siblings about her condition. The first comment from each when I told them her memory was getting bad was “Everyone forgets things” like I didn’t already know that. Another comment is “I am so busy” , which means ‘everything else I am doing including surfing the internet is more important’.
And still another comment is “I spoke to her on the phone last week and she sounded fine”. All of these comments make it alright for them to stay away and not help because if she is OK then she doesn’t need help. If they bothered to visit for a couple of hours they would see that she is no longer fine.
When I attempt to explain what the doctor’s tell me and what the doctor’s recommend I am given a lecture on the proper treatment they discovered surfing the web. They add that the doctor’s do not know what they are talking about even though she is going to a geriatric specialist who only treats the elderly. And then they phone our mother and tell her not to do what the doctor said based on their 5 minutes of web surfing.
All I wish is for them to help and relieve me for a few hours so that I can have a break. If they would commit to some sort of schedule it would even be better. Then I could also schedule some free time to meet up with friends for dinner. A schedule is also better for my mom so that she knows what to expect. Surprises are not always good for her.
I believe that I am making a mistake by being proactive with her status updates as it seems to create more of a divide between them and our mother. If they are interested then I will answer their questions but trying to have them help in her caretaking by keeping them aware of her condition has not worked. Often is has made it more difficult to give her the care she needs because of their objections to her doctor’s recommendations.
