Memory Lessons: A Doctor’s Story by Jerald Winakur is a must-read for all us who are caregivers for loved ones with dementias and Alzheimer’s Disease. Going Gentle Into That Good Night cannot recommend it highly enough.
This is my Goodreads review:
“What an incredible book! Dr. Winakur is a geriatric physician – old-school, steadfastly bucking against the managed care model of the for-profit companies that own medicine in the U.S. and Big Pharma, the for-profit companies who advertise magic-in-a-pill drugs directly to consumers and pay off medical providers to prescribe them – and is/was the son of aging parents, one of whom was his dad, who had dementia.
Dr. Winakur weaves the story of his philosophy as a doctor – do not harm, take the time to listen t0 and to think about each patient, we all forget, in devaluing our elderly population and shuffling them off to care facilities because we’re too busy with our own lives and can’t be bothered, that not only do we owe them our turn in the circle of life, taking care of them when they need us most just as they took care of us when we needed them most, but one day, if we live long enough, we will be them and the examples we set with our own attitudes and behavior toward them are what our children see and what they will, in turn, do to us – with the story of his family and his parents.
It is refreshing, poignant, and from the heart.
A must read!”
This is great book for all of us as caregivers. He is a doctor and a caregiver for his parents. It’s interesting to see how he deals with the same dilemmas and decisions as a son, in spite of being a geriatric physician, that we do as sons, daughters, grandchildren, sons-in-law, daughters-in-law, and spouses of our loved ones.
Exercise and fitness are important aspects of life and are beneficial for everyone, but particularly for our loved ones with Alzheimer’s Disease and dementias.
There has been significant research that shows that leading a life that is physically active and includes regular exercise can have a positive impact on overall health and well-being.
People who exercise regularly have improved levels of general cardiovascular health, stronger bones and, therefore, a reduced risk of osteoporosis. They also tend to sleep better at night and have improved strength and balance, which can reduce the fall risks for our loved ones with dementias and Alzheimer’s Disease.
Exercise has other wonderful health benefits too. Any level of regular physical exercise can have a positive impact on emotional health.
Listed below are a few simple exercises for our loved ones with dementias and Alzheimer’s Disease.
Exercises Using A Chair
Seated exercises are ideal for our loved ones with dementias and Alzheimer’s Disease since they tend to have stability issues. Additionally, chair exercises are a great way to begin getting more physically active if our loved ones haven’t been for a while.
Seated exercises can help to build and maintain essential muscle strength and balance, but they are much less strenuous than standing exercises and reduce the risk of falls and/or injuries.
It’s important to use a sturdy chair with a back (I would recommend one that’s roomy with arms to prevent our loved ones from falling off sideways) for seated exercises and for us to be close by to assist if need be.
With our loved ones with dementias and Alzheimer’s Disease, it’s important to take the time to do these exercises at their pace. This includes taking the extra time to patiently coach – without expecting perfection in execution or repetition, with “good enough” done safely being “great.”
It would be ideal to begin each exercise session by breathing in as deeply as possible and then breathing out gently (if our loved ones are able to lift their arms to the side while doing this, it will help increase lung capacity, but if not, that’s okay).
We may have to coach and show our loved ones how to do this, doing the breathing exercises with them to encourage them to follow our example. Repeat this up to a maximum of ten times.
1st exercise (shoulder rolls): Lift the left shoulder up, then take a deep breath in. Breathe out as the shoulder drops. Then, lift the right shoulder up, then take a deep breath in. Breathe out as the shoulder drops. Alternate between the left and right shoulder up to ten times.
2nd exercise (neck strength): In the same sitting position, tilt the head back. Following the same breathing pattern as before, breathe in as the head is tilted back, then breathe out the head moves forward. Then, breath in as the head is turned to the left and breath out as the head is turned to the right. Repeat, alternating between back and forth and left and right up to ten times.
3rd exercise (sitting march): Pace can be as slow or fast as is comfortable. Lift the right knee up and breathe in; put that same foot down and breathe out. Repeat the same process with your left leg. Alternate between left leg and right leg up to twenty times.
4th exercise (leg stretches): Extend the left leg fully, breathing in as it’s extended, and breathing out as it is bent. Repeat with right leg. Alternate between left and right legs up to ten times.
5th exercise (ankles): Cross the left leg over the right leg, and rotate the left foot. Then, cross the right leg over the left leg, and rotate the right foot. Alternate between left and right foot, breathing rhythmically throughout, up to ten times.
Exercising to music can make the activity a much more enjoyable experience. Since listening to music can also be beneficial in many ways for our loved ones with dementias and Alzheimer’s Disease, incorporating music into daily activities like exercise makes perfect sense in our overall care strategy.
This is a guest post by Helen Bowden, fitness trainer and nutritionist with experience in dementias and Alzheimer’s Disease
This post includes an excerpt from chapter 15, which gives comprehensive information on how to walk the last step in the journey through dementias and Alzheimer’s Disease, which is the one that we’ll take alone without our loved ones: grief.
There is no right or wrong way to grieve. There is no time limit on grief. Grief is a process and the reality is that there will always be a hole in your heart when you lose a loved one.
Grief is also complex and complicated. We not only grieve for the loss of our loved ones, but we also grieve for all that intertwined their lives with ours because we recognize that part of our lives is over in this life.
And part of the grief process is sorting through those intertwined lives, the good, the bad, the ugly, as we reflect deeply on our time together.
Some people are able to stuff the hole of loss with busyness and lots of people and lots of things and it seems like they just picked up and moved on without blinking. They didn’t, but it looks that way.
Other people move through the process of scabbing the wound of the hole of loss more slowly, in spurts and stages that at times seem interminable and like they will never end. But it does and eventually, they find a way to move on as well.
You will find that the grieving process will tell you a lot about the people who are around you in your life.
And because death and grief necessitate one of life’s major reset phases, which includes a period of purging (not all on our part) – usually for the better, although it’s incredibly painful at the time – part of that reset phase extends to the people who are around us in our lives.
We find out who the people around us are and what we mean to them during this period.
And, although it may be sad and surprising, depending on our temperaments and personalities, many of those people will exit your life if you don’t meet their expectations and time limits on what acceptable grief looks like.
We have to accept that they were never there for the long haul to begin with.
A very small group of a few other people will hang in there with you every step of the way and beyond.
That’s your inner circle. Love them. Cherish them. And do the same and more for them as life happens to them. They’re not going anywhere. You’re not either.
Excerpt “Chapter 15: ‘I Have a Lock of Hair and One-Half of My Heart’”
“Death and its aftermath is the last step of this journey through dementias and Alzheimer’s Disease and it is a step that we take without our loved ones.
It is often said that in these neurological and fatal diseases that we experience death twice. The first death is the loss of the loved ones we knew before these diseases. The second death is when our loved ones take their last breath.
If hospice is on board, the first phone call we make is to them. A nurse will come out and confirm death. Hospice will also contact the funeral home and will prepare the body for transport. This includes cleaning and dressing (I actually helped our hospice nurse with this).
When the people from the funeral home get there, they will make an appointment to come in and make burial arrangements (usually the next day) and they will take the body to the funeral home and start the embalming process.
Once the funeral home people leave, the hospice nurse will collect and destroy any remaining medications and there will be paperwork to sign both to confirm the medication disposal and to end hospice services.
It’s a flurry of activity that lasts several hours, and I personally found that to be just what I needed because the reality that Mom was gone was still sinking in.“
This post includes an excerpt from chapter 14, which gives comprehensive information on how to acknowledge, recognize, and respond to the fourteenth step in the journey through dementias and Alzheimer’s Disease: the end of life and death.
As we near the end of the journey we’ve shared with our love ones, this is the last step we will take with them. This chapter talks comprehensively about how to do that with love, with gentleness, and with kindness.
Excerpt “Chapter 14: ‘As the Final Curtain Falls Before My Eyes’”
“This step is the next to the last step in the journey that our loved ones with dementias and Alzheimer’s Disease take. It can be a lengthy step of months or a short step of weeks or a shorter step of just a few days. Regardless of the amount of time, though, this step is harder, I believe, on us than it is on our loved ones.
This step is a two-process step: the body begins shutting down in the first process and active dying occurs in the second process.
One of the first signs that the body is beginning to shut down that we’ll see with our loved ones with dementias and Alzheimer’s Disease is that they will start sleeping a lot more.
This usually begins a few months before death occurs. Often, this is a pattern of an hour or two of wakefulness followed by naps and dozing on and off during the day, with fatigue setting in early in the evening and a full night’s sleep ensuing.
In short, our loved ones will be asleep more than they are awake.
Another sign may be a decreased desire for food and drink. It is important to not to try to force food and liquids on our loved ones with dementias and Alzheimer’s Disease if they don’t want them. As the body starts its elaborate shutdown process, there simply isn’t a need for much nourishment. Additionally, because our loved ones are not very active, they don’t burn a lot of calories nor do they need as much sustenance.
However, what is also likely to happen is that our loved ones will want or need nourishment at odd times of the day (not necessarily a normal meal time), and when they do, try to keep food and drinks healthy and light (easy to digest).
Often, during this time of shutting down, our loved ones with dementias and Alzheimer’s Disease will, when they are awake, both sort through their lives and work to make peace with anything in their pasts that they believe is left unsettled.“
This post includes an excerpt from chapter 13, which gives comprehensive information on how to acknowledge, recognize, and respond to the thirteenth step in the journey through dementias and Alzheimer’s Disease: ensuring that our loved ones always know that we love them and are committed to them all the way.
Although showing our love and commitment is something we do throughout our lives with our loved ones, this step is another conscious one that we need to practice as these neurological diseases progress and our loved ones seem to begin to disappear and we can bogged down as their care needs increase. There is never not enough time for love.
“At this step, and indeed throughout the entire journey of dementias and Alzheimer’s Disease, we must always make sure that our loved ones know the we love them, we care about them, and we are committed to them.
As our loved ones become more dependent on us and as they lose cognition and neurological function, they often become fearful. Their fears include being isolated, being abandoned, being a burden, and being in the way. For those who are still able to communicate at this step, much of their conversations with us will include these fears.
It is our job to allay those fears and remind our loved ones with dementias and Alzheimer’s Disease that we’re on their side and we’re not going anywhere. Spending a lot of time with them becomes more critical at this step as do what we do with our loved ones during that time together.
How can we demonstrate our love, our commitment, our care and our concern in tangible ways?
One of the most reassuring things that we can do for our loved ones with dementias and Alzheimer’s Disease is to spend quality time with them. This is not just spending time, but it is time where our attention is completely dedicated to them.
While quality time can include some sort of fun or interesting activities, more often than not, it is just being with them and listening to them, interacting with them, and giving them our undivided attention.”
This post includes an excerpt from chapter 12, which gives comprehensive information on how to acknowledge, recognize, and respond to the twelfth step in the journey through dementias and Alzheimer’s Disease: maintaining the dignity and as much independence as is safe for our loved ones as they become more dependent on us.
This is so critical – and, unfortunately, often overlooked or forgotten – that it must be recognized as a conscious step that we as caregivers must take and must always remember as we go through this journey with our loved ones.
Excerpt “Chapter 12: ‘Help Me Live With Dignity ‘Til the End’”
“As our loved ones with dementias and Alzheimer’s Disease progress through their journeys, they reach this step where their dignity and their independence could be compromised. It is our job to ensure that we preserve their dignity to the end and ensure as much independence as is safe to the end.
Dignity is something that all human beings should have until they take their last breath. This includes respect and honor toward them, no matter what circumstances they may find themselves in. It is no different for our loved ones with dementias and Alzheimer’s Disease.
In addition to dignity, it is also important for us to ensure that our loved ones have as much independence – guaranteeing safety at all times – over their own bodies and their own care as they are able to handle.
It will take them longer and everything may not be perfect, but as long as our loved ones with dementias and Alzheimer’s Disease can participate in their care, their lives, and our lives safely, the more happy and satisfied they will be and the more dignity and honor we will be showing them.
What does this look like in practice?
Incontinence and toileting
When our loved ones reach this step, we may begin to have to help them with toileting. Generally, urinary incontinence is the first toileting issue we encounter. This may be due more to age and medication than the actual loss of urinary continence, so our loved ones will likely know they need to urinate, but just not be able to make it in time.
We want the transition to adult incontinence clothing to be as easy and stigma-free for them as possible, so we should treat the clothing, accidents, and any other issues we encounter with no fuss and calmly and normally.”
This post includes an excerpt from chapter 11, which gives comprehensive information on how to acknowledge, recognize, and respond to the eleventh step in the journey through dementias and Alzheimer’s Disease: medical care and medical advocacy.
This chapter discusses the importance of having legal documents in place early that designate power of attorney, medical wishes, and end of life care as well as the role we have in advocating for our loved ones’ medical needs and wishes and offers practical, real-time, and loving ways we as caregivers should respond and help our loved ones as we travel this step in the journey.
“As our loved ones progress through dementias and Alzheimer’s Disease, medical care will become a more central and ever-present part of the journey. It’s important that we understand this and are prepared in every way possible to become team leaders and advocates for our loved ones to ensure that they receive the right care, the best care, and, as much as they are able, are actively involved in medical discussions, decisions, and care.
At this step of the journey, it is too late to determine finite boundaries of care and to create legal documents designating powers of attorney, living wills, and Do Not Resuscitate (DNR) orders because our loved ones are not considered competent to make these kinds of decisions.
So it is imperative that these decisions and documents are discussed, if not well in advance of the initial signs of dementias and Alzheimer’s Disease, at least in the earliest stages, when our loved ones can decide what they want and convey and formalize those wishes.
In fact, we all should do this, no matter where we are in life. We should have wills, living wills, DNR’s (if that’s what we want). We should talk to the people that we designated to ensure our wishes are fulfilled and let them know that they are responsible and what we want and don’t want.
In addition, someone should have all our financial, insurance, and digital (online access to bank accounts, email accounts passwords, revenue accounts like Amazon and eBay, etc., blogs access are a few examples) information.
It’s important to understand that this does not mean they have or need access to our money or our stuff. Generally this person is going to be the power of attorney for our healthcare and finances (there are legal documents to create and designate these) anyway, and we are the ones who determine when control of our stuff gets turned over to them.
Therefore, it’s important to pick someone we trust and it’s important to review those documents from time to time to ensure that all the information is updated. People get divorced. People die. We add and we drop banks, policies, jobs all the times. Make sure your legal documents reflect all of these.”
This post includes an excerpt from chapter 10, which gives comprehensive information on how to acknowledge, recognize, and respond to the tenth step in the journey through dementias and Alzheimer’s Disease: more frequently going back in time (long-term memories) and losing connection with the present (short-term memories and recognition of loved ones).
This chapter discusses why this step occurs and offers practical, real-time, and loving ways we as caregivers should respond and help our loved ones as we negotiate this step in the journey.
“The next step in the journey with our loved ones with dementias and Alzheimer’s Disease can be difficult to comprehend and adjust to, since it usually appears randomly and unexpectedly. This step is where our loved ones seem to frequently go back in time in memories, in conversations, and in thinking and they often don’t recognize us or know who we are.
I first read Katherine Anne Porter’s The Jilting of Granny Weatherall in high school. It is the story of an 80-year-old woman who has dementia and/or Alzheimer’s Disease. Neither of these names for neurological impairment existed, however, when Porter wrote this short story in 1930. Instead, elderly people were just ‘senile.’
The story made a strong impression on me even as a teenager, even though I never had steady and intimate contact with elderly people (both my parents lost their parents when they were very young and, as only children who were much younger than their cousins, had no aunts and uncles except one on my mom’s side left by the times we kids came along) and had never seen anything that looked like dementias and Alzheimer’s Disease.
I found Granny Weatherall fascinating and I found the juxtaposition of where she was in her own mind versus what was actually going on around her intriguing.
This post includes an excerpt from chapter 9, which gives extensive information on how to acknowledge, recognize, and respond to the ninth step in the journey through dementias and Alzheimer’s Disease: balance, stability, and falls.
This chapter discusses all of the reasons that the neurological damage of these diseases affect balance, stability, and lead to an marked increase in fall risks and actual falls.
This is the ninth step in the journey through dementias and Alzheimer’s disease.
This chapter also discusses practical, real-time, and loving ways we as caregivers should respond and help our loved ones as we negotiate this step in the journey.
“While many of our loved ones with dementias and Alzheimer’s Disease are in good shape physically when these diseases begin to manifest themselves, they eventually reach this step of the journey where there is a great risk of falling. Attached to this risk is the possibility of broken bones – especially hips, which may be so badly damaged that our loved ones become confined to wheelchairs or bed for the rest of their lives – and head injuries, which can be fatal.
The reasons that our loved ones are increasingly susceptible to falls are:
Gait changes are common as dementias and Alzheimer’s Disease progress in our loved ones. One of the most characteristic gait changes is shuffling. This is especially pronounced in our loved ones who have Lewy Body dementia and Parkinson’s Disease, but it becomes a feature of all dementias and Alzheimer’s Disease by this step of the journey.
Shuffling is when our loved ones don’t pick their feet up off the floor to take steps, but instead slide them across the floor to move forward. One of the inherent dangers in this is catching the front part of shoes on the floor – especially carpet – and falling forward.
Shuffling can be both a result of neurological impairment – not remembering how to take normal steps to walk – and muscle weakness from lack of use.
The most important thing we can do for our loved ones with dementias and Alzheimer’s Disease to help minimize shuffling is to have a physical therapist on our care teams to help regain muscle strength and work on gait normalization. Additionally, if possible, we should be helping our loved ones maintain muscle strength and walk with them daily encouraging them, both by example and by instruction, to use a normal stepping gait to walk.”
This post includes an excerpt from chapter 8, which thoroughly discusses how to acknowledge, recognize, and respond to the eighth step in the journey through dementias and Alzheimer’s Disease: wandering and wanting to go home.
This chapter discusses in-depth the reasons that wandering and wanting to go home are part of the eighth step in the journey through dementias and Alzheimer’s disease. It also discusses practical, real-time, and loving ways we as caregivers should respond and help our loved ones as we navigate through this step in the journey.
“Wandering is the next step of the journey our loved ones with dementias and Alzheimer’s Disease go through. Wandering can be characterized by endless walking within the safety of a house or facility, but more often it is characterized by going outside and either walking or driving (if our loved ones are still driving) aimlessly until our loved ones are lost and either can’t or don’t know they need to or how to come back.
There are many stories of elderly people with dementias and Alzheimer’s Disease who were wandering on foot or in a vehicle who died before they could be located. These people have been hit by vehicles while walking in the middle of the street, walked into woods and gotten lost, or have driven vehicles off the road over embankments or into bodies of water.
Often, the impulsive nature of wandering – a sudden need to be stimulated or being on a mission to go somewhere or find something – leads our loved ones with dementias and Alzheimer’s Disease to just pick up and go, often without adequate clothing in cold weather, and often in the middle of the night.
Wandering may be tied to visual hallucinations as well, especially if the visual hallucination is of a loved one. When that person leaves, our loved ones may want to follow and go with them.
However, the main impetus of wandering seems to be rooted in the desire to go home. Our loved ones with dementias and Alzheimer’s Disease begin talking frequently about wanting to go home – even if they’re in a home they’ve lived in for many years – and wanting to find loved ones, many of whom have been dead for years.
It’s important to understand the context of where our loved ones with dementias and Alzheimer’s Disease are neurologically and memory-wise. While dementias and Alzheimer’s Disease affect short-term memory and inhibit new memories from being formed, long-term memories are and stay, for most of the duration, intact. And those long-term memories are where our loved ones begin spending a lot of time.
Therefore, home, for our loved ones is most often their childhood or early adulthood homes, and those homes and the people who were there are what our loved ones are looking for and where they want to go.“