Tag Archive | Caregiver

Insights: How Life Experiences Factor Into Dementias and Alzheimer’s Disease

Life experiences are factors in dementias and Alzheimer's DiseaseThis post begins a series that provides us as caregivers a perspective into the behaviors of our loved ones with dementias and Alzheimer’s Disease that I’ve never seen discussed anywhere else. 

I’m a big-picture person. I believe that there are tangible connections among things for everything and everybody.

In other words, nothing is random, even if it appears that way. There’s a logic to everything and everybody. However, the only way to find the order and the logic is to back away from the immediate present and abandon the tendency to believe that it exists in a vacuum.

Nothing and nobody exists in the vacuum of a moment in time. Everything and everybody is the sum of their parts over a continuum of time.

By looking at the whole picture of our loved ones’ lives – life experience, temperament, and personality/quirks/flaws/foibles (which we all have, by the way) – we can gain insight into how those factor into the behaviors we see in their journeys through dementias and Alzheimer’s Disease.

Knowledge is power in this case. Because if we understand what factors of a lifetime are driving the behaviors we see, then we can find ways that are beneficial for us and for our loved ones to respond to those behaviors.

I will be the first to admit, from personal experience, getting our responses consistently right is not easy and, at times, because our own emotions (especially as children or grandchildren dealing with parents and grandparents where the landscape, even in the best of circumstances, is complex and complicated) are intimately involved, we will fail. We will fail miserably.

But, as with anything else in life, we have two choices after we fall flat on our faces. We can either quit in defeat or we can get up and try again with more resolve to move forward successfully.

It’s my opinion that a substantial part of the fatigue that we experience as caregivers for our loved ones with dementias and Alzheimer’s Disease is not physical, but instead emotional and mental.

And the resolve to not quit emotionally and mentally in going through this journey with our loved ones is a significant contributor to that fatigue.

Do it anyway. For them and for ourselves. Because when we stand alone at the end of this journey we will find out that we gained more than we lost.

We will know ourselves better than most of us probably really want to know ourselves.

We will find strengths that we didn’t know we had. We will be surprised at our endurance and the levels of adversity we had to persevere through.

But we will also find our weaknesses and we will see our shortcomings. A lot of these come to light in the years that follow the journey through dementias and Alzheimer’s Disease. They come to the forefront of minds slowly as we consider and reflect on the journey.

As painful as that is – and it is very painful – it is positive. Because once we see areas where we need to change, we have the opportunity to change. We have the opportunity to continue to reap the benefit of growth.

That’s why I personally advocate remembering, examining, and considering the journeys we’ve been through with our loved ones. Some people are not able to do that and that’s okay, but personally for me, it has been an unparalleled period of change and growth in my life.

Life experiences factor significantly into the behaviors of our loved ones with dementias and Alzheimer’s Disease. 

Because short-term memory is impacted more than long-term memory and the core of our perspectives on life are formed during the early years of our lives, the life experiences of the first twenty years of our loved ones lives seem to drive some of the behaviors we see.

For example, my mom’s mother died when she was three days old. Her 78-year-old grandmother and 80-year-old grandfather immediately took Mama and her dad – an absent binge drinker under stress (he disappeared for several days after his wife died while the maternal and paternal grandmothers fought over custody of his daughter) and a World War I veteran whose lungs had been permanently damaged in a mustard gas attack in France – into their lives.

Although Mama was loved, it was an unsettled start to life with constant moves and frequent absences of her father (hospitalizations at the VA hospital, drinking binges, and a few arrests for public drunkenness). 

Mama - 6 years oldWhen Mama was five, the fragile environment of love began to disintegrate.

Her grandfather, her best friend and trusty ally, died. A year later her father succumbed to pulmonary disease.

The memory that haunted her most of her life was the 30 minutes or so before her father died. He told Mama he wanted to talk with her, but she wanted to go outside and play with her cousins. Her father kissed her and said, “Go ahead.”

That was the last time Mama saw her father alive and her guilt over not knowing, because she was six years old, that he was dying and not staying with him when he wanted her to followed my mom all her life.

Shortly after her father’s death, Mama was sent away from the family she knew and loved to live with an aunt she didn’t know and who didn’t want her. For the next 12 years, Mama endured hell on earth. She was all alone in the world. She was mistreated, lied to, and stolen from.

Mama having fun with her grandkidsMama finally escaped and was able to overcome a lot of adversity to become an incredibly accomplished woman and the mother that I loved with all my heart, the wife that my dad cherished and was completely devoted to, and the friend that so many people loved and cherished.

But the road to becoming those people was strewn with a battle to overcome fear, anger, resentment, and bitterness, which Mama finally did in late middle-age. But the one thing Mama never completely overcame was her suspicion that people couldn’t be trusted and, given the opportunity, they’d take advantage of her.

When Mama’s dementias and Alzheimer’s Disease were in full bloom, those life experiences of her first 18 years were primary factors in her behaviors.

The loneliness came back. The fear came back. The anger came back. The bitterness came back. The resentment came back. In full force.

And her normal tendency toward being suspicious of everyone as a possible threat to take everything away from her blossomed into a full-throttle paranoia that I wouldn’t have believed unless I’d been the one who’d seen it and been on the receiving end of most of the time.

All of these things took me by surprise because they all came at once in high gear. I was overwhelmed and unprepared emotionally and mentally to deal with the onslaught.

At first I blamed myself. I kept wondering – and looking for – what I had done or said to trigger Mama’s behaviors. Every place I even thought there was a possibility that something I’d said or done was the trigger, I changed immediately.

But Mama’s behavior didn’t change. In fact, it got worse.

It was hard not to take it personally. There were many times when I’d walk away to defuse the situation and just sob because I didn’t know what to do and I couldn’t help Mama.

But I thought about the whys of Mama’s behavior day and night as I searched for answers and ways that I could help. And in the process, I found compassion, empathy, and patience.

Why? Because I realized my mom was that scared six-year-old little girl who had her whole life ripped apart and thought she was all alone in the world. And that six-year-old girl knew what lay ahead in the next 12 years of her life and she was determined not to let it happen this time because all of the emotions associated with that were front and center.

My understanding of how my mom’s life experiences were factors in her dementias and Alzheimer’s Disease gave me insights into why she was doing what she was doing and into ways that I could tangibly quiet her fears and soothe – not entirely – those raging emotions associated with the most disruptive time of her life.

So I urge all of us, as we’re able, to go back over our loved ones’ lives and see where the connections are, even as far back as early childhood, that factor into the behaviors we see as they walk the journey through dementias and Alzheimer’s disease.

I promise you that it will be worth it not only for us as caregivers but for our loved ones as well.

 

The Layperson’s Guide to Revocable Living Trusts, Guardianships, and Conservatorships

Contingency Planning End of Life Planning Elderly Parents and ChildrenWhen our loved ones with dementias and Alzheimer’s Disease reach the part of the journey through these neurological diseases where they are unable to handle their own financial and legal matters, we as caregivers have no option but to step in and act for them and in their best interests.

Here in the United States, there is an incomprehensible aversion to planning for the possibility of having to entrust our lives to someone else and for how we want to die

It’s as though we have this national collective mentality that if we don’t think about it, then it won’t happen.

The bad news? No matter what, it’s still going to happen.

And someone is going to be left holding the bag – maybe the person we would have designated or maybe someone we don’t want making decisions for us – to decide for us.

If it’s a person we trust, then they have the agony of trying to figure out what’s best and what we would have wanted. This is especially agonizing when dealing with end-of-life issues.

Too many people in this position of not knowing what we want, because we refused to talk about it, prolong our suffering and run up needless bills in the process, simply delaying what would have been the inevitable outcome anyway.

If it’s a person we don’t trust, all bets are off. And it is not going to be pretty.

The time to prepare for both of these inevitables – unless we die early and truly unexpectedly (I can’t help but laugh every time I see an obituary for a really elderly person that says they died unexpectedly: suddenly, perhaps; unexpectedly, no) – is when we have the ability to and can make sure what we want to happen happens.

A Revocable Living Trust is A Good Option for Ensuring Elderly and End-of-Life NeedsFrom the standpoint of appointing someone we trust to handle our financial and legal affairs (most of us do an okay job with medical powers of attorney, but even that gets ignored more than it should), a revocable living trust is probably the best and safest way to go.

The benefits of a revocable living trust are:

  • The person creating it retains control and can revoke control at any time as long as they are competent;
  • It can be set up with a small amount of money or a piece of property in the trust and the attorney’s fee (varies by state);
  • The person creating it designates the person/people they trust to handle their legal/financial affairs;
  • It eliminates the need for a will;
  • It cannot be legally contested;
  • The process of transferring control to the designated trustee in the case of incompetency requires a professional (psychiatric) letter with the diagnosis and evidence of incompetency;
  • It, with the professional letter declaring incompetency, is the only documentation needed for the designated trustee to handle finances and legal matters.

A revocable living trust is probably the easiest way to ensure what we want both in life if we can’t do it ourselves and in death after we’re gone.

However, it is of supreme importance to choose wisely and be absolutely convinced of the trustworthiness of the person we designate to be our trustee.

The bottom line? If we have any doubts as to whether we can trust someone completely, we do not choose them as our trustee.

It will not end well for us – in fact, it could end gruesomely and tragically – and all our careful planning will have been for nothing, to put it mildly.

But what if, as many Americans do, our loved ones with dementias and Alzheimer’s Disease reach the stage where they are not competent to handle their affairs without any legal documents in place?

There are two options, and by the time this is needed, it’s likely that the petitioner (us for our loved ones or our families for us) will need both of them granted.

Both options are very costly (much more expensive than the cost of powers of attorney and a revocable living trust), often take a long time to be granted, and, in many cases, set off a family war, which not only can delay a decision, but can also create irreparable rifts within the family.

One option is guardianship. Guardianships give the petitioner the legal authority to take physical care of the loved one who is incapacitated.

The process to obtaining guardianship begins with getting a professional letter confirming the person for whom guardianship is sought is incompetent to handle their own affairs.

That letter must be taken to an attorney to have a petition drawn up to submit with the letter to the court. The petitioner is responsible for all the attorney fees (general estimates are in the $2500 to $4000 range if the petition is uncontested) and court costs.

Petitioning for legal guardianship and conservatorship is a lengthy and costly processThe court will decide – slowly – whether to grant the guardianship and the entire process can take several months at the very least.

The second option is a conservatorship. A conservatorship gives the petitioner the legal authority to handle financial and estate matters for of the loved one who is incapacitated.

A conservatorship has the same legal requirements and process as a guardianship and has the same potential problems as well. That’s why if a petitioner has no other choice but to pursue these options, it’s prudent to do both of them at the same time.

There is an additional requirement for the petitioner who is granted a conservatorship for a loved one who is incapacitated. The petitioner will have to file a detailed annual financial report for the estate to the court for review to ensure that the estate is being managed as the court sees fit.

If the petitions for guardianship and conservatorship are uncontested, they will take a much longer time and much, much more money to obtain than having an attorney draw up a revocable living trust that settles everything.

If the guardianship and conservatorship petitions are contested by other family members, it’s conceivable that the legal fight could outlast the loved one who is incapacitated and the amount of money spent to fund the fight would be outrageously high.

We may have no choice in these matters with our loved ones that we are caregivers for, but I urge each of us to consider taking care of these things for ourselves now for our potential caregivers.

We need to tell our families what we want, carewise, for longterm care and at the end of our lives. We need to choose and discuss with the person we want to ensure that our wishes are carried out. We need to get the legal paperwork done and keep one copy in our home safe or a safety deposit box at the bank and give the other copy to the person we designate to carry out our wishes.

We never know when time and chance are going to happen. Today is the day to prepare for that. Tomorrow may be too late.

 

 

After Caregiving For Our Loved Ones with Dementias and Alzheimer’s Disease Ends

Caregiver and Loved One Holding HandsFor each of us who have been or are primary caregivers for our loved ones with dementias and Alzheimer’s Disease (along with comorbid age-related illnesses), we are firsthand witnesses to the physical, emotional, mental, and financial toll it can have on us the caregivers.

But at some point our role as caregivers ends. Dementias and Alzheimer’s Disease are ultimately fatal since the brain affects every part of the body and as the neurological damage of these diseases progress, the damage spreads to the rest of the body.

As I wrote in one of the very first posts I wrote for Going Gentle Into That Good Night, we will never be the same again after being caregivers for our loved ones with dementias and Alzheimer’s Disease and other age-related illnesses.

But it’s been my observation that the caregiver experience leads us in one of two polar opposite directions after our caregiving days are over.

For some caregivers, their path after caregiving leads them toward helping other caregivers who are or will be on the journey through dementias and Alzheimer’s Disease. They do this through blogs – like this one – and books and online and offline support groups.

This path gives an added benefit to the caregivers who choose it: it facilitates the healing process and it often provides a productive journey through the grieving process. 

However, for caregivers who choose this path, they learn along the way that there are some things that will never heal in this lifetime and grieving is not a finite process. 

The benefit, though, is perspective and acceptance, even in the deeper wounds that won’t quite close up and the unexpected tears that can show up anytime and anywhere no matter how much time has passed.

Dementias AD Caregiver Stats Going Gentle Into That Good NightFor other caregivers, though, the path after caregiving is to leave it behind and shut the door on it. In most cases, this is the result of a tremendous amount of pain and loss in their own lives while they were caregivers because of the huge physical, emotional, mental, and financial toll caregiving had on them.

They don’t want to be around anything having to do with caregiving anywhere in their lives: blogs, books, support groups, or even friends and family who are or will be caregivers.

You can literally see this group of caregivers shut down and mentally check out when anything related to caregiving comes up in their lives. They physically, mentally, and emotionally walk away and never look back.

None of us knows what path we’ll choose when our caregiving days for our loved ones with dementias, Alzheimer’s Disease, and age-related illnesses are over.

And what I hope we remember is that neither path, regardless of which we choose, makes us better or worse than those who chose the other path.

For all the similarities we humans share, we each are unique creations who walk unique paths through our lives. I don’t know the details of where or what you have been through and you don’t the details of where and what I’ve been through.

So I urge each of us to be kind, to be empathetic, to be respectful to every other person who has been, who is, who will be a caregiver for loved ones with dementias and Alzheimer’s Kindness Empathy UnderstandingDisease and age-related illness, regardless of which path they have chosen, choose, or will choose.

Let’s not forget that we’ve all shared the same experience and that creates a bond between us of understanding. We should also remember that, when it’s all said and done, being a caregiver is an incredible act of love that, sadly, in our society more and more people are not willing to make the sacrifice for.

So all of us who have been, who are, and who will be caregivers are incredibly loving people who made the sacrifice, just like the loved ones we care for did with us, at, sometimes, a huge personal cost to themselves for the rest of their lives.

The path we choose afterward is often self-protective and a path toward some sort of wholeness. And that’s okay, even if it’s not the path we chose, choose, or will choose.

There is no right or wrong in the path after caregiving. It depends on each one of us which direction we take. But let’s don’t attack, don’t condemn, don’t criticize our fellow travelers in this journey because they choose a different path than we did after the journey with our loved ones with dementias and Alzheimer’s Disease ends.

 

“Memory Lessons” – Jerald Winakur: Book Review and Recommendation for Caregivers

Going Gentle Into That Good Night Book Review and RecommendationMemory 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.

Making Life a Little Easier in the Care of Our Loved Ones with Dementias and Alzheimer’s Disease – Part 3

elderly father adult son caregiver dementia ADThis is the last in a series of posts that discusses everyday practical needs that almost no one ever talks about in providing care and making life easier for both us as caregivers and the loved ones with dementias and Alzheimer’s Disease that we care for.

In the first post in this series, we discussed how to make things easier day-to-day for our loved ones in the areas of eating and incontinence.

In the second post in this series, we discussed day-to-day helps in the areas of personal grooming and bathing in the journey through dementias and Alzheimer’s Disease with our loved ones

In this post, we’re going to discuss the other day-to-day areas where we can make care easier for ourselves and our loved ones in the journey through dementias and Alzheimer’s Disease.

The first area we’ll look it is how to effectively and safely address limited mobility and problematic mobility issues that arise both as a result of the progression of these degenerative neurological diseases and the aging process itself.

Because dementias and Alzheimer’s Disease affect the parts of the brain that control movement and balance, even our loved ones with no other health-related mobility limitations will eventually develop a shuffling gait and maintaining their balance when standing or walking will be difficult, increasing their risk of falls and injuries.

Our loved ones will also have a much harder time getting up and down from a seated position.

One of the most noticeable difficulties will be getting up from and sitting down on the toilet.

bedside commode going gentle into that good nightMany occupational therapists will recommend, as part of the home adaptive accessory purchases, buying a bedside commode for use when our loved ones are sick and unable to easily get to the bathroom or when – especially toward the end of life – if our loved ones aren’t completely immobile, walking any distance is too difficult.

A bedside commode will cost between $30-$40 out-of-pocket and can be purchased at a local medical supply store. However, with home health care or palliative health care, this will be covered by insurance (Medicare or other insurance) as part of the home health care or palliative health care services and equipment.

Occupational therapists will also recommend using the chair portion of the bedside commode over the bathroom toilet in the interim to facility easy standing and sitting.

This is not the best option.

The bedside commode chair is wide, and often won’t fit well, especially in smaller bathrooms, and securely enough over the toilet for this application.

Additionally, the distance between it and the toilet (even with the open guard that comes with most of them) makes keeping the toilet area clean and sanitary more difficult.

So I recommend, instead, a raised toilet seat with arms. 

raised toilet seat going gentle into that good nightA raised toilet seat will cost around $60 out-of-pocket and can be purchased at a local medical supply store. However, with home health care or palliative health care, this may also be covered by insurance (Medicare or other insurance) as part of the home health care or palliative health care services and equipment.

The advantage of a raised toilet seat with arms is that it attaches to the toilet, is more secure when standing and sitting, and is more comfortable than the bedside commode chair. It is also more sanitary and easier to keep clean.

Installation is quick and easy. With the toilet seat up, the raised toilet seat is placed directly on the bowl of the toilet where it attaches securely with a large plastic bolt to the inside of the bowl.

As our loved ones progress in their journeys through dementias and Alzheimer’s Disease, they will become more sedentary than active.

This will mean sitting for long periods of time. Motor skills become more muted with neurological degeneration and a lot of the automatic sensory information that the brain gets, processes, and responds to will disappear.

Therefore, it will become less automatic for our loved ones with dementias and Alzheimer’s Disease to feel the natural discomfort of sitting in one position or sitting still for a long period of time that, when we’re neurologically healthy, causes us to automatically move and shift weight frequently when we’re seated.

This results in the increased likelihood of pressure sores and pressure ulcers developing. Once the skin breaks down in this manner, treatment and healing are difficult at best. Because of this, infection and sepsis often follow leading to death.

The most effective way to prevent pressure sores and pressure ulcers from sitting for long periods of time is to buy padding for chair foam pad going gentle into that good nightthe chair that distributes weight more evenly and that does the work of ensuring that automatic shifting of weight occurs.

The least expensive way (about $20) to do this is to put a thick (at least 4″) egg-crate-type foam pad (most come with a plastic covering to help with incontinence issues) in the chair that our loved ones with dementias and Alzheimer’s Disease spend most of their seated time in. 

These can be purchased at most big-box retail stores.

Another physiological change that occurs for our loved ones as dementias and Alzheimer’s Disease progress is difficulty swallowing (known as dysphagia). This difficulty includes liquids and solid foods, as well as medication.

Dysphagia presents two real dangers to our loved ones. One is choking. The other is aspirating food into the lungs, which can lead to the development of pneumonia. In fact, it is more common than not that pneumonia is the cause of death for our loved ones with dementias and Alzheimer’s Disease.

That’s how serious swallowing issues are for our loved ones.

However, we can help mitigate this risk by some very simple techniques that will facilitate easier swallowing and reduce the risks of choking and aspirating food into the lungs.

Let’s start with taking medication since this is usually where swallowing issues appear first in the journey through these neurological diseases.

However, before I discuss the technique that usually is helpful for our loved ones to more easily swallow medications, it is important to discuss the medications themselves and the form they are administered in.

pill cutter splitter going gentle into that good nightFirst, as caregivers, we should all have a pill cutter (also known as a pill splitter) as part of pharmacy stash. These can be pick up at any pharmacy very inexpensively.

This will come in handy when managing medications with varying dosages (such as diuretics or glucocorticoids like prednisone, which might be increased temporarily or gradually and then decreased the same way). 

However, I strongly advise against a pill crusher and crushing any medications (although assisted living facilities and nursing homes routinely ignore this when administering medications to residents with dysphagia). The reason is because there are medications that when crushed can cause serious side effects and become completely non-therapeutic.

unsweetened applesauce medication swallowing going gentle into that good nightWhen our loved ones with dementias and Alzheimer’s Disease begin to have problems swallowing medications with water or juice, the easiest and usually-most-effective way to help them be able to swallow the medication is to use applesauce (I recommend unsweetened).

Put the pill on about 2/3 teaspoon of applesauce, which goes down the throat more easily, and swallowing should be much easier.

If our loved ones have medication that come in a large pill form (potassium supplements are a good example and because they tend to dissolve in the mouth and are very bitter are not a good candidate for cutting in half), we should have our loved ones’ primary care providers (PCPs) prescribe a different form of the medication.

Some medications are available in a liquid form (potassium, for example, comes in a liquid form and can be mixed with applesauce).

Other medications are available in a sprinkle form (for example, Depakote, which is often used for mood balance in Lewy Body dementia because of the high sensitivity to anti-psychotics like SeroquelXR, is available in sprinkle form and can be mixed with food).

If a liquid or sprinkle form of the medication is not available, then we should work with the PCP to change to a smaller-pill alternative that will produce equivalent results.

As swallowing becomes even more difficult for our loved ones, liquids and solid food may need to be altered as well.

Sometimes this can be as simple as cutting up food (meat, for example, can be very hard to chew thoroughly in large pieces) into very small pieces and modifying or eliminating foods.

Easy foods to modify are vegetables. Raw vegetables and salads become difficult to chew and swallow for our loved ones as they reach this stage of dementias and Alzheimer’s Disease. Easy alternatives to ensure good nutrition are cooked beans and finely chopped vegetables, including pureed vegetables and beans dysphagiasome of the lettuces we normally use for raw salads (avoid kale and mustard greens – I use these for raw salads – because even cooked, they can be difficult to swallow).

You can also use these cooked beans and vegetables to make a creamy pureed soup. The key is to make the soup so that it approximates the texture of applesauce (not too thick and not too thin).

And I will pass this modification on as a personal note – if you want my recipe, email me at goinggentleintothatgoodnight@gmail.com – for cornbread. Crumbly, grainy, and textured breads and crackers are eliminated from our loved ones’ diets when swallowing everything becomes problematic. The reason is that they can choke and aspirate the little grains and crumbs into their lungs.

But my mama loved cornbread and I wanted to see if I could find a way to keep it in her diet. I had been doing some reading on healthy substitutions in baking (for oil, for sugar) prior to this ever being an issue, so I decided to try one of the healthy substitutions for oil – yogurt – in a batch of cornbread to see if it would change the texture from grainy to smooth. It worked perfectly (beautiful texture) and we were able to keep that in Mama’s diet (and any time we can find a way to do this, please go for it and try it!). 

Swallowing issues may advance to the point where the dysphagia diet levels need to be implemented. There are three levels in this diet, depending on badly swallowing is compromised. I have not personally used these, although I’m familiar with them.

However, this is something that a speech therapist with home health care or palliative health care is qualified to and can help and guide us through at this juncture with our loved ones with dementias and Alzheimer’s Disease.

I can’t emphasize enough how important it is for us as caregivers to have one or other of home health care or palliative health care on board as we provide care for our loved ones since they have resources, like speech therapists, who are available to walk us step-by-step through each phase or issue that we may encountered.

This is the last post in this series. If there are other day-to-day “in-the-moment” things related to caregiving for our loved ones with dementias and Alzheimer’s Disease that would make your life – and, no doubt, many others’ – easier that you would like to see discussed, leave a comment here and I’ll work with you to get you the answers and the help you need.

And please don’t forget to share this on social media. Dementias are more prevalent than ever – and will only increase from this point on – and more and more people are in the role of caregiving for their loved ones.

I often have people ask me what they can do to help and support other caregivers. All you have to do is share. I’ll do the hard lifting of research and writing. 🙂

Even if you don’t know all the people in your online networks, by sharing this information with them, you may be giving a lifeline to someone who is struggling, feeling overwhelmed, and completely alone on their journey.

We never know whose lives are crossing the path with ours. And this may be a random act of kindness that you’ll never even know you did. All you have to do it hit the Share buttons (and there is an email button for those who may not be on social media) for the social media forums you’re on to pass this information along to whoever may need it and can use it.

Thanks!

Making Life a Little Easier in the Care of Our Loved Ones with Dementias and Alzheimer’s Disease – Part 2

mother daughter care love going gentle into that good nightThis is the second in a series of posts that discusses everyday practical needs that almost no one ever talks about in providing care and making life easier for both us as caregivers and the loved ones with dementias and Alzheimer’s Disease that we care for.

In the first post in this series, we looked at how to make things easier day-to-day for our loved ones in the areas of eating and incontinence.

In this post, we’ll look at the areas of personal grooming and bathing in the journey through dementias and Alzheimer’s Disease with our loved ones

The progressive neurological damage of these diseases can affect our loved ones in several ways in the areas of bathing and personal grooming, which may necessitate accommodations for them in these areas. 

Before we discuss those in detail, it is imperative that we always respect the dignity of our loved ones with dementias and Alzheimer’s Disease, and that we give them as much autonomy and independence in all areas of their lives, including these, as is safe.

Dignity is not negotiable. Our loved ones deserve that at all times and we owe them that at all times. Being more dependent and less able to take care of themselves is hard enough on our loved ones, but to not respect and maintain their dignity is humiliating and devastating.

Our loved ones with dementias and Alzheimer’s Disease have been and are being robbed of their quality of life by an unseen or several unseen thieves in their brains. We should not be adding insult to injury by robbing them of their dignity.

Independence is also critical to the well-being of our loved ones. Safety concerns will, at times, limit full independence. However, that should be the only reason we curtail independence in any way.

Being a lot slower at doing things, being less than perfect at doing things, or forgetting how to do something but trying anyway should never be reasons why we take independence away from our loved ones. If we do, shame on us. 

The requirements of making bathing – including washing hair -easier for our loved ones with dementias and Alzheimer’s Disease will change as these neurological diseases progress.

However, there are several things that we should be aware of throughout the course of these diseases:

  • Showering or a full bath every day is hard on and can damage the fragile skin of our elderly loved ones. A good rule of thumb is alternating showering or full bathing every other day with the equivalent of a sponge bath.

  • Harsh soaps and shampoos will also damage skin, including the scalp. Baby bath wash and baby shampoo is the gentlest option for bathing and shampooing hair.

  • Skin also dries out as our loved ones age – diuretics will make skin dryness even worse – so we should make sure our loved ones are lotioned up well each day with a good hydrating lotion.

  • Bathtubs for older folks are difficult to get in and out of and present a greater danger of falls.

    If you are reading this with younger loved ones you may be caring for in the future or even with yourself in mind, please make sure that a first-floor bathroom has a walk-in shower (ceramic or fiberglass frame – a metal frame can cut), which can be adapted for even greater safety using assistive devices.

    When staying in a hotel, be sure to request a handicapped room since these have walk-in showers (which are even wheelchair accessible, if needed).

  • Make sure the bathing area is the warmest room in the house. As our loved ones get older and as dementias and Alzheimer’s Disease progress, sensitivity to cold is even more pronounced.

    If there is no additional heater built into the bathroom, use a space heater. About 15 minutes before bathing time, turn the heater on and close the door. This will ensure that the bathroom is at a comfortable temperature by bath time.

  • Have everything you need for bathing, personal grooming, and dressing ready before starting the bathing process. 

    This makes the process go more smoothly and efficiently and it ensures that we don’t have to leave our loved ones unattended – with the possibility of falls and/or injury – during the process.

  • Water temperature is crucial and we must ensure that it’s not too hot or too cold. Run the shower (or sponge bath water) until it is on the warmer side of lukewarm as a general guideline. 

  • The sensation of water pouring down from a shower can sometimes be frightening for our loved ones with dementias and Alzheimer’s Disease as they approach the middle and late steps of these diseases.

    My personal theory is that it’s a combination of three things: a heightened sensitivity to change (resulting in confusion and anxiety), the suddenness of it, and the feeling of being wet.

    We will notice that some days showering is not an issue and other days it’s a huge issue.

    On the days that it’s a huge issue, it’s important that we don’t force our loved ones into a situation that is frightening for them, because this will increase fear, anxiety, confusion, and disruptive behavior.

    Instead, we should opt for a sponge bath or cleanup with adult washcloths and try again another day.

baby wash moisturizer going gentle into that good nightAs far as bathing and shampoo products go for shower days, I recommend Johnson’s Moisture Baby Wash and Johnson’s Baby Shampoo.

While there are generic brands of baby body washes and baby shampoos, I found the quality inferior (i.e., they were more watered down) to Johnson’s baby products. 

baby shampoo going gentle into that good nightSince these are designed for delicate skin, they meet the bathing and the shampooing needs of our older loved ones with dementias and Alzheimer’s Disease as well.

Additionally, the shampoo won’t irritate the eyes if it drips into them. Since following directions – such as keeping eyes closed – is harder for our loved ones to do or sustain if they are able to do it, this ensures that no harsh chemicals get into their eyes while washing their hair.

disposable premoistened adult washcloths going gentle into that good nightFor non-shower days, I recommend using disposable adult washcloths. Adult washcloths are large and premoistened, usually with aloe added, and can be used very effectively to clean up. They are not flushable.

Adult washcloths can be bought inexpensively in bulk at warehouse clubs like Sam’s Club, Costco, and BJ’s (online or in-store).

A product that many hospitals use for bathing that I do not recommend is no-rinse body wash/shampoo. One reason I don’t recommend no-rinse body wash/shampoo is that I don’t find that it does a good job of cleaning and it leaves a slight residue on skin and hair. The other reason I don’t recommend no-rinse body wash/shampoo is that it dries the skin and hair out, which makes the fragile skins of our elderly loved ones with dementias and Alzheimer’s Disease even more dry and fragile. 

There are several things that we’ll need to do to ensure the bathroom and shower is safe to prevent falls for our loved ones.

Most modern bathroom floors are either ceramic tile or linoleum. Both of these surfaces are very slippery when they’re wet, so we want to ensure that the floor has an adequate amount of non-skid covering to ensure the safety of our loved ones when they are wet.

Duck Brand Hold-It for Rugs non-skid tape going gentle into that good nightRugs and oversized bath mats are the easiest and least expensive way to cover the bathroom floor adequately. It’s also easy and inexpensive to ensure that they are non-skid by applying non-skid tape to the back of the rugs or bath mats. The best product I found for this is Duck® Brand Hold-It for Rugs™, which can be purchased through many venues online or at home supply stores.

Non-slip tub/shower mats with suction cups are the usual recommendation to keep our loved ones with dementias and Alzheimer’s Disease from slipping and falling in the shower. However, my personal experience with these is that with most shower floors, the suction cups don’t adhere well and the mat moves around easily.

non-skid safety tape shower tubSo I don’t recommend these for the shower floor. Instead, I recommend non-skid strips or tape designed specifically for the shower.

The entire floor of the shower does not need to be covered nor do the strips or pieces of tape have to be right up against each other (gaps between them are fine as long as they are not wide enough to cause a slip or fall) , but you do want the primary walking surface to have enough skid-resistant strips or tape in place to ensure safety.

Like the non-skid tape for the rugs, this is very inexpensive and provides the maximum safety for our loved ones and can be purchased online at Koffler Sales Company. There is no quality difference between the 3M™ and KSC brands, but because 3M™ is a more-recognizable brand, the price for their products is higher.

As far as the safety of our loved ones with dementias and Alzheimer’s Disease goes in the shower itself, there are two additions that I would highly recommend.

One addition is a safety grab bar. There are two kinds of grab bars for showers on the market. One kind requires no hardware to install it because it uses a suction-cup locking system. The other kind requires hardware to install it (and, if you’re not handy, may require a professional to install it).

safety grab bar shower hardware going gentle into that good nightAlthough the easy-to-install grab bar is less expensive overall, I don’t recommend it for our loved ones with dementias and Alzheimer’s Disease. Because it uses a suction cup to hold it to the shower wall, with enough weight or time, it could become detached and cause a fall.

Therefore, I recommend the grab bar that uses hardware to attach it to the shower wall.

Although this presents work and a possible upfront cost for installation, it gives our loved ones the extra measure of safety for fall prevention.

shower chair with back and no armsThe other addition that I recommend is a portable shower chair.

Built-in shower seats are often small and in one corner of the shower, which doesn’t facilitate easy showering.

However, the main concern with built-in shower seats for our loved ones is that they are slippery and the fall/injury potential is great.

Shower chairs allow our loved ones with dementias and Alzheimer’s Disease to sit either during the shower or when they get tired during the shower. 

For the most comfort, I recommend a shower chair with a back and without arms.

The shower chair should be placed in the shower near the grab bar.

We should be on hand while our loved ones are sitting in the chair and we should always assist them – directing them to use the grab bar to help – getting up and down out of the chair. While the shower chair’s feet have rubber grips, the chair will move when our loved ones are standing up or sitting down. 

In the next post in this series, we will look at how to make life easier in the areas of mobility and functionality/accessibility for our loved ones with dementias and Alzheimer’s.

Coping strategies with Alzheimer’s that invokes the feelings of guilt.

This is an excellent post…many of the things that I talk about in with regard to how we as caregivers respond to our loved ones in You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease are beautifully and eloquently stated here by someone who has Alzheimer’s Disease.

You know, for me, one of the greatest blessings in my life was the opportunity to be the caregiver for my mom. I got frustrated, at times, before I realized what was wrong, but the frustration was not with my mom, but with me because I didn’t know how to make things better for her.

But I didn’t take that frustration out on my mom. Instead, it provoked me to be even more protective, more gentle, more kind, more caring, and more loving toward her. Intuitively, I knew she was scared and because I knew how fear manifested itself with her, I did my best to make sure that she knew that she was safe and comfortable and that I would never leave her.

I also made sure that her dignity and independence (one of the chapters I cover in-depth in this book) were kept intact (independence was only modified when safety was an issue, but even then I was very careful to let Mom have as much as she could handle) to the end of her life.

The way I looked at caregiving was that I was fulfilling the circle of life for my mom. She did the same things for me when I could do nothing for myself, when I was helpless, completely dependent, kept her up all hours of the night, and was finicky and fussy. She didn’t leave me. She didn’t complain. She didn’t walk away. She did everything she could to show me love, care, and comfort.

And that she deserved from me when the time came that the roles were reversed.

Handbagwarrior: Dementia and me

There is this wonderful site by Ann Napoletan, who was a carer for her mother with Dementia. The site is packed full of information on the disease. Who can help, support for carers, support for those with the disease; what is Alzheimer’s with signposts to tests to check yourself.FUNNY-FUN-FUN.COM

One thing that struck me when I was browsing through it was that I need to address the fact that I have a reluctance to ‘acknowledge’ the trauma of caring for someone with dementia.

This is a tough thing for me to write about because I risk not meeting expectations, and of being too honest with my thoughts.

At first I thought it was a simple case of me feeling somehow angry that they spoke so loudly about the trauma of being a carer, (which I was told was my own coping mechanism), but then that made me feel really…

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