Three years ago today at 5:50 pm, my mama’s journey through dementias, Alzheimer’s Disease, and congestive heart failure ended.
With Mama’s death, like my daddy’s death almost 17 years ago, each anniversary seems like yesterday and forever at the same time.
But I’m thankful for the memories to help me try to cope with the permanent voids of their losses in my heart and in my life and I’m thankful for the hope that I’ll see them again whole and healed.
I promised you and Daddy both that I’d be there. God’s willing and so am I. So even on the days when it feels like life is just unbearable torment I continue to put one foot in front of the other with God’s help, enduring, persevering, and continuing to grow in that faith and walking toward fulfilling that promise, even if it doesn’t look like it and nobody else can tell.
But you, Mama, and Daddy would know if you were here and you’ll know when I’m there. That’s often the only comfort I have these days. And maybe that’s all I need when I can see that comfort through the pain. I know it’s worth it because I watched you and Daddy and I learned from both of you.
So I’m remembering you publicly today, Mama, just like I do privately every day of my life. I love you. I’ll see you soon.
When 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.
From 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.
The 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.
I’ve always tracked time through music. I can hear a song and go back with photographic accuracy and precision to the exact time, the exact place, the exact month, and the exact year that I either first heard it or when it made such an impact on me that I’ll never forget it.
Usually these jaunts will prompt me to walk back through other times and places in my life – perhaps to test my own cognition – to see if I still remember them with the same level of accuracy with regard to details and precision (even down to wallpaper and house layouts in each of the many houses we lived in growing up). So far, so good.
But yesterday afternoon I heard a song that took me back to almost five years ago – July 12, 2010, to be exact – and hit me with the same effect it did when I heard it that morning.
Unexpected tears began to fall as I relived that memory and the memory I relived that day that took me even further back in time, way before dementias and Alzheimer’s Disease came to take my mom and me through its journey together.
On Sunday, July 11, 2010, in the very wee hours of the morning, my mom had the psychotic meltdown that would land her in a geriatric psychiatric hospital for almost two weeks and that would give me the grim diagnosis that she was in the mid-to-late stages of vascular dementia and Alzheimer’s Disease.
When my phone rang at 7:15 a.m. that Sunday morning, I already knew it was about Mama. The week before had been insane – with wild and dramatic mood swings, mostly negative, with each one getting more dire, and out-of-the-ballpark suspicion and paranoia – so I knew we were coming to a point where something was going to break.
Quite frankly, I wasn’t sure it wasn’t going to be me first. I was restless, anxious, unable to sleep that Saturday night, and as I paced and prayed, I kept telling God He needed to do something because there was nothing left that I could do to help Mama.
And He answered those prayers. I wasn’t at all surprised when the voice on the other end of that early morning call identified herself as someone from one of the psychiatric hospitals in the area. She said that Mama had been brought into the emergency room around 3:30 that morning (Mama had called 911) and they had determined that she needed to go to the only geriatric psychiatric hospital in the area.
The lady on the phone ask me if it was okay to involuntarily commit Mama. I said the only thing I knew to say at that point: “Absolutely.”
She then told me the procedure for going over and changing it to a voluntary commitment by me, told me what to pack for her, and told me that Mama would be there by early afternoon.
I hung up, surprised, but not surprised, my mind racing about what I needed to do that day and what I was looking at needing to do within the next couple of weeks. It was all a little overwhelming, but I tackled the tangible stuff first that I didn’t have to think about.
I went over to Mama’s apartment in the independent retirement community she had decided to move to, without ever discussing it with me, five years earlier. I opened the door and decided to pack the bag I needed for her, clean up, and make sure there was nothing pressing I needed to take care of.
I packed Mama’s bag, labeling all her clothes so that they wouldn’t disappear. Then I decided to clean the apartment, make her bed, and do a thorough inspection of everything.
In the midst of cleaning (the refrigerator, which I tried to keep an eye on, but which I’d not been able to since she had pretty much banned me from her apartment the last couple of weeks before that, made me wonder how she had not killed herself with some of the science experiments that were in there), I found a notebook that she’d accused me of stealing two days before, hidden behind the only place I did not look when searching for it the day she told me that I’d better leave because she’d called the police to come and arrest me.
I shook my head as tears rolled down my cheek for my mom. I found a couple of bills that needed to be paid, so I took them home to pay. I knew even then that she would not be able to come back to that apartment to live, so I got on her computer and sent emails to her friends and let them know she wouldn’t be back on (no details), then unplugged the cable modem (I had been paying for her internet service) to take back to the cable company the next day.
Once everything was clean, I got Mama’s bag and her purse and the important papers I needed, and anything else valuable to take with me, and left to do the rest of what needed to be done that day.
The next morning, Monday, April 12, 2010, I began the day’s to-do list with returning the cable modem and stopping the service for Mama and having that taken off my bill. Everything was still surreal, although I was going through the motions, taking care of the things I could before the first visit I could have with Mama at noon.
On the way back from the cable company, I turned on the radio and this song came on:
Immediately, my mind went back to when I was little and Mama had the radio on all the time and we heard this song in the mix of the music that was played. I thought of those carefree days and when Mama was healthy and then all the music and summer days we’d had since then played like a movie through my memory.
Then I got to the present and I was sobbing. Not only for the past, but for the reality of the knowledge that we’d never be able to go back there again. I was crying for what we’d lost for good.
That was the song I heard yesterday. It took me right back to being in that car face-to-face with a new reality for Mama and me, reminding me again of that trip down memory lane that I had taken (and which I took again yesterday). And unexpected tears streamed down my face again.
I’ve had a hard time listening to “Mama” songs since her death. For the most part, I’ve avoided them like the plague because they evoke such a strong emotional/memory response in me and my mind and my heart get consumed with a grief I can’t stop and I can’t contain.
I don’t know exactly why this song prompted and prompts such a strong emotional reaction in me. There are no concrete, specific memories, other than the one five years ago, attached to it.
There are many other songs that I do have concrete and specific memories of Mama and me attached to: U2’s “In God’s Country,” The Commodores’ “Easy,” and Kenny Rogers’ “Lucille” are among them.
Maybe “Chrystal Blue Persuasion” is just a demarcation song for me and that is why it is so powerful. It encapsulates a childhood I miss, a mom who was at the top of her game, and a world and a time I’ll never have in again in this life. Maybe that’s all it is. And maybe that’s enough.
My advice? Embrace the music. Embrace the memories. And embrace the tears.
Because that means you had – and have – love.
And that is most precious thing we take, not just through, but beyond, this journey we walk through with our loved ones.
This 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 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.
Many 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.
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.
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 the 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.
First, 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.
When 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 some 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 email@example.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.
This 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.
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.
As 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.
Since 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.
For 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.
Rugs 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.
So 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).
Although 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.
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.
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.
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.”