Alzheimers Difficulties

Caregivers Support for Alzheimer’s Disease Victims necessarily includes knowing the Alzheimer’s Difficulties faced daily by those stricken. The following is a list of many of the common Alzheimer’s Difficulties that Victims suffer through.

An Alzheimer's victim and a drooping flower_Both are beautiful

An Alzheimer’s victim and a drooping flower_Both are beautiful.

Common Difficulties

for

Alzheimer’s Patients

As Caregivers for Alzheimer’s Patients, it’s logical that in order to provide progressively better Alzheimer’s Support you’ll naturally wish to become aware of particularly common difficulties experienced by those stricken with Alzheimer’s Disease.

First though,
let’s get an idea of the typical
Progression of Alzheimer’s Disease…

Click:

Stages of Alzheimer’s Disease

From the Alzheimer’s Playbook…
(See Links)

Do not ask me to remember.
Don’t try to make me understand.
Let me rest and know you’re with me.
Kiss my cheek and hold my hand.

I’m confused beyond your concept.
I am sad and sick and lost.
All I know is that I need you
To be with me at all cost.

Do not lose your patience with me.
Do not scold or curse or cry.
I can’t help the way I’m acting,
Can’t be different ‘though I try.

Just remember that I need you,
That the best of me is gone.
Please don’t fail to stand beside me,
Love me ’till my life is done.

Unknown

Now then, the following is a list of many of the more common difficulties experienced during a Victim’s digression through the various stages. Along with the listed difficulties, you’ll also discover some support considerations to ponder.

Click and go right to the topic of your choice…

Memory Loss

Lessened Appetite

Bathroom Difficulties

Inability to Articulate

Loss of Independence (Loss of Mobility)

Hardened Heart (Personality Changes)

Loss of Freedom

Loss of Friendship

Sundowning

Shadowing

Wandering

Memory Loss… Alzheimer’s

It is vital to the Caregivers well being and surely as a result, the betterment of the person afflicted that you completely internalize the realization that by and large, the mind of the person afflicted with Alzheimer’s simply does not any longer work in the manner in which you are familiar. NOR does it work in any manner as does the average healthy person of your experience. And sadly, will likely never again return to that which you remember. If you fail to both fully comprehend as well as completely digest the realism that their mind is by and large no longer performing in the manner it always did, you will bring upon yourself perhaps immense emotional difficulties and also surely cause the afflicted person an ongoing, if not unending, degree of internal emotional stress.

Coupled with internalizing that reality, you absolutely must earnestly endeavor to always bear in mind the afflicted person’s words and actions reflect what they honestly believe has happened (or is happening) and/or what they’ve experienced. You are wise and nurturing if you take them at their word and for that particular moment or so affirm whatever it is they believe. You need not even stick with reality. If you say anything which is even remotely along the lines he or she is thinking… and you can even change the subject… rather than opening the proverbial argumentative can of worms, you will have in a very nurturing way probably solved the issue of the moment. (Because in all likelihood it’ll not be but another moment or two until their current reality of existence changes and you can with a then more willing participant better put forth that which you are trying to accomplish.) The very last thing they need is you to argue with their reality. After all, they absolutely know they are right in their analysis of things as well as their expectation of how things should be done.

Friend, doubtlessly from a purely technical standpoint you might have an argument by suggesting you are right when you persist in trying to bring them from ‘wrong thinking’ toward a higher degree of realism. But, from the standpoint of the reality of Alzheimer’s… that is, dealing with a person whose mental capacity is far less than whatever ‘normal’ might be, you are most wise to cooperate with them and by so doing work through the difficulty at hand and at the same time produce an elevated spirit within both of you. It is almost always far better to avoid confrontation. They simply will not believe that their reality is wrong.

Think about it like this: Even though you are right, if you impose your will upon them in a manner which devalues their heart and mind, all you’ll do is bring yourself to a point of existence where you’ll be able to look yourself in the mirror and be proud of yourself for winning an argument with a person who is for all practical purposes is completely void of the proper use of their mind. Congratulations! Friend, if you can take pride in such a thing… you should not be caring for a person afflicted with Alzheimer’s!

Now, do not misunderstand: You’ve got to ensure that you bring the afflicted person along the course… you’ve …set. In a very real way you are the adult and he or she who might even be your parent is in fact the young child. Period. End of Story. You must use your intellect and your wit in order to positively advance the best care you are able to provide. You best do that by not getting hung up on the immediate intellectual right or wrong of any issue. If necessary, use your wit to momentarily agree with a ‘wrong’. Then you’ll far more easily be better able to proceed through that momentary stumbling block toward where you know you need to go. After all… before too many moments have passed they absolutely will forget about the whole thing, anyway.

Lessened Appetite… Alzheimer’s

As the disease progresses you’ll find the afflicted person has an increasingly less desire to eat. Even life sustainable portions. Friend, it’s just part of the cycle of Alzheimer’s. Another reason is their needs are less because they very often don’t get the day to day exercise they need. Also, many times they believe they have already eaten enough and/or they don’t really comprehend they must eat in order to live. It’s strange, but the correlation between eating and living doesn’t seem to compute. Compounding the difficulties, an older person’s taste buds aren’t what they used to be so from their perspective, ‘that stuff you want me to put in my mouth doesn’t taste good’.

Certainly you should approach your Doctor in order to learn how to enhance the vitamin and mineral considerations you give them. Also, you might feed he or she smaller portions, but more often throughout the day. Another consideration given me was to serve smaller portions… and put them on a smaller plate. From their visual perspective, you’ll have less a hassle trying to get them to eat. Sometimes it also helps to ask them which of the plates of food they’d like… the large one or the small.

Except during the final stages of the development of Alzheimer’s, don’t be surprised when your loved one absolutely refuses to eat. On other occasions, you might just hear them ‘honestly’ proclaim that they haven’t eaten for three days. (Believe me, such a proclamation is fun to hear when you are among strangers in a cashier’s line somewhere! Don’t worry about the dirty looks you get!) Regardless of where they at the time mentally reside when they refuse, just wait awhile, warm up their food and then pretend, ‘it is now dinner time’. Because they’ve likely already forgotten the past, they will often believe it now is time to eat.

Alzheimer's - There is beauty in the fog of night

Alzheimer’s – There is beauty in the fog of night.

Bathroom Difficulties… Alzheimer’s

To say the least, things of this nature can become an ongoing nightmare. As often as not he or she with Alzheimer’s will not realize until the final moment they have to use the toilet, if then. By then, it’s often too late to avoid their relieving themselves before making it to the toilet. Another factor to remember is that depending upon their individual progression through the stages of Alzheimer’s, they often won’t even realize they’ve gone to the toilet in their pants. And yet another factor to remember is that some or all of the time he or she will not entirely understand the concept of thoroughly cleaning themselves after they’ve visited the toilet. Thus, as the disease progresses it is up to the caregiver to ensure they often and regularly visit the toilet. While there, it is important that you check their pants for cleanliness as well as expect to clean them afterward. Often, a quick sit down shower in an appropriate hospital chair can lessen what otherwise might well be a continuous ordeal.

Emphasis: Whether he or she is willing or not, you’d be wise to develop a habit of ensuring they visit the toilet on a regular basis. While the progression of the disease is the best guide, every two hours might be a good example to begin with. Perhaps also within half an hour both before and after eating every meal. And certainly before you leave the house for any reason… no matter how short a period you expect to be gone. Surely, also pay attention to what they eat and reduce the portions of food which might negatively affect their sometimes already pronounced difficulties. Adult briefs (diapers) are also a wise and welcome consideration.

Strive to maintain the right attitude during toilet trials. For a period of time now Mom hasn’t been able to walk, even stand by herself. Thus, I’ve been lifting her up out of bed, out of a chair, etc. I had placed her on the toilet, had to leave the room for a moment and upon return, for a period of time sought to discover whether or not she had yet urinated. It was turning into an ‘ordeal’. I could only receive a very confused response. I was nearing the point wherein I could begin forecast a bit of momentary instability relative to my mental and emotional ability to remain calm. After all, she simply needed to say, ‘yes’, or ‘no’. After repeating my question once again, I firmly asked, ‘Mom, do you need to pee or, should I lift you back into the chair’? Through tear filled eyes she responded, ‘What’s the difference’? She desperately wanted to do the right thing, but for those few minutes her mind had been entirely unable to grasp why she was on the toilet, what I was saying, what I needed to know… and she couldn’t even decipher what the difference between urinating and sitting in a chair meant. Sadly, all I could do throughout that adventure was to become increasingly unsettled – even approaching anger. What a fool I had been.

On a much, much lighter note, yet basically dealing with the same subject… I trust you won’t think ill thoughts too awful ill of me at my offering what I hope you’ll accept as a ‘Lighter Side‘ moment when facing the trials of Alzheimer’s. Friend, if I could relate this to a mortician seeking his or her own ‘Lighter Side’ moments in order to remain well adjusted, Caregivers understand that in many arenas of care, while no offense is ever given the Alzheimer’s victim, we also must seek that ‘Lighter Side’ in ways others might think inappropriate. (Or, perhaps it’s just me with my ‘left field’, poorly adjusted sense of humor. Only God knows.)

Mom is now quite near death. I say that, not as a professional, but with a reasonable understanding of the realities of her current existence. Fortunately for us, it was only a relatively short time ago it became necessary to clean up after her infrequent bowel movements. That, because at that time she simply could not even begin to comprehend not only the idea of toilet paper and cleaning up, but of even what going to the toilet meant. I write the following few sentences for the purpose of perhaps lessening your discomfort as you anticipate your responses when it comes your time to do the cleanup chores. Especially when you have an extreme involuntary gag reflex like I’ve always had… (those similar to those you saw on the above video.) Friend, it has been astonishing to me since taking over that aspect of Caregiver responsibilities that my gag reflex simply and unequivocally disappeared. Presently, I don’t think I could gag if I had wanted to. Perhaps God stepped in and at least for this period of time in my life removed that horrendous, automated response I’ve life-long had. Whatever the case, take heart. Even if your reflex is as extreme as mine was, perhaps you too will then discover you are able to have peace and even almost a bit of serenity if or when such responsibilities come your way. I hope so.

Inability to Articulate… Alzheimer’s

During the course of our lives, most of us have at times groped for a word or two. Particularly as we’ve grown older. You must expect such a thing from a person with Alzheimer’s and not give it anything except perhaps a passing, wistful thought. Stress within the afflicted person though, might be quite pronounced when he or she realizes they should know that word. Such a remembrance might somehow bring to the cognitive level of his or her mind the self wonder at an illness they likely don’t even know afflicts them. Coming to such an even momentary quasi understanding can be a horrifying experience for them. Thankfully, by using your intellect and wit that too, shortly falls into non remembrance.

Typically, I will usually quickly anticipate what it is they are searching for and interject those words to help them carry on with their thoughts. Sometimes I’ll simply go ahead and provide an answer to that which they seek. Or, knowing they’ll quickly forget what it is they were thinking about anyway, I’ll provide an answer to something entirely off the subject knowing that by that very prompt their mind will become fixed for at least a moment on a different subject which just might be less internally stressful than that which a moment ago they were struggling with. Regardless of which direction I’ve chosen to take, the end result is that I’ve taken the edge from their developing anguish. All the while explaining, ‘not to worry because sometimes we all forget’.

Admittedly, there is some controversy to commonly using this approach. Good controversy. So, sometimes I will employ the focus of that opposing view. I will allow the afflicted person to ponder their quest for a word. Believers in that approach are correctly certain you are helping them work the muscle of their brain. That’s a good thing!

When you take that approach though, you have to be extremely careful to stay immediately on top of things because in a moments time the ‘good research’ opportunity you’ve given them can change to ‘nightmarish anguish’. That, being the self recognition that something is mentally wrong with them. They’ve at least momentarily realized they should be able to remember. At that point who knows what other ‘something is wrong with me’ self revelations might begin to spring forth from deep within his or her mind.

A beautiful park walk with an Alzheimer's Victim

A beautiful park walk with an Alzheimer’s Victim.

Loss of Independence… (Loss of Mobility)

This is typically of greater concern during the early stage of Alzheimer’s. Usually during the latter part of the First Stage or early into the Second, there comes a point in the digression we come upon what might be thought of as a ‘good thing’. It takes place over a period of time when they are transitioning from being completely independent to the point they are dependent. That ‘good thing’ is… your …recognition they are no longer aware they should be independent. Your understanding of the finality of that brings forth a certain degree of ease… because … you know the stress level of your loved one has gone down considerably.

Much of the transition though, can be a horrifying experience for the Alzheimer’s patient. And for the caregiver. Friend, can you imagine the scope of mental and emotional gyrations which are wholly and completely experienced when a person catches ever more powerful glimpses of the reality they are not only losing virtually every aspect of their mind, but have absolutely no way to recover any portion of it?

The ‘key’ which cannot be over emphasized is that throughout this ordeal the Alzheimer’s patient must acutely sense from you a very real – to the core – awareness that you deeply love them. Friend, without the slightest question, your being rock solid in your devotion toward them is the only thing your loved one can hold onto which has even the smallest chance of helping them through this life ending ordeal. Period. End of Story! NOTE: It’s important to stress this loving attitude must prevail throughout your loved one’s entire ordeal.

Hardened Heart… (Personality Changes)

It is said that as we grow older we become even more ‘rooted’ in what has been our dominant, life long nature. In addition, because our inhibitions tend to become less pronounced as we get older expressions of those ‘roots’ don’t mind springing forth with abandon. Often. In other words, if you have primarily been a less than nice person, there is no reason to suspect such a nature will have any difficulty in becoming more pronounced as you age. On the other hand, if as an example, you have had the nature of a caregiver, i.e. generally seeking to better another person’s life, that too is likely to become more pronounced.

Surprisingly, both just might bring about more difficulties for you, providing the responsibilities of a caregiver! CASE IN POINT: For much of her life my Mom could be identified as having the nature of a caregiver. Today, that compounds the normal Alzheimer’s prompted difficulties I have when feeding her. That, because she is by nature forever trying to give her food away. She wants to be certain everyone else is well taken care of and cannot readily understand that she must also care for herself.

The idea I am presenting in this section is that you should at all times attempt to identify the best available within the person and heartily strive to commonly bring to the fore that at least somewhat identifiable nature. The patient as well as your ability to better cope will be the better for it.

Loss of Freedom… Alzheimer’s

This also is a more serious consideration during the early stages of Alzheimer’s. However, as the level of their awareness diminishes, the remembrance that they ‘have a right’ to stand up and go here or there at will somewhat diminishes, as well.

Early Stages: During the early stages of the disease, he or she afflicted by Alzheimer’s doesn’t yet have a completely incapacitating degree of short term memory loss. Because they are more aware of that which is going on around them… and their independence remains a principle participant in their decision making process, they might become more argumentative at your attempts to limit their freedom.

Later Stages: Now, on the other hand, the motive behind an Alzheimer’s patient’s course of thought and action is quite different. While you previously dealt with an Alzheimer’s patient who was at least somewhat aware they should be able to command a certain amount of direction in their life, now you are dealing with someone who rather than cognitive intellect giving them that right, their prompt to command the direction of their life arises from a quite limited degree of… early memories. And you, politely exerting yourself as the ‘adult’ have a better chance at guarding their entire access to freedom.

Depending upon the stage they are traveling through, there is quite a difference in the manner of care you, the caregiver, must provide. While the former offers you a much higher level of cognitive interaction relative to their freedom, which can bring forth many mutual blessings, the latter requires you to become increasingly proactive and take a progressively more pronounced degree of control over any situation which might arise. You must more readily direct an afflicted person’s ambitions toward something that makes more sense for the overall betterment of their care.

CASE IN POINT: My Uncle, during what could be considered the latter, early stage of the progression of Alzheimer’s: While living at a nursing home he believed that whenever he wanted he should be able to walk outside and go wherever he wished. After all, he’d always been in control of his life. So, much to the chagrin of the staff he continued to leave at will. As time passed however, he found out something was wrong. The staff began to more profoundly emphasize the fact that he could no longer remain as free as he’d always been! Not to be stopped, somewhere within his brain came forth the understanding that he had to time his escape to miss the watchful eyes of the nursing staff. He ended up leaving several more times which, of course, caused an increasing level of concern among the staff. Finally, one nurse became dramatically more proactive. She came up with a great idea. She hid his shoes in the staff locker room. As sad as it might sound, unless supervised, my uncle never left the home again. You see, he knew from his youth he should be able to go, but he also remembered that he couldn’t go outside without his shoes! Thankfully, that one caregiver got down to the business of using both intellect and wit. Considering the his transitioning toward the next Stage of Alzheimer’s my uncle was rapidly progressing toward, she came up with what proved to be a practical solution. She solved the problem and in so doing provided better ongoing care for my uncle. And believe it or not… he remained relatively happy because he knew he was doing right by not going outside without his shoes!

An Alzheimer's Victim Enjoying Peace

An Alzheimer’s Victim Enjoying Peace

Loss of Friendships… Alzheimer’s

By and large, people just don’t know how to cope with someone with Alzheimer’s. Also, dependent upon their age, family, friends and neighbors are fearful of the entire circumstance because in many ways they recognize they could well be looking at whom they’ll in time, perhaps shortly, become. Obviously, that surely can be frightening! So, for the sake of their own continued considerations of well being, that fear prompts one to keep distant. As time goes along, the participatory time that both friends and family once enjoyed with the afflicted person almost always diminishes. Both friends and family will often limit or entirely stop visits, vacations and even telephone calls. Surely not all, but most. That’s just the way it is. (At least they don’t attack and eat the afflicted one. Sharks will… but then again, its not quite time for the reading of the Will. The feeding might yet begin!)

From the perspective of he or she who has Alzheimer’s, as the progression is made out of the early stage into the more debilitating stages, any consideration about the loss of friendships becomes increasingly negligible because of the progressive death of their memory.

Except for one absolutely primary factor that you can never, ever forget: As is covered elsewhere on this Site, though the mind may well become almost entirely void of any consideration usually subscribed to man, the afflicted person’s emotions remain. Perhaps even rising to a more pronounced degree!!! The person afflicted with Alzheimer’s must… ALWAYS …recognize and wholly… FEEL …that almost mystical, all encompassing presence your love bestows. Never forget, because friends and family will often elect to remain distant… YOU …perhaps become their only thread to feeling any degree of what is normally credited as humanity. Please don’t let them down.

As the caregiver, the circle of family, friends and acquaintances… you …once had will also most likely diminish over time. Perhaps even members of your immediate family will more and more leave you to tend to the care of your (???_their_???) loved one by yourself. Moreover, your own time constraints brought about by the necessity that you provide proper care will likely further inhibit the continuance of any friendships or relationship to the degree you once enjoyed.

And unfortunately, it doesn’t stop there. In all likelihood, you’ll also discover your ability to develop new friendships, even new acquaintances will to a rather large degree fairly quickly go down the tubes. And to make matters worse, yet another factor comes into play: You already know the 24/7 demands upon you. Well friend, that can’t help but factor in to your decision whether or not to even attempt to develop new friends and relationships. It’s one thing if you are fortunate enough to have the time to try, but even that presents a problem. You see, the question is whether or not you will encourage another to embrace the huge limitations on life you now experience. For ‘their’ sake, are you wise, kind, et al to even attempt to develop new relationships? Who knows? I don’t! Moreover, I really don’t make any judgment one way or the other… it is simply a point worthy to consider. Only you and they, of course, are able to decide. Friend, know well that the act of providing ongoing support for a person afflicted with Alzheimer’s necessitates the possibility/probability of a high degree of personal isolation. Count on it. Do your best to mentally and emotionally prepare for it.

Yet, you must by yourself actively seek some avenues through which you might become better able to maintain your own ‘sanity’ as you progress through this adventure of life. On your quest, don’t forget to look at the simply things. Humor, as an example. Learn to smile or laugh at even the most minute things. Look for any and everything that might make even a momentary difference in the ongoing ‘sameness’ of your responsibilities to care for an afflicted person. Fit planned diversions in throughout the day and especially into the sometimes few free minutes you have available. And quickly grasp at unplanned diversions whenever they present themselves. Both will immensely help!

One avenue that’s so obvious you might not think about it is to actively pursue enhancing your relationship with the very person you are caring for. Such a pursuit mandates an increasingly favorable degree of peace, joy, love and happiness between the two of you… which surely helps you ‘cope’. More than that, though, toward what is literally a HUGE degree… you will have enhanced the peace, joy, love and happiness of the afflicted person, as well. Remember… YOU are their primary, and perhaps ONLY friend in life.

NOTE: From time to time Alzheimer’s victims sometimes do for usually only a short period of time mentally arise out of the depths of the tragic disease. The electrical impulses seem to momentarily become sequentially relevant to one another again thereby allowing for a certain degree of reasoning power to take place. Even then, though, due to the shortness of the event it’s difficult to determine how high they’ve risen because the depths soon claim them again. But during that time, to what degree do they take note of the fact they are so alone? Can you imagine the horror they even momentarily experience? Caregiver: You truly are perhaps their only personal angel… and you truly have been sent by God! Never take lightly your responsibility to draw near and to the degree you are able to psychologically prepare yourself for their eventual death, become a patient’s dear, dear friend.

Sundowning… Alzheimer’s

Sundowning means that even though their mind isn’t working properly, the person afflicted with Alzheimer’s Disease often still maintains some semblance of order with respect to a quasi timetable. If they are aware of the fact they are to be picked up from someplace at a certain time they will often become anxious as the time draws near for their loved one to pick them up. EXAMPLE: I take Mom to an Alzheimer’s Care Center three afternoons a week. (Wonderfully, she knows it only as her, ‘Woman’s Club’.) She very often is pacing the floor looking out the window for the car as the pick-up time approaches. For whatever reason, she becomes anxious thinking I might forget or entirely abandon her. Thus, when I am going to be late I almost always telephone and advise the caregivers. Remember… though an afflicted person doesn’t think like you or I, their emotions often go haywire. For little or no reason, their fears may well become pronounced.

By the Way: I went for a couple of years believing I was properly caring for my Mom. We went on daily rides in the car and walked throughout a variety of stores each week just getting out and enjoying. Nearly everything in me was devoted toward her well being. I didn’t realize, though, how much of a disservice I was saddling her with. Only after taking her twice to the Care Center did I finally discover my inability to more completely care for her needs. I’m principally speaking about the inter action with other people her own age she experienced at the Care Center. It did wonders for her. She once again had friends, a sense of community, and could visit with everyone as well as play a variety of games. (Due to her care giving nature, she also grew to believe she worked there as a staff member. That belief, encouraged by the staff, gave her a greater sense of personal worth.)

Shadowing… Alzheimer’s

Shadowing means the person afflicted with Alzheimer’s draws close to someone they trust. They feel safe with that person. Ideally, they also sense from that person a degree of respect, value as well as a variety of other aspects of love. As a caregiver, doesn’t it seem that a worthy goal is to become… ‘Shadowed’? Isn’t that an identification which teaches us we are doing all right by our loved ones? It sure does!

Wandering… Alzheimer’s

Throughout our lives we routinely tend to go here or there, or return from here or there. We are always on the move. Until the latter stage of Alzheimer’s, it is reasonable then, to recognize a person afflicted with the disease will tend to also be on the move. It’s not only who we as a people are, but it’s what a lifetime of moving about to get things accomplished has taught us to do. Even though it is quite likely a person with Alzheimer’s has no idea where they are going or why, they still ‘go’.

In a way, we might think of an Alzheimer’s victim’s tendency similarly as we do a child just learning to walk. Children constantly go to and fro all the while exploring their new world. A victim goes to and fro simply because the training of their lifetime has taught them that’s what they do.

Therefore, not only are we wise to keep an eye on how our human nature of wandering fits with your loved one during whatever stage of Alzheimer’s they are proceeding through, but to anticipate progression. For fire safety, should you have an electrician wire your stove, coffee maker, et al to a hidden principle switch that only you can control? How about your heating units? Is it drawing near the time to put ‘child safe’ latches on doors? Perhaps even on cupboard doors? How about locking doors leading to the outside? Friend, please know it is not at all uncommon to have an Alzheimer’s victim simply walk away from the home; from the neighborhood. Have you furnished the local police with a photo, etc.? Does your loved one wear an information bracelet? Have you ever thought about employing the use of leg irons on a fifty pound ball and chain? (With my sense of humor, I should be shot.)

Along with wandering, please note that an Alzheimer’s victim doesn’t necessarily recognize they are walking around with no clothes on. Or, with four pair of underwear and two bras on… half of which are on top and the other half underneath her outer clothes. Or, comprehend that it is not the best idea to go outside in two feet of snow with only their nightgown and slippers on. Or for that matter, understand that whether they are fully clothed or naked they can’t go out and work in the garden when the outside temperature is twenty degrees. Yes, sensible to you and I at this stage of our lives, but obviously not to someone whose mind isn’t working like it used to.