An Alzheimers Victims Unending Horror Story Pt 2
In The Process of Revision
An Alzheimer’s Victim’s Horror Story
A true Unending Horror Story about how destructive people can become toward an Alzheimer’s Victim because they refuse to educate themselves even on the most basic difficulties of Alzheimer’s Disease.
Brainless Intrusions Hurt The Alzheimer’s Victim
The Real Life Story
For the sakes of both the Alzheimer’s victim as well as you, the Caregiver, you must be very, very decisive in what you allow your Alzheimer’s afflicted loved one to encounter.
In order to help you understand why the ‘Buck’… MUST STOP …at the primary caregivers door, let me give you an example of what a friend went through fairly recently. Believing most families work more closely together for the ultimate benefit of their Alzheimer’s afflicted loved one, hopefully the following is an extreme, uncommon example.
Yes, I know the people involved. And yes, there has been some trepidation in that. Yet, I believe there is a good degree of overall educational value in this exposure. That, coupled with the realization that for over three years now not one person has since approached my friend, James, to apologize or even to in any way strive to make amends brings forth an understanding that no one cares, anyway. By the way, since the below noted series of incidents only two of James’ extended family members have in even a limited manner made regular to somewhat regular communication with the Alzheimer’s victim. Principally through phone calls.
The names are fictitious:
James – My friend whose father has Alzheimer’s disease. John – My friend’s father who is the Alzheimer’s victim. Art – John’s closest friend and long time supporter. He has always been a friend to the extent he understands friendship. But the onset of John’s Alzheimer’s, coupled with Art not being the smartest guy in the world – the ongoing example of both the mental and emotional friendship he has since offered has been quite limited… and abrupt.
John is in his eighties. Except for his favorite brother Mack, not one of his other siblings had spoken with him for over two years. Unfortunately, Mack died. Naturally, Mack’s family wished to ensure his favorite brother was aware of his death. Therefore, they telephoned James wishing to pass the news to John. James politely told them he would advise his Dad, John, at the appropriate time and under the appropriate conditions.
Unfortunately, that wasn’t good enough for the extended family members. They continued to call until they found James had gone to the grocery store, leaving John for a short while in the care of Art. Knowing they hadn’t spoken for some time, Art understandably put John on the phone with them.
James soon returned home and found his Dad… ‘crying worse than I’ve ever known’. Upon discovering that regardless of his expressed wishes, the extended family members had gone behind his back and told his Dad of Mack’s death anyway, James wrote an extremely firm, even intense letter scolding them. (Reasoning with them over the telephone obviously hadn’t worked.) Within his letter he explained that because they lived only 300 miles away, when they learned of Mack’s death they should have immediately sent at least one family member in order to best ascertain the condition of John before blasting him with such news. Also, reasoning that other family members could likely die before his Dad, in the letter, James further advised them that in order to avoid compounding the problem, they should certainly entertain a trip to visit John before the next family member’s passing.
Come to find out, James’ immediate siblings even jumped on the bandwagon the extended family had constructed. They, behind James’ back, also began deriding him both for his position of withholding information from their Dad as well as his having sent the scolding letter.
The hugely unfortunate observation of character that James witnessed throughout this ordeal was that one single timedid an aunt, uncle, extended or even close family member including siblings went to James, wrote him a letter or even telephoned him in order to ascertain what could possibly cause James to… ‘act so horribly‘. …But at the same time they didn’t hesitate to communally enjoin in the antics you’d expect from a 13 year old girl. That is, gossiping and backbiting. Because none contacted James, each and every one of them obviously felt the proper course of action, i.e. the… ??? honorable ??? …way to continue life was to continue to repeatedly demean and degrade James behind his back. Apparently all the while feeling good about themselves because they were ‘just’ in their manner of life. Well, as you might guess, James became the despised black sheep of the extended family and his own siblings. See… Gossip
The problem, you see, wasn’t any degree of callousness on the part of my friend, James… his only desire was to protect his Dad from ongoing anguish by necessarily providing the information to his Dad only at the appropriate time and only under the appropriate circumstances. In so doing, James could have accomplished the wishes of the relatives and at the same time not causing the already suffering Alzheimer’s victim further anguish.
The die had been set… and James’ Dad began his uncalled for and quite extended period of suffering.
James and I have similar outlooks on how to best provide care. Among our ‘rules for care’ is the recognition there is a better way to tell our parents of family deaths than the manner in which his Dad was so abruptly and quite heartlessly told. Heartlessly, due to the impact the news had on John… and then the ‘teller’ simply hanging up the phone. Alzheimer’s Disease, friend, ensures one’s mind and emotional state aren’t able to accept and process things the way he could before becoming a disease victim.
The manner James and I have prescribed is that we will interject the bad news only as his Dad or my Mom brings the deceased person’s name up. During those short lived periods when so and so is on their mind, James and I tell his Dad and my Mom, respectively, something along the lines that the person in question is now living in Heaven. We do this even the very first time the question/bestowing of information comes up! Fairly often, each of us will at that same moment spin a smiling, uplifting yarn declaring that the person in question is now looking down at them from a cloud in Heaven with a smile saying, ‘Oh, my brother is so funny… he forgot again that I’m in Heaven’.
You see, friend, depending upon the mental digression of the Alzheimer’s victim, he or she doesn’t usually remember the subject ever having previously come up. And if they do, rather than once again facing the issue of… death … they are reminded of the peace of Heaven. More importantly, most of the time a person with Alzheimer’s doesn’t necessarily even acquaint Heaven with Death. Again… when we say, ‘Heaven’, the comfort is given without the pain of death being introduced… or constantly re-introduced… again and again and again.
Pay attention now: Neither his Dad, my Mom nor countless numbers of people afflicted with Alzheimer’s are retarded in the sense of always being completely unaware of all things going on around them. Though they come and go at will, victims do retain some sort of remembrances, vague as they might be. More importantly, they very often to one degree or other understand they are apt to forget things. Thus, because they often don’t equate Heaven with Death and usually can’t even comprehend the finality of death, anyway, when the yarn is spun they each usually, if only momentarily, become caught up in the humor that their brother or sister is looking down from a cloud and smiling. And because they know they don’t always remember… they naturally assume they already knew that, anyway. But had just forgotten.
The bottom line in this approach is the edge, the hurt, the pain of the remembrance of death doesn’t often arise! Depending upon the caregivers wit, it’s usually non existent!
On the other hand, the knowledge that their loved one is once again laughing with them often does come to the fore. This recurrent approach slowly… and painlessly …teaches them that so and so is safely in Heaven. Due to the reality they often don’t wholly identify Heaven with the finality of death, this approach provides within their ‘reality’… peace. (A moment or two after being advised the person they’ve just asked about is laughing with them, they’ve once again completely forgotten the conversation, anyway.)
Isn’t that a far more wonderful way Most of the time taking an approach of this style toward things of this nature is incredibly vital in your effort to preserve the generally peaceful permanence of the afflicted person. Particularly when the Alzheimer’s victim has close, but woefully ignorant ‘friends’ like John’s friend, Art. Bluntly, though loving and supportive to the degree he understands how to be, Art lacks a good deal of intellect as well as common sense.
Because John would regularly and quite fondly remember his brother, Mack, it was not uncommon to even hourly ask about him. Most of the time John would even believe Mack actually lived with him… so he would get up and walk around the house and even go outside to look for him.
Especially after Mack’s death, such questions and the desire to go look for Mack would persistently get on the nerves of Art. It wasn’t long after that ‘fatal’ phone call that Art would almost daily… all day long …become quite angry at John because of his constant inquisitiveness. That is, his questions about where Mack was and his room to room search for Mack. Art began to incessantly respond or even shout things like, ‘HE’S DEAD’. He died yesterday/last week/etc. I told you that. What’s wrong with you? Are you crazy? ‘HE’S DEAD’… HE’S DEAD… HE’S DEAD…. Can’t you get that through your head?’
Receiving such a barrage of painful words constantly proclaiming the death of Mack was time and time again… all day long …a horrifying experience for John to live through. Remember, from John’s perspective, each and every time he heard of Mack’s death it was the VERY FIRST TIME he had been told his favorite brother had died!
Worse than that though, was that due to the emotional impact Art would vest upon John, John would then quite naturally more often than usual remember Mack’s name… thus, more often ask about Mack. Due to John’s inquisitiveness and Art’s combativeness, Mack’s name would constantly be reintroduced to the fore of John’s brain. The quirk of the brain was that while he would remember Mack’s name, he would not remember that Mack was dead. So Art would once again, and again, and again bring Mack’s name up by angrily shout at John who would once again… ‘just find out’ …his favorite brother had died. A vicious circle was constantly repeated which, of course, lead to the continuing, and quite long term emotional pain John suffered. James’ immediate and extended family, while purporting by their words and actions the idea they understood Alzheimer’s disease, apparently hadn’t even elected to discover the most fundamental aspect of Alzheimer’s. That, being that a person afflicted with Alzheimer’s loses short term memory. Imagine! Both his extended as well as his close family members and siblings, while thinking they knew all they needed to know… hadn’t even gone to the most minimal task of attempting to discover the most basic condition of Alzheimer’s. Equally deplorable, it was as though they were touting themselves to be John’s ‘savior’ in light of the fact they did their utmost to, ‘save our brother and father John from his Primary Care Giving son’s nonsense’. All the while, the only thing they vividly succeeded in doing was to ensure their brother and father went through an exceedingly long period of recurrent, devastating pain.
Were John’s far removed children and his distant brothers and sisters wise? Or, were they astonishingly foolish in their own arrogance? Did not their own self proclaimed righteousness bring about continuing, extreme pain for John? Of course it did.
Friend, you simply don’t tell a person afflicted with Alzheimer’s anything at all thinking it is for the purpose of helping them to begin the healing process. It simply doesn’t work that way! Yes, if they live long enough in the state of constant horror that is repeatedly pronounced upon them, they’ll perhaps finally get it through their head their loved one has died. But, it’ll take a very, very, very long time because every single recurring exposure is a brand new revelation never having been experienced before! REMEMBER: Every single time the revelation is made it is a new experience! The question is, do you by your uneducated words and actions want to encourage their living their remaining years in a constant state of horror? Only people who’ve not been conscientious enough to have taken even the first step to step forth and learn and try to understand Alzheimer’s disease would venture toward such an idiotic, un-loving approach! As described above, there is another way.
Pure and Simple: During the first period of time when the Alzheimer’s victim is susceptible to such a high level of emotional pain, you must employ extreme care in when and how you tell the Alzheimer’s victim… anything. And never forget that he or she will most likely not remember they’ve once or multiples of times already lived through such heart breaking news. The HUGE problem with John’s siblings and children was… and remains …that in their personal and communal choice to remain completely ignorant of the facts of Alzheimer’s Disease… and it was, and still is their choice, John’s ‘do gooder family’ actually created the circumstances through which for a period of several… MONTHS …a tremendous amount of emotional pain was recurrently experienced by John.
His Dad and my Mom are like many, many people with Alzheimer’s. Due to their inherent love for others, they regularly, if not constantly ask how so and so loved one is. Certainly, their favorite brother, sisters, etc. regularly come to mind. Be very, very careful, Caregiver… if you maintain the same mindset as the foolish ‘do gooders’ noted above, you absolutely will become ever more instrumental in causing the afflicted person’s pain to return… over and over again. The Alzheimer’s afflicted person simply does not remember!
Therefore, each and every time one type of episode or other arises, you as the caregiver have the opportunity to choose: 1) You can enhance their life by shielding them from ignorant, foolish or even outright stupid people. And, you can also consider ‘spinning an appropriate yarn’ that will enhance their well being. Or, 2) You can assist in continually destroying their emotions by also acting the fool. If you find fault with the idea of ‘spinning a yarn’, by the way, stay away from people who are mentally or emotionally ill. The concept of ‘spinning a yarn’ according to the ‘heaven’ example just noted above… does …most of the time work and work well. That means that though there surely might at times be ‘new’ tears relative to the recognition that Heaven and Death might equate to the same thing, spinning a yard allows the person afflicted with Alzheimer’s to each and every time be SOFTLY brought through the remembrance. Without heartache!
It would have been far, far better for the person with Alzheimer’s if it had been left up to the Primary Caregiver… the principle person responsible for 24/7 care… to introduce he or she to the reality of a loved one’s death from the very first moment on. That which so easily proved to exert ongoing pain and suffering would then not have occurred in the first place. Does it really make sense that people who live 300 miles away and have made no contact for two plus years make the decisions on proper care?
One last thing regarding the support given to Jame’s by one of his immediate siblings. The sibling telephoned James one week prior to his taking his father for one week in order to provide James a small break. (He only did so because the other sibling was instrumental in bringing forth the embarrassing question of, ‘Don’t you love your father’.) During that phone call the sibling stated, ‘I know this is something you don’t want to happen, James, but I’ve arranged a family reunion with Dad’s sisters and brothers. The offensive letter you sent them was wrong and even though you don’t want them to meet, I think it is important… thus, the reunion’.
That sibling had never even spoken to James about the contents of the letter, nor attempted to discover what James’ true position was. Had he read the letter or asked James about it, the sibling would have discovered James adamantly pled with his Dad’s extended family to in fact visit, spend time with his Dad, etc. Unfortunately,the foolish sibling simply listened to the relatives who caused his father so much continuing pain and never once verified anything with James.
In any case, two weeks later as the sibling dropped his father back to the care of James he stressed up and down that he had been… always supportive …of James when discussing any matter with his neighbors, the extended family. Again, foolishly… not even remembering the telephone conversation two weeks prior in which he had stated the exact opposite. Sadly… quite sadly, James once again learned from that sibling’s own mouth that his or her words could never be trusted. So much for supporting the person providing 24/7 care for your own father. And inasmuch as the immediate sibling isn’t inclined to be supportive, how in the world can James expect anyone else to be? Words become meaningless when the fact of action becomes increasingly apparent.
Caregiver… I recognize this whole Page might well have been a ‘downer’ for you emotionally. It’s not fun to see how readily people puff themselves up and in so doing act so foolishly toward the destruction of one… much less a physically, mentally and emotionally ill person who has Alzheimer’s. It’s been a downer for me, as well. My association with James and knowing of his deep heartache throughout this ordeal doesn’t give me a smile, either.
I offer the above only in the hope that some family relative or close friend of some Alzheimer’s victim somewhere might come across this and perhaps gain a degree of insight with respect to the huge amount of damage and extreme heartache they could easily cause by not working with and through the Primary Caregiver.
FOOTNOTE: Its over three years now and not one brother or sister of John has come for a visit. And only one made one single phone call in all that time. John’s daughter provided care twice. A week each of two years. John’s son, as noted, had to be coerced into taking care of him for just one week out of the five years his father has been ill. So much for the extent of their touted ‘love’ for Dad.
Inasmuch as you might extrapolate any number of other hindrances you’ve experienced from your own experiences with ‘loved ones’, in order to continue to provide the best care you are able – you may wish to view…
‘The Buck Stops At The Alzheimers Caregivers Door‘
Another equally important avenue to pursue…
for the caregiver to encourage a victim’s peace and harmony?
The info mentioned in the article is some of the best available. RESPONSE… Thank you!