I’m reblogging this article I wrote in April of 2013 because it comes up in my blog stats as being extremely popular to many of you out there. I can only conclude that it’s popularity remains high because there are so many caregivers in the world who are tangled up in a daily life that centers around those with Alzheimer’s disease or other dementia. I hope many more will be encouraged – and pleasingly challenged – by what I have to say in this post.
Walk in Their Shoes… Just for a Minute. The attached article contains encouraging advice that caregivers worldwide need to read, and re-read, from time to time.
Those of us who have been caregivers to loved ones with Alzheimer’s or other dementia know very well the frustrations felt when we come to the realization that we’re not sufficiently equipped to handle that which this disease presents us. We’re walking in caregiver shoes, fully incapable of walking in those of the person with dementia. If we could, we would shriek at what we see and experience.
So we get frustrated – understandably so. We raise our voices in anger – and feel guilty immediately thereafter. We complain to others about the one we’re taking care of – because we crave to be heard and understood by someone!
Do not ask me to remember is a loaded statement and one which should give us pause. We know the person with dementia is not able to remember the previous five seconds, so why do we ask them to remember where and when they were born? Why do we think that repeating an answer LOUDLY AND WITH EMPHASIS will help the loved one remember this tenth time you’ve answered their same question? Why do we think they will understand our logical explanations about circumstances when their ability to understand anything requiring organization of thought is a function forsaken long ago by the brain that they’ve been stuck with?
Because we’re human – and we want order out of chaos, and we want the one for whom we are providing care to finally “get it.” And we want them to understand that this ain’t no cake walk for me so why aren’t you appreciating all that I do for you?
Because they don’t remember.
Click on the link above to read about one man’s journey from spousal caregiver to professional coach of those who are caring for loved ones with Alzheimer’s or other dementia.
During my time of caregiving, (my father died in 2007 from complications relating to Alzheimer’s disease) I oftentimes sought out the advice of anyone I could get my hands on who might a) lighten the emotional load I was carrying; b) lead me in the right direction when looking for next steps in the caregiving process; and c) let me cry a river as I pondered whether I was doing enough for the one for whom I provided care.
Way back when I was enmeshed on my caregiving journey, I was not aware that this type of coaching service was available – perhaps it wasn’t. What speaks volumes to me is that the prevalence of Alzheimer’s and other dementia is such that more and more people seem to be adrift and searching for that beacon of light that might pull them safely to shore.
One thing I know for sure, however, is that if it takes a village to raise a child, it certainly takes at least that when trying to take care of a cognitively challenged parent, spouse, sibling, partner, or friend.
The above public service announcement shines a spotlight on a disease that will affect you one way or another:
You may receive an Alzheimer’s diagnosis or I may receive an Alzheimer’s diagnosis
- A loved one of yours may receive an Alzheimer’s diagnosis and you’ll be his or her caregiver
- A good friend of yours; a neighbor; a coworker may receive an Alzheimer’s diagnosis
The point is – just as all of us know someone who has had, or currently has, cancer – all of us have some sort of connection to someone who has Alzheimer’s or other dementia.
None of us is immune to this disease that steals a person while their heart is still beating.
Lest you think that Alzheimer’s has nothing to do with you, look at the following statistics provided by the Alzheimer’s Association:
- By the year 2050, nearly one million new cases will be diagnosed each year – that’s one American developing Alzheimer’s every 33 seconds. Taken further, that most likely equates to nearly one and a half million new family caregivers each year – considering that at least one family member will be involved in managing a loved one’s care;
- Ten million Baby Boomers will get Alzheimer’s;
- On average, 40% of a person’s years with Alzheimer’s are spent in the most severe stage of the disease;
- The number of Americans that die each year from Alzheimer’s disease has risen 66% since the year 2000;
- Alzheimer’s is the sixth-leading cause of death in the United States;
- Today, there are no Alzheimer’s survivors – none.
Please take time to read the article I’ve attached above and consider the following: We are going to pay for Alzheimer’s one way or the other – now, or later.
This is a disease that will affect you, your children, your grandchildren, great-grandchildren, and beyond. Burying our heads in the sand won’t solve anything. Please consider donating to the Alzheimer’s Association as well as contacting your state’s congressional leaders asking for greater federal funding for Alzheimer’s research. Why? Because of this staggering statistic:
According to the National Institute of Health, the federal government currently spends much less money on Alzheimer’s research, prevention, and cure than on other conditions such as cancer, heart disease, and HIV.
- $6 billion for cancer;
- $4 billion for heart disease;
- $3 billion for HIV/AIDS; but just
- $480 million for Alzheimer’s disease.
I’m not comfortable with those numbers – are you?
The brief article, above, is one of admonishment and encouragement. Thank you my fellow blogger in Singapore for your extraordinary insight.
I think many of us can dredge up similar instances when someone responsible for the care of our loved ones dropped the ball. In my case, I flew down from Seattle, Washington to visit my father at a hospital in Oregon where he had been admitted because of a medical condition that had became acute in light of his Alzheimer’s disease.
I entered his room and saw him sitting up in his hospital bed, frantically rubbing his back on the stack of pillows behind him. “Dad, you look really uncomfortable. What’s going on?” “I don’t know,” he said, “but my back feels hot.” One look at my father’s back was enough to raise my blood pressure, and it takes a lot to do that since my BP is usually around 100/65. My father’s back was raw with welts. What he was feeling when he said that his back was hot was extreme itching.
I summoned a nurse – no small feat since it appeared that an old person with dementia in a hospital room was not as important as the other patients on the hospital floor. The nurse told me, “Oh, he must be experiencing an allergic reaction to the solution we used for his bath in bed. It’s the type of cleanser you don’t have to rinse off.” “Well, evidently, you do have to rinse it off! Look at the welts on my father’s back. He’s in misery! You have to get this dried soapy solution off him in order to relieve the itching!”
The nurse left the room, only to return a couple minutes later with a stack of washcloths. “Here, use these.” Then she walked out.
Left to my own devices, I drenched several of the washcloths in cold water, opened the back of my father’s hospital gown and proceeded to clean off, and cool off, his back. “Dad, this is going to feel real cold but it will make you feel better.” And it did. Ministering to my father in this way was a gift. I still wasn’t happy with the hospital staff, but I began to appreciate what turned out to be one of the final personal acts of caregiving for my father.
A month later I again flew down to Oregon, but this time, the cold washcloths I applied to my father were employed to bring down his temperature as he spent the last hours of his life in his assisted living bedroom dying. My father’s cancer – inoperable at that stage of his body’s vulnerability – had placed him in a stage of unconsciousness. As the staff alleviated the discomfort of his cancer with morphine, I lowered the fever brought about by the shutting down of his body’s organs.
A month earlier, what good would have come about if I had read the riot act to the nursing staff at the hospital? None whatsoever. Instead, I can be thankful for the gift of hands-on caregiving and comfort that I was able to provide my father while he was still alert and able to express his relief at having a cool, itch-free body.
I’m sad thinking about these incidents that occurred in the Fall of 2007, but I’m also delighted with having had the opportunity to minister so personally to my extraordinary father during the last weeks of his life.
A fellow Blogger, Frangipani Singaporenicum, submitted an excellent article, “Mom is Back,” about the hurdles experienced when her mother traveled by airplane back home after a visit with one of her daughters. Frangipani’s siblings weren’t fully aware of the breadth of their mother’s disease so they thought that the mother would be in good hands at the airport because they had arranged for an airport escort to get the mother to her airplane destination.
Unfortunately, what could go wrong did go wrong. “Frangipani’s” mother has mixed dementia, Alzheimer’s and vascular dementia, and found herself in unfamiliar surroundings when she became separated from the airport employee – a stranger in the mother’s eyes – who was supposed to assist her. Getting lost in an unfamiliar environment is something that comes quite naturally to those with any type of dementia. And as often happens when a person is lost, we try to get un-lost. That attempt brought her mother to another airline terminal where a kind gentleman, noticing her distress, found the assistance she needed to get on the correct plane at the right time.
Those of us who have children – and please bear with me while I make this comparison – know how easily a child can wander away from our purview. We make a quarter turn at the grocery store to get a box of cereal off the top shelf and “POOF!” our child is nowhere to be found. I’m very familiar with this feeling because it happened to me many years ago when my adventurous daughter wandered away – causing me near cardiac arrest – and was subsequently prevented from exiting the grocery store by a Good Samaritan grandmother who knew better than to let my daughter run out into the parking lot. “But I only turned away for a second!” That’s all it takes.
So too can a person with dementia wander away because of something that attracted him; or more likely, with your back to him, he didn’t recognize you any more and walked away to try to find you. “But how can I keep my eye on him at all times?” You just have to.
SOME TIPS OF THE TRADE.
Public restroom challenges. If you or your loved one needs to use the bathroom, find one of the family bathrooms that now exist in many public places so that your environment is controlled, and everyone’s needs are met. Don’t think for a second that you can say to your husband, “George, you stay here while I run into the ladies’ room. I’ll just be a minute.” Be prepared to call security when you come out of the ladies’ restroom because in George’s mind, you disappeared, and the time frame of a minute means absolutely nothing to him. And forget about sending your husband into the mens’ room by himself to meet his potty needs. You’ll be waiting, and waiting, and waiting, and he just a) may not do his business; and b) may not come out on his own. If no family bathrooms are available, stand at the entrance to the public restroom and announce yourself: “Woman entering with husband who needs assistance!” You’ll find that those within will cover up what needs covering and not call security on you.
Medic-Alert jewelry. The Alzheimer’s Association strongly recommends purchasing a Medic-Alert/Safe Return device which provides 24/7 emergency response service. At least if your loved one gets lost, they will be reunited with you sooner. This service is available in 50 countries, and in 140 languages. The service speaks for itself so please check the link attached to research the many benefits of this membership service that, quite frankly, brings priceless peace of mind and provides a healthy dose of safety for your loved one.
Now they see you – now they don’t. The examples cited above would not be complete if I didn’t add a personal experience from my days of being my father’s primary long-distance caregiver. My dad lived in a Continuing Care Retirement Community (CCRC) in Southern Oregon. When first diagnosed with Alzheimer’s he was very functional and remained in the assisted living apartment on campus that he had shared with his wife prior to her death in January 2007.
I stayed at a nearby hotel when I visited my father but spent most of the day with him on outings and/or spending time with him in his one-bedroom, one-bathroom apartment. At one point during an apartment visit, I announced to him that I was slipping into the bathroom, 10-feet away, and would be just a minute or two.
I was glad to have locked the bathroom door because partway during my “sit” dad was frantically jiggling the doorknob from the bedroom side of the door shouting, “Irene! Where are you?! Are you o.k.? What’s going on?!!” I was less understanding at the time and returned my own crazed shout of “Dad!!! Leave me be! I’m just going to the bathroom!!!” Knowing what I know now, I would have exited the bathroom and apologized for frightening him, and made every attempt to make him feel safe again. As Oprah Winfrey often says, “We do better when we know better.”
This unintended “peek-a-boo” event proved to me that my father did not have an understanding of the passing of time, but more importantly, that if he couldn’t see me, I wasn’t there. Back to the example of children, but this time, you’re the child.
You’re at play in your bedroom, having just left your mommy gleefully singing in the kitchen while she did the dishes. Your dolls are lined up on your bed, you’re engaging them in discussion, and all of a sudden you notice that mommy isn’t singing any more. You toddle out to the kitchen, and mommy isn’t where you left her!!! “Mommy! Where are you?! Mommy – I’m scared!!! Help me Mommy!!!!!” Your mother steps out of the adjoined laundry room and calms you down – “Irene, I was just five feet away; I didn’t go anywhere, I’m right here!” You run into your mommy’s arms and feel safe again.
Alzheimer’s and other dementia are very unpredictable diseases. What can be predicted, however, is that the onus will always rest on us to compensate for our loved one’s challenges. As I’ve mentioned in previous articles addressing dementia, we have the ability to adjust to the diseased person’s reality; not the other way around. It’s hard work for us, but it’s an impossible task for them.