When I’m an old lady and end up in a care facility, I sincerely hope my personality and attitudes don’t relegate me to the category of “that crabby old lady in Room 210.” Have you visited someone in a nursing home or hospital and had the distinct feeling that the patients were treated like numbers or medical cases? You know what I mean: “the urinary tract infection in 4A” or “the decubitis in South 6.” Wow, that’s a horrible thing to consider for myself: the history of all my years on this earth being characterized as a medical condition or an intolerable behavior resulting from that condition.
What about my history of being a pretty darn good mother/wife/business person/neighbor/community volunteer/friend? Doesn’t that person still exist within the body occupying that bed?
Let’s all take the time to read this poem that depicts such a scene. Gender-wise, this could be about a crabby old man as well. Read the rest of this entry »
When your children attained the age wherein having “The Talk” about sex and other scary things became unavoidable, you simply jumped in and winged it – wanting to explain as much to your kids as they needed to know but trying not to lend any encouragement towards participation in said scary things. Didn’t you feel better once you checked that “To Do” item off your child-rearing list? I know I did.
“The Other Talk” is that which you need to have with your adult-sized children, regardless of how uncomfortable you – or your children – are about topics such as: illness, death, and finances. Acccckkkkk!
Or perhaps it’s the other way around. The adult children are broaching these difficult topics with their parents in the hopes that said parents will do something about these unavoidable issues. Regardless of who is on the receiving end of these discussions, they should be considered mandatory in every family.
Consider this scenario: Dad is dying of cancer and in a coma. Your mother has already passed on, and you have no idea what your dad wants. His cancer is inoperable and he’s having more and more difficulty breathing and he hasn’t had any nourishment by mouth since he went into a coma. Does he want breathing assistance? Does he want intravenous liquids and nourishment? Does he want pain medication to help him through the extreme pain that cancer causes, even if the medication hastens his death?
What’s a son or daughter to do? Wing it?
Let’s look at another scenario: Mom is in the advanced stages of Alzheimer’s and is unconscious more than she is conscious. There is no reversal possible of the debilitating effect this disease has had on her body: her doctor tells the family that their mother’s ability to swallow is greatly compromised, her breathing is becoming more and more labored, and she has shown no interest whatsoever in food or liquids. Her body is in the active stages of dying.
In this scenario, dad is still living and cognitively competent and he has told the family and your mother’s doctor that he wants every single measure possible to be employed to keep his bride of sixty-five years alive. You, however, have a copy of your mother’s living will/advanced health care directive – as does your father – which contains conflicting wishes to those of your father. Your mother wants no extraordinary measures employed – not a respirator, not a gastric feeding tube, no intravenous nourishment, nothing except for medication that will make her as comfortable as possible as she leaves this world. When your mother was fully aware and cognitively healthy, she had her wishes incorporated into a legal document, determined to take the responsibility of making such decisions out of her loved ones’ hands.
What’s a son or daughter to do? Follow mom’s wishes.
What a gift that is – carrying out your loved one’s wishes when she is no longer able to verbalize them. It would still be a gift if mom’s wishes were clearly spelled out that she wanted everything done to keep her alive as long as possible. The point is not what was decided that is important – it’s that the decision had already been made – a decision that remained in the hands of the patient/family member.
Both of my parents gifted me and my two siblings with documented specific wishes for their life and death. My mother unexpectedly died in her sleep on September 24th, 1994 at the age of 77 – something she had wished and hoped for her entire life – who doesn’t? My father died on October 13th, 2007 at the age of 89 from complications of Alzheimer’s and cancer. There was no guessing when it came to the time when us three adult kids rushed to his bedside. He was comfortable in his death, and we honored him by following his wishes for no intervention. Did I want my dad to die? God no. I wanted him to live forever; but none of us gets to do that, so I’m glad that my father was allowed to take his last breath and leave this world his way.
Dehydration and Dementia. The attached article is a very thorough look at the importance of hydration in the elderly, and how to assure that a person with dementia – who may no longer feel the thirst response and/or does not know how to express his or her thirst – is properly taken care of.
My husband and I went for a hike last summer during which we encountered a gentleman who I would guess was in his early 80’s. It was a warm, muggy day and my husband and I each had a 20 oz. bottle of water for our 3-mile hike. The gentleman was reviewing his hiking map and we stopped to chat with him about the fork in the road and which path lead where. “Sir, do you have a bottle of water that you can drink while on your hike today?” “No – not needed; I have a thermos of coffee waiting for me back at my car.” “I wonder, sir, with it being so hot and humid, if you might benefit from taking one of our bottles of water. I would be happy to give you one we’ve not used yet so you’ll be comfortable.” “That’s very kind of you, but I’ll be fine.”
So he went on his way but I told my husband I wasn’t comfortable with this fellow being on his own and could we please follow him at a distance to make sure he gets back to his vehicle. And so we did – and he returned to his vehicle, and no doubt partook of his thermos of hot coffee. Not very refreshing.
Although hot coffee and tea certainly contain water as part of their preparation, straight water – or even fruit juice – are a better option because of their lack of caffeine. Years ago, when I would visit one of my aging family members, you could always count on him holding that quintessential cup of coffee in his hand throughout the day. Regardless of the weather – no glass of water reached his lips – except perhaps when he took his daily vitamins or medications. This message is directed to those who provide care for the elderly, those who have older family members, and perhaps this message is also directed towards you. Drink good ol’ H2O. It doesn’t have to be packaged in a fancy bottle, you don’t have to purchase it, it’s always available at the touch of the nearest faucet, and you can access 100% water faster than making a pot of coffee.
What are you waiting for? Go get a glass of refreshing water!
The article above is from one of my favorite bloggers, Frangipani Singaporenicum. Her journey as a caregiver involves her mother. Her storytelling of what that involves is really quite genius.
This article addresses the question as to whether or not the person with dementia is the same person they were prior to onset of disease; and if they are not …
then who are they?
Once you’ve read her article I believe you’ll have a clearer perception of what dementia takes away – and leaves behind – during the progression of the disease.
The above link, from a December 2012 NBC News report, addresses the conversations that many of us – well, many of you anyway – still need to have with your parents. (My mother died in 1994, my father in 2007 – those conversations have long since taken place.) In many respects, my brother and sister and I were fortunate because in our family, the topic of sickness and death seemed no different from discussing that night’s dinner menu – perhaps even easier. That’s just how it was in our household growing up. But I’m aware that universally, that is not the case.
In my article Cost of Dying: planning for a good death, from advance directive to talking with your family, I’ve attached an exceptional article about a few people’s experiences discussing how their loved ones want to die. By now I may have lost some of you, but bear with me. There’s a reason why I’ve chosen to address this topic.
GIFTS. Who doesn’t like receiving gifts? Most of us get a kick out of being handed a package with a fully wrapped surprise within and told to “open it!” “What, for me?” Yes – for you. Perhaps the gift is something we didn’t expect, or we’ve sufficiently hinted our exact wishes and finally someone gifted us with that long sought after item. Fun, isn’t it? Someone cared enough to gift you with something you’ve always wanted or you receive something that you didn’t know you wanted, but it turns out, you do!!!
THE GIFT THAT KEEPS ON GIVING. A few years ago, I succeeded in convincing my wonderful hubby that we needed to put together our “last wishes” which of course includes a Will, but more importantly, an Advanced Health Care Directive. My husband is one of those who isn’t exactly comfortable sitting around the dinner table – or any table for that matter – talking about death. I get that – I really do. So I couched this discussion by talking about what a gift my parents, and his parents, gave their families by specifically outlining what to do when it came time to do something.
When your loved one is heading towards the great beyond, it’s comforting to already have his or her wishes on paper and ready to execute – no pun intended. I’ll use my father as an example. My father died at the age of 89 on October 13, 2007. Official cause of death was prostate cancer but advanced Alzheimer’s was a huge factor in his death. There is no way my father would have a) survived cancer surgery; and b) even wanted cancer surgery at that stage of his dying. His Advanced Health Care Directive very clearly stated his wishes and us three siblings had copies of that document and respectfully went along with his wishes. Dad saved us the stress of making an extremely difficult guesstimate of what he would have wanted in the midst of that situation. His dying was already an emotional experience so I can’t imagine having some sort of discussion about when to stop treating his illnesses.
The legal document, drafted years earlier, was drafted for this specific time. Even if dad had been conscious – and he was not – his dementia would have prevented him from making a well-informed decision. If ever there was a time when dad’s gift was ready to be presented – this was it. That gift allowed us to spend our last hours with him simply loving him; singing to him; and telling him how grateful we were to have him as our dad. Beautiful.
You don’t have to wait until you are 50 years or older to put your wishes in print. Old people aren’t the only ones dying who require some sort of affirmative decision-making. Someone in their thirties could be in a horrific vehicle accident and end up lingering on the precipice of death. A forty-year old person could have a stroke and be on that same precipice. It’s never too early to do something about your exit from this world as we know it. You can always change your mind later – you decide that you do, or do not, want hydration, so you revise the document. That’s the beauty of word processing – it’s changeable, and once you get that revised version documented by witnesses, you’re good to go! Literally.
If you choose to use an attorney, you can go through the local Bar Association for referrals or you can attempt the same outcome by doing it yourself. Many office supply stores have boiler plate legal documents you can readily purchase – but be certain to purchase the forms that contain the required legal verbiage for your state or territory. Additionally, organizations such as Compassion and Choices provides forms that you can download from their website, even a form that has a Dementia Provision. Who woulda thunk? Not me.
The Holidays may be over, but the season of gift-giving is not. Won’t you consider giving your loved ones one more gift this year?
My oh, my – such a difficult subject to broach with a family member when you know that he should put down the car keys and let others do the driving for him. The article linked above from NBC Nightly News is a good source of tips on how to handle this very familiar problem. I address this issue in my article: Driving with dementia: the dangers of denial. Although dementia is usually one of the most talked about reasons for taking away someone’s car keys, there are other reasons that are just as important that must not be ignored:
- Age-related slow reaction times;
- Medications that might cause dizziness and/or slow reaction time; and
- Impaired eyesight and hearing.
Not wanting to hurt a loved one’s feelings should not be the reason to avoid this subject matter. Let’s face it, your loved one’s safety and the safety of absolutely everyone else is at stake here. There are already so many dangers on the road with drivers talking or texting on their cellphones, driving under the influence of alcohol or drugs, doing any number of distracting functions such as eating, personal grooming, changing a tune on your I-Pod, or being distracted by children or dogs in the back seat. Now add someone who is impaired by age or cognitive disease and the risks to others increases greatly.
If you or a loved one are facing this important and difficult step, please read the attached NBC article linked above and also take the time to look at my article, Driving with dementia: the dangers of denial that provides encouragement for how you might take care of this very important matter of safety.