Advice to an Alzheimer's Caregiver Partner Newbie

I am often asked, "What would you tell someone who just found out that their spouse or parent or friend was diagnosed with Dementia/Alzheimer's?"

My thoughts to myself, as I gather my about to be given "advice," is that there is a world of difference between a person's spouse and a person's parent. The relationships are different. The intimacies are different. The experiences shared are different. The way in which care will be delivered, both the caregiver's and the caregivee's needs are and will continue to be different.

With your parent, the relationship began when you were first born. It may have been an easy relationship or a difficult one. You had no choice as to who that parent would be and short of acting out and/or running away from home, you had no control over that relationship. Usually, the parent leads and the child follows. The parent has the power and the child has none.

It is said that the most important part of the parent/child experience is the child's slowly working to leave the parent and become independent. If you can do this successfully, the parent and child relationship can begin to move more towards one of friendship and mutual respect.

With your spouse, you elected to begin the relationship. There were the things you had in common, interests and experiences shared, and hopefully, the growth over time was two-sided. The passion and lust grew into love. The partnership was forged in a way that was negotiated, supported both your needs, your partner's needs, and the needs of your children if you chose to have them.

If you are lucky enough to have a successful union; you learn to live with the give and take, the shared responsibilities, the negotiations, and by taking the good with the difficult to provide a meaningful day-to-day way of spending your life.

I have discussed the two most important types of relationships one can have with another. But also one must look at friend and other family relationships as well. I'll not talk about this here but you can think through that on your own.

When Dementia / Alzheimer's come into the relationship with your parent, the responsibilities of "who is in charge" changes. With your spouse, the partnership slowly dissolves into a one-sided managed situation.

I have thought carefully about the differences if only because the day to day "advice" I would give for dealing with the situation, most likely would be defined or suggested by your relationship to the person who has received the diagnosis. I will not go into the types of thinking necessary for any of the different relationships but tailor my comments to anyone dealing with being part of the caregiving team created to support the diagnosis of Dementia/Alzheimer's.

But one more digression first. Most advice that I could give will seem trite. The person receiving the advice will most likely feel that I do not really understand their situation. For the information I might share to become real, the person must learn it, feel it, accept it themselves. One cannot tell another what to think let alone how to feel or what to do. One can only advise.

Hopefully, hearing some of this advice (and much of it is what I read about or have been told by others over time) will "light up" again once you have had time to process it, experience it, understand it, really need it. If you decide to own it as your own, then it will feel less banal and more applicable to you.

RESPECT the person. No matter what changes they go through. Find a way to help them continue to keep their "personhood" even as their abilities fail.

Be aware of the RIGHTS of the person diagnosed. As possible always respect their rights to be who they are, to make decisions for themselves or at least to participate in making those decisions, to live their lives in the ways they choose. Also be aware that sometimes and/or eventually, their rights must be disregarded but always must be done ethically, with love and respect, and only in their interests (not your own) for safety and health reasons.

BE PATIENT with the person. Their processing and understanding of the day to day activities of life, both mental and physical, are changing. The cognitive abilities are slowing down and/or the connections are no longer as easily made and eventually no longer exist.

CONTROL ANGER, as best as you can. Imagine that the person diagnosed is slowly living life backwards, losing what they have learned, and once again becoming more of a child. But what complicates the matter, is that they are becoming a child again but in an adult's body with an adult's worth of experiences and knowledge that will be at a wide range of various and changing levels of availability to them. How you would treat a very young child as they grow with wonder at the world around them is similar to how you must treat the person who is slowly losing this wonder.

REALIZE IT IS THE DISEASE, not the person who you are continuing to love and trying help. If they get angry with you, it is the illness. If they strike out, it is the illness. If they need you to repeat something for the hundredth time, it is the illness, not the person!

BE FLEXIBLE. As the diagnosed person's needs change, so must their environment change. Every day might need a different approach to almost every possible activity: toileting, grooming, eating, dressing, spending time, sleeping, etc.

Be SELFISH. Most people will be taken back by this term but I maintain that if you do not take care of your SELF, you will not have the energy or health to give to another. Find ways to relax, to refresh yourself, to get away for a short period of time, to make sure you visit your own doctor as needed, to enjoy yourself as you can.

ASK FOR HELP. This is a difficult one. First of all, it does not mean that you are weak or not doing a good job. Second, finding ways to involve other people who love you and love the person diagnosed is not easy. Everyone else had a life and most are oversubscribed. But there are ways that others can help to lighten your day-to-day.

YOU CAN DO THIS, what choice do you have, really. Hopefully, with support from family, friends, your religion if you embrace one, your therapist, your neighbors, a group of people in a support group or online chat room ... you can find a support system that works for you. You will be strong and find resources to keep going. Love will help. Kindness will help. Being good to yourself even though you are devastated will help.

YOU ARE NOT ALONE. So many others, in the U.S. over five and a half million are living with Dementia / Alzheimer's. Sixteen million people are in addition to their own self, providing care.

WAXING PHILOSOPHICAL: It will "GET BETTER" ... but sometimes better is not on this side of life. We all will die. For some of us, it will be easy, quick, and/or unexpected to die. For others, it will be anticipated, slow,  and/or very painful to die.

Usually, the parent wins the race to death. With a spouse, one or the other will win the race. Interestingly, the person diagnosed with Dementia does not always win the race! For everyone, we will grieve the loss of someone we love. Talking about death helps, in the long run, to ease the mystery of death. Conversations with the person dying and being there for and with them helps.

The biggest mystery of life is death. We think about it and fear it from the first time, as a child, we begin to have intelligent thoughts. Hopefully, its mystery also allows us to live a meaningful, fulfilled life with respect, love, and understanding for others.

YOU CAN DO THIS!

INTERNATIONAL DAY OF PERSONS WITH DISABILITIES 2018

Welcome to

INTERNATIONAL DAY OF PERSONS WITH DISABILITIES 2018

especially in this post as it relates to those diagnosed with Dementia, Alzheimer's, and the other diseases associated with Dementia: 

Alzheimer's, Vascular Dementia, Lewy Body Dementia, Parkinson's, Frontotemporal, Creutzfeldt-Jakob, Wernicke-Korsakoff, Normal Pressure Hydrocephalus, Huntington's Disease, Mixed Dementia, and Other Causes

These are some of my thoughts in relation to my friend Kate Swaffer's current post on the progress we are making in the world with regards to understanding, diagnosing, and supporting those with Dementia.  CLICK HERE TO SEE KATE'S POST. Opens in a new window.

I always feel a little traitorous in making the kinds of comments which follow as I DO NOT want to undermine the good work going on of making things better for those diagnosed and for those who love those who have been diagnosed with Dementia. I do not want to ignore the progress that is being made. In my own experience, when Gregory (my 41 year life partner) was first diagnosed in 2003, the stigma of the diagnosis was still so strong and so little known about it.

But having lived through 12 years of Gregory and my journey with Dementia, most likely Alzheimer's, I cannot let go of what went into making the middle and end stages of the disease manageable, tolerable, safe from harm, as close to normal as we could get it, and the struggles we worked through. P.S. We did not SUFFER!!! Hate that idea! We worked very hard and our life was filled with love and life!

I always said that Gregory was not a VICTIM of Alzheimer's but rather a HERO! Recently I have been able to say that BOTH GREGORY AND I were not VICTIMS but rather HEROS! As in all things, it is better when there is more than one working together to deal with any life threat.

HOW WONDERFUL AND HOW MUCH WORK HAS GONE INTO: "The World Health Organisation" .... stating .... "Dementia is one of the major causes of disability and dependency among older people worldwide"(2018).

AMAZING AND SO MUCH PROGRESS THAT: "It also now defines dementia is a condition causing acquired cognitive disabilities."

ALSO SO TRUE THAT: "as dementia progresses, our disabilities are likely to become more obvious, although this seems to be the lens through which dementia is still being viewed (late stage)."

AND YES: "This is relevant, in light of the global campaigns to make our communities 'dementia friendly', as what we want has little to do with being friendly, and everything to do with inclusion, and therefore access, including access to adequate health care, and disability support including rehabilitation (cognitive and physical).

AND WHAT AN IMPROVEMENT TO QUALITY OF LIFE AS: "People with dementia have definitely become empowered, and are working together locally, nationally and globally to ensure dementia is not only listed on websites as a condition causing disabilities, it is a condition where we will, at the time of diagnosis, be provided with adequate disability assessment and support to maintain independence for as long as possible, not just assessment of our Activities of Daily Living (ADL's), and which will also include rehabilitation."

WHAT STILL SO GREATLY CONCERNS ME, HOWEVER: Is that Dementia is incurable and increasingly causes the acquired cognitive disabilities to get in the way of quality of life, including independence and safety and the ability to successfully function on a day to day basis.

WHAT BOTHERS ME STILL: is that the caregiver partner without the diagnosis is often discounted out of concern for what the caregiver partner with the diagnosis goes through. I do not believe one can win the "which is worse" prize in this contest. As we used to kiddingly say, "On a scale of horrible to horrible, it is terrible for both of us." But with love, understanding, respect, and educating oneself, one can persevere and prevail. 

The joy outweighed the sorrow and the laughter outweighed the tears!

ALSO, I HAVE NOT COME TO GRIPS: in dealing with the "rights" of the person with Dementia. It seems to me that sometimes those rights must be forfeited (only, of course, if done with the person with Dementia's best interests always in mind.) A key factor here is that those rights must not be removed too soon or if they can be improved with compensation and support and definitely with trying to keep the person involved in those decisions if they are still able.

LATE STAGE DEMENTIA IS AN INEVITABILITY:  and as a "world," on this World Day of Persons with Disabilities, we are doing still such a terrible job of making the Late Stage Dementia Journey as comfortable as possible for those diagnosed, as well as for those who love and care! 

YES, WE NEED TO CONTINUE WORKING ON MAKING CHANGES ON THE STIGMA AND INAPPROPRIATE APPROACH TO DEALING WITH THE DISEASE IN THE EARLY AND MIDDLE STAGES: but we cannot assume that those changes will improve anything as it currently exists during the late stages. Therefore, I believe that hand in hand with discussing changes in the diagnosis early stages, at least a "nod" must be present to the difficulties and changes necessary during the late stages.

Family, friends, and many medical and social support services do an increasingly better job helping those diagnosed to keep their visibility and their independence; to accentuate what they are able to do and not the abilities that have been lost; to do so with understanding, love, and respect.

So maybe the best I can hope for is that if the BEGINNING GETS BETTER the END WILL BE MORE TOLERABLE AS WELL?