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Beauty in the Breakdown – You Sure?

This resonated deeply with me. Music is such a powerful force in our lives. Since Mama died, there is much music that we shared throughout our time together that I simply can’t listen to without tears flooding my eyes as memories run their movies, crisp, clear, and vivid through my mind.

Unlike Kay, I’m not a big fan of techno-pop, preferring alternative, indie, and grunge, but I listen mainly to Radio Paradise, an internet music station that plays the most diverse range of music that I’ve been able to find, and they have played “Beauty in the Breakdown” by Frou Frou.

Ironically, it caught my attention the first time I heard it as well. I immediately saw the double meaning in my own life.

Mama’s breakdown. There was no beauty to that to be sure. However, there were beautiful moments throughout the journey. Two are prominent in my mind, when in the middle of all the chaos, confusion, and pain, Mama was delightfully Mama again. I’ve never been able to explain the timing, however, because both were just before big changes. One was the Saturday morning before Mama’s breakdown several hours later and the other was the Saturday and Sunday morning before Mama went into her death sleep in the early hours of that Sunday afternoon.

My own breakdown after Mama’s death. Beauty? It certainly doesn’t seem to be true on the surface.

I’ve never been a visibly emotional person. I worked hard, diligently, painstakingly at “controlling” my emotions all my life. I have always been very deeply affected by things and people and situations, but I found ways to keep a tight lid on that so it never showed and built fortresses around myself to protect myself.

Those fortresses began to crack after Daddy died. I never knew how deeply, how long, and how hard grief could be. I also never knew that the hole left in a heart from losing someone you love never heals completely. But I had Mama to take care of so it helped me move on quickly, burying, I think, much of what I was trying to come to grips with, and get back to the business at hand. She needed me, and that was more important.

But when Mama died, the very foundations of those fortresses seemed to have collapsed. It seems that every emotion I suppressed, hid, buried, ignored decided it was time to deal with it. All at once. In an overwhelming flood that has been difficult, to say the least, to try to sort through, make sense of, and get past.

These days, it seems I can barely speak a sentence without my voice cracking and tears welling up in my eyes. It seems as though everything is right beneath the surface waiting to just spill out without warning. I have cried rivers of tears and yet there seems to be no end to how many rivers are left. I keep thinking at some point there just can’t be any more tears, and then they come again.

But although right now I seem to be drowning in this ocean of tears, I recognize the beauty in it. Because there is some healing in the process. I’ve learned that sometimes to fix something that’s not working right or well, you have to take it completely apart, and put it back together the right way, piece by piece. And that takes time.

And, like Kay, I do recognize this about myself: “I recognize that I’m a much kinder, gentler version of my former self. For that I’m grateful.”

Dealing with Dementia

letgo Music uplifts my mood. It helps me focus and makes me happy. I will typically be listening to techno-pop — it’s better than caffeine if I want a pick-me-up.

I first heard Let Go by Frou Frou when watching Garden State (I thought it was on at the closing of an episode of Gray’s Anatomy — a show I never really watched, but Internet sources won’t validate my recollective memory on that point). It’s been in my head, but never on my iPod, so I finally downloaded it last week. I like the tune and the focus on “letting go and jumping in.”

However, today this song brought me to tears as the words hit me very differently. For a few weeks I’ve noticed a decline in my Mom. When I arrive at her community she is in the living room playing bridge with a new group of residents. Now…

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Siblings, Gratitude and Aging Parents – AARP

Unfortunately, more times than not, siblings do not share equal responsibility for caregiving for our parents with dementias and Alzheimer’s Disease. Sometimes it’s a simple matter of physical distance: they want to help, but they are too far away.

However, that is generally not the reason.

Parent-child relationships are complicated from the get-go and each child makes a conscious decision whether to maintain a close relationship or not with his or her parents as an adult (usually as soon as he or she leaves home). These are heart decisions.

For siblings, much of whatever the tenor of their relationships were growing up extends into their relationships as adults.

However, one of the complicating factors is real and imagined grudges and resentments (known or unknown) by siblings, often from perceived wrongs that occurred all along the way of their lives, that are nurtured and grow into full-blown anger and disconnection from each other and from the family.

This happens disproportionately more often than it doesn’t, but if caregivers find themselves in the rare position of having supportive and engaged and grateful siblings, then they should count their blessings. 

Mom & Dad Care

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If You Needed Help, Does Anyone Have What They Need From You to Step Up to the Plate?

Kay Bransford and I seem to be on the same page a lot these days, but I see that we seem to be the only ones willing to tackle these subjects, so I guess we will keep sounding the drums that all of us need to be preparing in advance for the possibility that something – whether it’s Alzheimer’s Disease, dementias, other life-threatening illnesses, or simply time and chance – could suddenly and dramatically or slowly and insidiously render us incapable of taking care of our own affairs.

It seems to me that the very thing we try most to avoid thinking about, talking about, planning for is the very thing that will eventually happen to us all. And that is death.

Denial is, in my opinion, stronger and more pervasive in this area of life than in any other. “If I don’t think about it, then it isn’t real” seems to be the underlying thinking of this denial. I’m here to tell you that all the denial in the world won’t take away its inevitability of happening.

None of us, except those who chose to usurp God’s will and end their own lives, know how or when we’re going to die.

I believe most of us assume it will be quick and instantaneously, but the reality is that, in all likelihood, most of us will probably have a period of decline in which we will need help handling our financial, legal, and medical affairs before we take our last breaths.

And, after we take our last breaths, someone will have to take care of getting us buried and ending our financial, legal, and medical status among the living.

Who would that be for you? Yes, you, the one who is reading this post. Do you know? Does that person know? If that person knows, have you made this as easy as possible for him or her by doing your part and making sure he or she has everything he or she needs to do what needs to be done?

Or, because you don’t want to think about it or talk about, will that person have the burdensome responsibility of trying to figure it out all on his or her own?

We say we don’t want to be burdens to our loved ones. By taking care of this, you and I – we – have taken a big step toward easing the magnitude of that burden that, if we live long enough, will be shouldered by our loved ones.

I did my first will and living will shortly after I turned 21. I had just graduated from college, but not before having a very serious car accident (one that I miraculously survived with some significant injuries, but nothing like what I should have suffered) just before I graduated.

I’d never been that close to being face-to-face with death before, but it made me realize that I needed to make sure that my affairs – and they were paltry in those days but even then I had life insurance – were in order for the ones I’d leave behind.

From that point on, I have been meticulous about keeping my will up-to-date, the beneficiaries on my insurance policies up-to-date, and all the information my executor will need to take care of things up-to-date. I added a DNR to my medical wishes about 20 years ago, I got my cemetery plot 15 years ago, and I wrote out my funeral service and burial wishes about 10 years ago. 

Additionally, my executor has updated access and account information to everything online and offline to finish up my earthly affairs when I’m gone.

preparation-death-alzheimer's-disease-dementias-age-related-illnessesThis, in my opinion, is the last act of kindness I can do in this physical life. It is also one of the greatest.

Mama used to worry that something would happen to me (i.e., that I would die before she did) and then about what would happen to her. There were times in our lives together that could have been a possibility, but I always reassured her that I’d be there with her to the end. And I was by the grace of God.

Of my parents, Daddy was a paradox when it came to this subject. On the one hand, he had life insurance that would take care of Mama after his death and he insisted, in the year before his death, that Mama get her own checking and savings accounts and get credit cards in her name only.

On the other hand, there were other areas in which he had great difficulty facing his mortality. I remember Mama suggesting that they start getting rid of clothes and other things they weren’t wearing or using anymore and Daddy’s response: “the girls can take care of that.”

The will that Daddy had in effect, until shortly before his death, was the one that he had drawn up just after he and Mama adopted us. None of the information was pertinent or relevant anymore.

After much and extended (I’m talking a couple of years) discussion between Mama and him, they finally went to a lawyer, about six weeks before he died, to have a current will drawn up.

Mama was just the opposite. Somehow, I think all the deaths of close and beloved relatives in her early years made the inevitability of death more real to her. She, primarily, during our growing up years, talked on a regular basis about what would happen to us if she and Daddy died and how we needed to take care of each other and be good kids so the road without them would be easier for us.

Not long after Daddy died, she and I sat down together (I was now checking in daily and helping her navigate through some of the things that Daddy had done and offering advice and assistance as she needed it) and she told me what she wanted – and didn’t want – as far as end-of-life wishes.

We went to an attorney together and she did a will (which she later changed to a revocable living trust), living will, and all the POA paperwork. I had copies, she had copies, and she put copies in a safety deposit box at the bank.

At that time, I didn’t need or want knowledge or access to her financial accounts, but as time went on, she needed more of my help in dealing with them, so she gave me access to get into the accounts and help her (we always sat down and did this together until she wasn’t able to anymore) keep up with bills and what she had. 

By doing this with me, Mama made things much easier for me when the time came that I had to step in because she couldn’t do it.

I can’t thank Mama enough for her foresight with this gift. Instead of having to focus on everything brand new coming at me at once, I could focus on what was most important, and that was Mama: loving her, caring for her, being there for her.

The last couple of months Mama was alive, we’d be sitting close, holding hands, and talking and suddenly she’d say “I don’t want be a burden on you,” with tears rolling down her cheeks. I’d squeeze her hands and pull her closer in a hug, kissing the tears away from her cheeks, saying, “Mama, you’re not a burden to me. I love you unconditionally. I wouldn’t be anywhere else doing anything else but right here doing this with you.”

Mama would relax in my embrace and I would hold her tighter as I said these words because they were true and we both recognized that they were true, but most of all, I recognized how easy Mama had made things for me by equipping me with what I needed to step in easily and take care of the routine things so that I could save my energy, my focus, and my love for taking care of her.

Lessons We Learn from Caregiving for Our Loved Ones With Dementias and Alzheimer’s Disease

In Nick Norton’s blog post, “10 Things Caregiving Taught Me in 2013,” he lists some of the things he learned from caregiving, along with his mom, for his grandfather who suffered from Alzheimer’s Disease (his grandfather died in June 2013). 

Several of Nick’s lessons resonated with me from my own experiences caregiving for Mama the last several years of her life as she suffered with congestive heart failure, vascular dementia, Lewy Body dementia, and Alzheimer’s Disease. The lessons I learned were ones that I could not have learned any other way or through any other of life’s experiences.

That makes them priceless, although I would not have ever wanted Mama to have to go through what she went through so that I could learn them. However, I consider these lessons that I learned as Mama’s last and lasting gifts to me, giving to and helping me, as she wanted to and did with so many other people throughout her time on this earth.

One of the lessons Nick and I both learned is that until you’ve been a caregiver for a loved one with dementias and Alzheimer’s Disease, you will never be able to fully understand what it entails.

In the caregiving realm, it is a unique experience. Not only are you dealing with normal aging issues and health concerns, but you are also actively losing a family member – a mentor, a matriarch, a patriarch, a counselor, a beloved friend – while he or she is still alive (in these neurological diseases, we actually lose them twice).

Unlike caring for and raising children, our loved ones with dementias and Alzheimer’s Disease regress instead of progress. Their communication issues increase instead of decreasing. Their complete dependence grows instead of declining. Their vulnerabilities, fears, and anxieties of a lifetime on this planet come back around in full force as their worlds get smaller instead of the dissipation a child experiences as his or her world gets bigger. Their suffering will never get better. Instead, it will increasingly get worse. There’s no way to fix it, no hope for improvement, no expectation of positive changes.

It is truly a 24/7 responsibility. There is no down time. And each journey is unique, so as caregivers we are constantly responding to and adapting to surprises, to the unexpected, to the unknown. It can be both extremely mentally and physically exhausting.

Lessons Learned From CaregivingThe whole experience can be a very difficult thing to actually wrap your mind around, to alter your thinking to adapt to, to, in short, accept and roll with on an even keel. In my experience, this is next to impossible for many people to do, deal with, and stay with for the duration.

That ability is one of the many things that makes caregiving for our loved ones with dementias and Alzheimer’s Disease unique. And it makes those of us who choose to do this unique.

Another of the lessons that Nick learned was to pray regularly. Although I’ve always prayed regularly, it was through caregiving for Mama that I really began to understand and practice Paul’s exhortation to pray without ceasing and Peter’s reminder to cast all my cares on Him.

My prayers became more continual, more deeply personal, and my relationship with God more intimate and more strong, as it remains and continues to grow in to this day and I intend for it to remain and grow in for the remainder of my life.

And looking for the joy in life was another lesson that, like Nick, I learned while caregiving for Mama. There were moments that we had the privilege of sharing together during those years that brought both of us joy and still make me smile when I think of them.

However, I find it much more difficult to find the joy in life in general now that Mama’s gone because it seems that life has gotten a lot harder for me since Mama’s death.

It’s proven to be extraordinarily difficult to find a smooth, seamless, and meaningful transition to the next phase of my life in the absence of being needed, useful, and worthwhile while caring for Mama.

These days,I frequently ask God that if I don’t have any more value in this life if He will just mercifully end it and give me the peace of death until the next phase He has planned for me (so far, His answer has been “no” and I have to accept that until He says “yes”).

But I still try to remind myself to look for joy, even if seems elusive and gone for good, at least in this phase of life for me.

There are life lessons each of us as caregivers for our loved ones with dementias and Alzheimer’s Disease will learn. Let’s remember not to get so caught up in the day-to-day, some of which will be sad, trying, frustrating, and full of epic fails, that we miss the bigger picture of what we’re being given the unique opportunities to learn and grow from.

What Not to Say to A Caregiver of Our Loved Ones With Dementias and Alzheimer’s Disease

While this article gives brief explanations of what and why you shouldn’t say certain things to caregivers of loved ones with dementias and Alzheimer’s Disease (and any other chronic age-related illness), I would like to focus on being mindful of what we say to caregivers who are taking care of loved ones suffering from dementias, Alzheimer’s Disease, and/or other age-related illnesses. The human proclivity is to talk without thinking and my hope is that, with this post, we’ll all slow down, take a deep breath, and think before we speak.

As difficult as it may be to comprehend in our multitasking, “have-it-all, do-it-all,” split-second world, once we chose to become caregivers, our lives stop in many ways and we have a single focus: taking care of the loved one(s) entrusted to our care.

This has become an anomaly in our 24/7 digital, connected, always-on society. Personally, I believe it is why caregivers often find themselves alone in taking care of their loved ones. Siblings, friends, and other family just can’t slow down, disconnect, and, yes, sometimes, can’t be bothered with the labor and time-intensive task of caring for a loved one.

11-things-not-to-say-to-a-caregiverAgingcare.com posted a list of things not to say to caregivers of our loved ones with dementias and Alzheimer’s disease.

I always add caveats to these black-and-white statements, so please know that I understand there are many circumstances, sometimes way beyond our control, to be an interactive part of the caregiving process.

What I am talking about here are the able, the capable, but the unwilling and unrelenting people within the circle of our lives who could, but won’t step up to the plate, but who often are our most vocal critics. 

But this post isn’t a diatribe against these people. There are  a lot of reasons for why, some of which I and all the other caregivers out there will never understand, and accepting that is part of building character. It is what it is. Anger, resentment, and bitterness don’t hurt anyone but us and our loved ones, so please don’t let any of these take root and let them become who we, as caregivers, are. 

This post is about what we all should be mindful of not saying to caregivers of loved ones suffering from Alzheimer’s Disease, dementias, and/or other age-related illnesses. It is about thinking before we speak and putting ourselves in someone else’s shoes. It is about sensitivity, care, concern, and love.

Most of the people who say some of these things listed in “11 Things You Should Never Say To a Caregiver,” have never been caregivers for loved ones and would never consider being caregivers because it would mean they would have to sacrifice their lives, give up what they want to do, put their own goals and ambitions aside – and risk losing their place and relevance in their careers, their social networks, their lives as they define them (and when a person makes the choice to be a caregiver to a loved one first and foremost, it dramatically, and not always positively, changes his or her life in all these areas both on a short-term and long-term basis).

I get that. Once upon a time in my own life, I was all about me, about my career, my success, my move up the corporate ladder. Every career move I made was a step forward, carefully planned (and blessed and allowed by God, much like Jacob in his life [reading through Genesis in the last week or so has made me realize how similar my view of myself is to Jacob’s view of himself until he hit critical mass and realized that he was the beneficiary of God’s blessings, much the same position I find myself in now]) even in spite of, many times, my arrogance and belief that it was all me – my talent and ability moving me ahead.

But always, and this was perhaps the thing that somehow, in spite of me, kept me grounded, I was deeply connected to love, responsibility, and obligation to my family, especially to my parents. Daddy and Mama sacrificed a lot to adopt us kids. They, in their own ways, both gave up more lucrative careers to build a family with us.

I bonded with these two people who chose me when they could have chosen anyone, and in spite of our rocky places, our mutual lack of understanding at times, our frustration with each other because we couldn’t find common middle ground at times, in the end, we loved each other unconditionally, and it was that unconditional love that tied us together no matter what.

So, when my time came around to complete the circle of life, I failed Daddy more than I failed Mama. I still, when Daddy was so sick, had not quite gotten beyond what I wanted and the idea that my life was all about me.

I will regret that the rest of my life and I will regret that I didn’t know what I didn’t know about what Mama was going through after Daddy died. But I didn’t know. Some lessons take time and they take longer to effect the changes that I wish could have happened sooner.

It didn’t then. It has now.

I’ve had to make a lot of peace with myself and with God (and, at times, still find myself making peace with myself and God as I realize where I let both Daddy and Mama down, unknowingly along the way) that I was younger and just didn’t get it the way it was back then. I did the best I could, although I wish I’d done better and more, in spite of the limitations of understanding, of experience, of knowledge I had then.

Time is both a curse and a blessing. In the middle of time, we don’t have a clue. We move through it blindly, occasionally having flashes of light and inspiration and understanding, but never really grasping it fully. After that time has passed, we have time to think, to reflect, to dissect, to analyze, and it is there that we gain wisdom, understanding, and often times, change for the better. It is never an easy process in either circumstance, but if we learn from it, then it brings about permanent and positive changes.

 A few months before Daddy died, he and I sat down, face-to-face, at the kitchen table thatMama and Daddy had been the gathering place for our family from my earliest memories. We held hands. He asked me to promise him that I would take care of Mama when he was gone. I promised him that I would.

I knew that day that Daddy didn’t have much time left. His heart function was very low and there were no options left for him to change that. It was the last time I would see him alive. He died about three and a half months after we had that conversation.

Daddy’s death was probably the beginning point of my stepping up to the caregiving role for Mama. There was a protectiveness for both of them that I’d had since I had graduated from college, gotten a job, and was in a position to help them through the rest of their lives, no matter how or where they needed the help.

After Daddy died, that protectiveness took hold much more deeply with regard to Mama. Something in me changed and I realized I was willing to do whatever it took to make sure Mama was okay, safe, secure, and comfortable. Although it took time for me to be willing to give up everything and make Mama the physical priority in my life (and I did), the root of that decision took hold the day Daddy died.

Along the way, after Daddy’s death and as Mama progressed with vascular dementia, Alzheimer’s Disease, and Lewy Body dementia, I heard many of the eleven things you should never say to caregivers.

Fortunately, by the time I heard them on a regular basis, my commitment, my focus, my life, on a physical level, was completely dedicated to Mama being where she wanted to be (and where I wanted her to be), which was at home with me, and I actually, once I got over the initial “how could you even say that?!?” reaction I always had, learned to just let it go.

In the end, when we come to these decisions and choices with our loved ones with Alzheimer’s Disease and/or dementias, we have to get thick skins and realize that most of the things that people who have never been through this say are not malicious, not unkind, and not critical, but are simply a product of inexperience, ignorance (and I don’t mean that in a bad way – no one can know what they don’t know), and a lack of understanding. 

This, for me, was where I really learned about not being easily offended, about forgiveness, about compassion, and about mercy. Good lessons. I still have a lot to learn, but I’ve made progress.

So the list of what not to say is provided here as a guide, an educational tool, an effort on my part to offer experience to those who don’t have experience, to teach those who don’t know, to provide understanding those who may not understand.

It is not a criticism. It is not a condemnation. It is simply another step to bridge the gap, which this blog, in part, was created to do, so that we all know a little more, understand a little more, and can help a little more as we interact with those caregivers of loved ones with Alzheimer’s Disease, dementias, and other age-related illnesses among our friends and our family.

VA Assisted Living Benefit (Aid & Attendance) for Military Veterans and Their Spouses

va aid & attendance Alzheimer's Disease Dementia CaregivingI discuss this benefit in great detail in my book, Going Gentle Into That Good Night, as far as what’s needed to apply, some caveats with regard to obtaining military records, how to expedite the process, as well as how to calculate the full cost of care.

But, I wanted to at least mention here that a Veteran’s Affairs benefit for military veterans and their spouses for help with assisted living costs is available if the veteran served during a war (WWII, Korea, Vietnam, etc.).

To take advantage of it for our loved ones with dementias, Alzheimer’s Disease, and other age-related illnesses if they are eligible by going to the VA’s Aid and Attendance page.

Dying Wishes – The Discussion Everyone Needs to Have with Their Loved Ones Long Before They Need to Be Honored

Ellen Goodman is one of my favorite essayists and authors. My first exposure to her writing was an essay entitled “The Company Man.” Even though I was just 16 years old when I read it in my AP English class, it had a profound impact on me. I still often think of it when the days and nights of life get long, hectic, and overwhelming and it helps me to step back and do, if nothing else, a little reset to get my priorities realigned.

Therefore, when I read her post on the living-or-dying decision-making (and second-guessing) she had to do for her mom when Alzheimer’s Disease had forced Ellen to be the decision-maker, I found it very interesting.

And familiar. Because even if you’ve had “the conversation” many, many times, I think second-guessing, especially toward the end of life when push comes to shove, is inevitable.

Mama and I had talked in-depth about her dying wishes for years and we had the documents and the paperwork done well in advance of her dementias, Alzheimer’s Disease, and congestive heart failure diagnoses.

Living will - dying wishesShe had a living will with no extraordinary measures, as I do. And she decided on a DNR after Daddy died without one and she saw first-hand the effects of futile life support that he had to go through in that last hour of his life because he didn’t have a DNR.

Even though Mama was a medical professional, as was Daddy, I believe the impact of seeing her soul mate and best friend go through being kept artificially alive even for that short period of time was profound and life-altering for her.

We talked about it a lot right after Daddy died, and I told her I had a DNR and had gotten itDNR (Do Not Resuscitate) in my early 20’s and I told her why I had (and still have) it. It made sense to her and we had her doctor draw it up and certify it.

As Mama’s heart health declined, we continued to have conversations about what she wanted and didn’t want as far as quality of life versus quantity of life.

We were so much alike in our very strong views that quality of life was what was important and not quantity (and this really is the core issue that must be addressed and resolved as part of the dying wishes conversation) that we never disagreed on care, treatment, and outcomes.

But it was because we had these heart-to-heart talks a lot in the last years of Mama’s life and we openly and frankly discussed death as the inevitable outcome and how Mama wanted that to be, as much as was within her control. 

When Mama told me she didn’t want to go to the hospital anymore for treatment for her congestive heart failure, I honored that wish, despite the frantic response about liability from the nurse on the phone when I called to have Mama’s doctor give us a prescription for the medicine (Lasix and potassium) and a schedule so that I could treat Mama for it at home.

The doctor ended up calling me himself and he got Mama in the next day to the office and gave me the prescriptions and schedule to do at home with a follow-up visit within the week with him. And we continued to do this at home until Mama’s death. That’s what she wanted and I was determined to make sure that her dying wishes were honored.

The issue came up again three months later when, on her birthday, Mama started throwing up in the afternoon and had chills and sweating. I wasn’t sure whether the symptoms were heart-related or not, so I took Mama to the ER. She had a gall bladder infection and after we were transferred to a bigger hospital early the next morning, a gastrointestinal surgeon came in and tried to talk us into putting Mama under general anesthesia to remove her gall bladder.

I refused that because I knew with Mama’s weakened heart, she wouldn’t survive it and told him we needed a Plan B. He reluctantly said they could put a drain in with local anesthesia to drain the infection out, but that reinfection was likely within a year. I realized even then that Mama’s health was such that it was unlikely that she would live long enough for a reinfection to occur, so after she and I discussed it, we agreed to the drain, which was successful in removing the infection.

It wasn’t until the very end of Mama’s life that I did any second-guessing. I knew logically and intellectually what she wanted and I was committed to honoring that. And I did.

But most of my second-guessing came in the form of wanting to be sure that I wasn’t overreacting as death approached and that once it was clear that Mama was in the dying process, I wanted to be sure she wasn’t suffering and I didn’t know how to gauge that (she wasn’t and I know that now, but it was paramount on my mind then).

The reality is that, with appropriate comfort care during the dying process, it’s harder to watch someone die than it is for them to actually die. Because we watch our loved ones die with all our senses intact, all our systemic functions intact, and all our alertness intact and it’s almost impossible to not project our intact selves into the process.

And that is why having the dying wishes conversation with our loved ones long before we have to honor it is so important. Most people seem to be very uncomfortable with this conversation – and the subsequent similar conversations that will and should follow it.

But let me ask you a question that shows why we need to get comfortable with it.

What if something with a life-ending outcome looming happened to you today and you’d never discussed and formalized your dying wishes with your loved ones and they were suddenly thrust into the position of having to decide whether to postpone the inevitable or let you go with no intervention in God’s timing?

Would you want your loved ones to be in that position? Would you want to be in that position? Think about it. And have the conversation. As soon as possible. 

Precious Story About the Circle of Life of Caregiving for Our Loved Ones With Dementias and Alzheimer’s Disease

Momma and Me had a wonderful story today about bedtime kisses. And how the circle of life has the daughter kissing her mama goodnight, then comforting her with further kisses throughout the night to allay her fears, to calm her back to sleep, awakening at all hours to make sure her mama feels safe enough to go back to sleep. She draws the parallel between this and her own childhood when her mama did the same for her.

It’s a poignant post as I imagine the many nights Mama got up with us, especially as babies and small children, to make sure we were calm, unfearful, and safe enough to go back to sleep. And I did the same for her as her days came to an end.

I’ve always been a light and up-and-down sleeper. I suspect Mama spent more time trying to get me back to sleep in my early years (as I grew older, I just stayed in bed awake, only getting up if I heard her up with one of her migraines pacing the halls, and then – now – as an adult, just getting up and often doing the same pacing she did) than I spent in her later years doing the same with her.

I wasn’t afraid of anything. I simply have never had a good sleep rhythm or pattern and that continues to this day. But, as I became Mama’s sleep comfort over the years, I realize that was a blessing that I was able to give her when she needed it.

As Mama did with me when I was small, I was able to return a lot of kisses to Mama as our roles reversed. I never put her to bed or back to bed without a kiss, a hug, and an “I love you.” When the nights were filled with the symptoms of Lewy Body Disease, I’d lie beside her and with one arm around her, hold her hand with my other free hand. It never failed to help, even if it didn’t completely stop it.

It’s the little things that make the difference. With babies and small children. With loved ones suffering from dementia and Alzheimer’s Disease. They don’t cost anything but time and patience. This taught me about love in action. 

I’m thankful I had Mama and Daddy to model this for me as a child so it came naturally to me as an adult.

Remember the gifts your parents gave you, the sacrifices they made for you, the love they surrounded you with as they grow old and need the very same things from you. Life is a circle and those of us who are younger – well, everything in the universe in counting on us to complete it.

The Power of Music: Soothing, Calming and Connecting with Our Loved Ones with Alzheimer’s Disease and Dementias

“And so it was, whenever the spirit from God was upon Saul, that David would take a harp and play it with his hand. Then Saul would become refreshed and well, and the distressing spirit would depart from him.”
I Samuel 16:23 (NKJV)

Music universally touches the soul. There is abundant evidence of how effectively music calms, soothes, and relieves the frustration and anxiety of those loved ones among us who, because of neurology and/or biology, are unable to always fully verbalize their needs and responses to our desire to meet them.

We grew up in home filled with music. Although neither of my parents was a musician – and they had only a 33% success rate of their children becoming musicians – they loved music. They had an eclectic and surprising, at times, range of tastes and genres. So from our earliest memories, music became the a mainstay of our lives.

My mom was the musical adventurer in our family, embracing and exposing us kids to a rich landscape that remains for us even though Mom and Dad are gone. I think I was the inheritor of Mom’s legacy, though, because my musical journey has always looked and looks much like hers in its breadth and diversity.

I will never forget a little road trip that Mom and I took just after U2’s The Joshua Tree was released. I loved U2’s 1983 album, War, but had been disappointed with everything before and after that until the release of The Joshua Tree. I was playing it and Mom asked me to turn it up.

I turned it up loudly enough so that she could hear the music and the words – and handed her the liner notes so she could read the lyrics – and as she listened and read, she smiled and said “I like this. It reminds me of the music I heard growing up.”

As I thought about it, I realized she was right about the striking similarity in tone and content between The Joshua Tree and the Depression-era music she’d grown up with that juxtaposed the discouragement with the harsh reality of life then with the hope and optimism of faith and belief in God and I understood that we both appreciated the album for the same reasons in different time periods.

One of her favorite tracks was “In God’s Country:”

As Mom’s vascular dementia, Lewy Body dementia and Alzheimer’s Disease progressed, I turned back to music for her to calm her, to comfort her, and to bring back happier times and memories of her life. And, as Mom took her last journey out of this life, I also turned to the same music for the same reasons.

(Ironically, so far, it is really hard for me to listen to all of Mom’s music yet without a lot of sorrow except in small bits and pieces here and there where I don’t have the opportunity to linger over it and have the flood of memories of our life through the years come over me like a tsunami wave.)

With technology, building a customized musical library for our loved ones suffering from Alzheimer’s Disease and dementias have never been easier. I will list a few low-cost and free options for building these databases for playback at any time.

spotify music application for PC and tabletsSpotify has one of the largest musical databases around and is an excellent choice. An unlimited subscription is only $4.99 a month and provides unlimited play time with no commercials (the free version gives you 10 hours of playback a month with a lot of commercials). The “shuffle” feature works well with mixing the music up and making each playback unique.

While Mom was alive, I had the unlimited subscription. I created several playlists for her that we listened to a quite a bit during the last year of her life. A lot of times I’d play them softly during her naps, which became more frequent and lengthy during the year.

But when she was awake, we’d talk about the music and occasionally, we’d sing along if we both knew the words or I would sing to her and she’d smile watching and listening to me.

If you’d rather build your own musical database, the easiest way is to convert YouTube videos to MP3 files and download them to your computer (I’d suggest storing them in your Music folder in the respective folders you’ll need to create for different types of music or artists to keep them organized and easily accessible), where they can be played back with Windows Media Player.

The steps to do this are fairly simple:

  1. Copy the YouTube video link you want to convert to an MP3 file
  2. Go to listentoyoutube.com and paste the link
    listentoyoutube-graphic
  3. Follow the directions for downloading the converted file
  4. Double-click on the file to play it in Windows Media Player

Once you’ve got Windows Media Player open, you can create playlists there and drag the MP3 files from your Music folders into each playlist. Then the next time you want to listen to a playlist, simply open Windows Media Player and click on the playlist. Windows Media Player also has a shuffle feature, which I would suggest using just to keep the order fresh and different each time a playlist is played.

So, if we haven’t already tried music as a comforting and soothing part of caring for our loved ones with Alzheimer’s Disease and dementias, then we need to implement it today. The benefits are not just to those we love because this is a wonderful way to connect and spend time together and intersperse some happy memories for us to carry with us when our loved ones are gone.

Steps On The Path – From “Momma and Me Our Journey Through Lewy Body Dementia” blog

As I read this post tonight on Momma and Me Our Journey through Lewy Body Dementia, tears filled my eyes as I remembered a similar moment with my mom a week before she died.

Mom didn’t know who I was most of that last week, but she knew I was someone she could trust. At least after she cried out to God as I put her into bed the Monday of the week before she died and said the words that cut me to the very inner recesses of my heart: “Oh, God, she’s trying to kill me!”

Mom’s mobility was so limited after the major heart attack she suffered on August 2, 2012, that it took all my strength and effort for everything that required movement for her and with her. I was as gentle as I could be with her, and, in some ways, sacrificed my own body, to ensure that Mom was okay, safe, and not taxed any more physically than was necessary. Mom was worth it.

Azheimer's Disease Dementia Steps and Stairs Toward The EndEarly in the morning the Tuesday a week before Mom died, she was in the hospital bed I’d had delivered on Monday and I was in the recliner where she’d slept since we’d come home from visiting my twin sister in May (sleeping in a reclining position eased what I now realized were chest pains from her congestive heart failure).

I was in my usual half-awake/half-asleep nightly ritual when a severe leg cramp forced me out of the chair and onto my feet. As I stood up, I saw that Mom was awake, but the leg cramp was so bad, I knew I had to deal with it first before I could deal with her.

I have an old ankle injury (from a serious car accident when I was in college in which my foot got wrapped around the brake) in the leg that was cramping – which is also the leg that I’ve had three reconstructive, repair, and replacement surgeries on my knee – so I’ve learned over the years that I have to be careful not to pop the ankle when I’m trying to walk out leg cramps in that leg.

Walking wasn’t helping, so I sat in a chair and tried to massage the cramp out. It took about 15 minutes, but I was finally able to stop the cramping enough to go to Mom.

I walked over to Mom and took her into my arms and leaned down to talk into her good ear and ask if she was okay. She took me in her arms and held me close to her, returning my embrace fully, and said “I know I’m not going to get out of here, but you can, so as soon as you get well, promise me you’ll leave.”

I promised Mom that I would and we held each other, for me, as mother and daughter, tightly for several minutes. I kissed Mom and told her I loved her always and unconditionally, and she pulled me closer and squeezed me tighter to her chest and then fell asleep.

Other than Mom’s rally the following Saturday, this is one of the most precious memories I have of my last days with Mom. Even if she didn’t know who I was in a conscious way, somewhere deep inside she knew. She remembered. She loved me. She was looking out for me.

In Alzheimer’s Disease and dementia, there’s not a lot left for us to take away as the diseases destroy our connections to our loved ones. I’m thankful for each one that I have, no matter how thin, how temporary, how distant. Because I know behind each of those is my mom and our bond.

It promises me that some things can’t be broken. Ever. For that I’m grateful and thankful.