Only The Lonely

I said that I had more to write about those three weeks with my mom and I deliver.

It was a trip that was overwhelming with all the things to process. The actual things, the emotional things, the outrageous things, me wrestling with my conflicting things, and then the biggest thing.

The loneliness thing.

My mother had her mother for several years as her bickering buddy, her television watching companion, her people-judging partner, her fellow gossip gal, and dining companion.

They laughed, they bitched, they screamed at each other; but through it all, they weren’t alone.

Until Mimi died.

The one thing in which I differ greatly from my mother is that I am most content to be alone. I believe she has always been a social creature but too afraid to put herself out there. Mimi carried her socially. Was it social anxiety?

Maybe.

Mom had few friends of her own. She liked groups in her youth. A gang of friends with whom to spend time. She had a couple close friends in Germany but after moving to the States they held a fairly infrequent correspondence until that eventually faded away.

In the end, she had her mother, Mimi. They were friends in a loving, and yet, volatile way. Like a Debbie Reynolds-Carrie Fisher way, I suppose. Or maybe mix between a Joan and Christina Crawford way.

Their downs were dramatic for certain.

After Mimi was laid to rest, one would think that mom would have had an Earnshaw epiphany and realized now she had the freedom to really live.

I think she had some of it, but it was my sister who now carried her. Mom was not ever going to be brave enough to independently seek happiness for herself, make new friends, or build a career.

I think after the disease took hold and really presented itself, my sister could no longer carry her socially and the role of patient to caregiver began.

This meant hiring in care workers while my sister worked and it meant hours Mom went without human interaction. She could not drive anymore due to macular degeneration stealing her vision and the LBD made it risky for her to venture out to visit with nearby neighbors. (Although, most nearby she had some bone to pick with at some point.)

You and I both know we can go hours on end without any interaction except for television, books, music or the internet and relish in it.

However, imagine yourself blind and all that self entertainment is dependent upon your sight. Operating remote controls, not knowing what’s going on in a program (if you do manage to fumble your way to a show to watch) due to simply music and no dialogue. Much is lost.

Inevitably, loneliness sets in.

And boredom.

This is now an Eleanor Rigby stanza.

While I was there she had the 7/24 company she hadn’t had in years. We talked and watched shows, listened to audio books and dined together. The one thing I wished we could have done was taken walks together. She simply wasn’t steady enough on her feet to do that, however.

Having to return was the single most conflicting action of my life. I’m needed in my own family but I was beneficial there too. Every time I took a trip to the store I saw opportunities to just uproot and stay there. But it would mean starting over. There are no real job prospects in that area and it would mean forcing the whole family to forsake their paths for my sense of responsibility.

There seemed to be no right answer on this. Deep down, I believe I should have stayed longer. Everything inside me screamed I was failing her, I was failing my sister and I was failing my sense of responsibility toward family.

But I have an immediate family too–you and your father.

I knew when I returned, I wasn’t totally myself because I focused on her loneliness. Leaving her back to the hours on end without interacting with others. She spent some time in a nursing home facility after I left, so she had more contact with others but she fell while there a few times.  The trade off did not seem to balance in my opinion.

I made it a point to call her after I got back and it was a hit or miss when she would answer the phone. When she did, it was clear that our conversations would be superficial and tiring for her as she struggled to complete thoughts. I don’t want to frustrate her at all. So making the calls seems to be reopening a wound over and over for her.

This disease is complicated and difficult to know exactly how to help from this distance to combat the loneliness. I want help but I want her to rest as well.

My advice to you is to treat those who may be suffering from loneliness the way you would wish to be treated if you felt alone. Just be sure that in your efforts you are doing good in the process and not creating more pain. Take care with your intentions and act accordingly.

 

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The Injustice of Aging

You’re young. So very young. This post will seem like a lot of whinging about what a drag it is getting old.  You’ve witnessed several elderly patrons at your place of work fall; and as the compassionate soul you are, you have helped and identified the problems to management to assure the incident is not likely to happen again.  It is that kind of consideration that gives me faith in humanity.

I don’t believe you were aware of all of the things I witnessed while visiting my mom. As well as the things I am ashamed to falling prey as a caregiver having little to no experience with dementia other than my teenage self re-living the same frustrations I did when my great-grandmother came to live with us while she suffered from Alzheimer’s.

Society is bent on valuing youth; because… “The children are our future”. (Also the right end to a pageant question as proven by iCarly.)

However, these bright eyed gifts are molded by their elders. And they deserve some respect and care as they make their journey into the sunset.  This is merely to forewarn you of what lies ahead as you age.

It’s not just the physical or mental deterioration which you must endure on this journey. And might I just say, some of it was a complete surprise.

For example:

As you age, your digestion changes once again. To the point where you are slower to digest and certain complex foodstuffs you are not able to break down as you could in your youth. (becoming lactose intolerant was a shocker to me)

Your ability to see at night deteriorates as well. I recall my grandmother on my father’s side having me take the wheel after sunset in Laredo ( a town with which I was wholly unfamiliar)  because she could no longer see to drive. She drove a huge boat of a vehicle too.

Your kidneys are not as efficient as they once were. So they slow in the processing of wastes and you swell a lot if you tax them. (Think cankles and puffy feet) It’s actually painful.

Skin issues become a thing. Fungal infections, boils, yeast, suspicious growths, moles, skin tags, wrinkles, wens. Jesus I thought the dermatology visits were over when acne was resolved.

And this doesn’t affect you since you’re a guy… but the many plagues of menopause are shocking. Burning mouth syndrome, hot and cold flashes, mood swings far worse than PMS mood swings, the hemorrhagic instability of the in utero sloughing process. The sudden transformation into a carnival sideshow freak crossed with Frieda Kahlo. My beard if left to grow would be better than yours. I would stake a bet on it.

Your mind is not as sharp to grasp and hold onto items in short term memory. As you age it progresses while mid sentence. You cannot finish a fucking sentence while talking! Imagine the shame and embarrassment of that.  Some of it is funny like the “Where’s my [thing I cannot find but is on me the whole time]?” or the “What did I come in this room for anyway?” scenarios. Others are scary like losing a chunk of time and space while driving a route you’ve driven over and over. Or scary like attempting to place [some object] into [place where it does not belong].  And yet other are scary like not remembering if you had shampooed or rinsed your hair while you are in the shower. Or super scary like standing in that shower and not knowing what to do at all. You are simply frozen in indecision.

Aside from the obvious aging issues of diseases tied with old age, lifestyle based illness, poor reactions to viruses you once could recover with ease in your youth there is more.

There is harassment, discrimination and abuse.

Refer to this handy chart: 2018-08-17_14-56-49

I got to see some of this first hand while staying with my mother.

For the Financial Abuse:

  • The phone calls trying to scam her of money or scam her medicare coverage for services she did not need.
  • Care workers stealing from her instead of doing the work they were hired to do.
  • Neighbors charging her exorbitant amounts for services they had no need to do.
  • Pharmacy delivery people taking blank checks or forcing my mother to sign checks she clearly could not sign for the deliveries. (who knows how much they were taking out of her account)

For the Psychological:

  • Careworkers guilting my mother into allowing for them to not doing their job because she was not as bad off as they were.
  • My own response to frustrations of the symptoms of her disease as if I felt she was purposefully being uncooperative when clearly I did not understand how her functioning degrades as she grows more tired during the day.
  • Neighbors verbally harassing my mother over things she cannot control.

For the neglect:

  • Careworkers not showing up, showing up late, sleeping on shift, not doing the tasks for which they were assigned.
  • My mother not getting the right meds at the right time of day due to the mismanagement of her prescriptions in the pillbox
  • The horrible food choices delivered to her door once per day only 4 days a week. Never in a timely manner.
  • Not discarding spoiled or discarded food which might lead her to consume such by accident.

Luckily for my mother, I never once saw her physically abused. But that is not to say it didn’t happen in the nursing home. I have no proof of it.

There aren’t many protections or safeguards from elder abuse other than vigilant family members and case workers. As you grow older it becomes increasingly important to have a network of younger family and professionals who have your back. Don’t think you can go this alone.

And if you are obliged to become a caregiver to either me or your father, know these things:

  • It is exhausting.
  • It requires selfless giving, unlimited patience, compassion and non-judgement.
  • You become the parent of your parents.
  • There is support for caregivers when it gets to be too much.
  • It is a-okay to say you cannot do it and arrange for in home care or nursing home care.
  • If you choose to get outside help, you must never trust they have your parents’ best interests in their purview. Assume they are all out to take advantage of you or their situation to their benefit. Stay vigilant and always check up on their service.

On Losing One’s Mind

The three weeks spent away to assist my sister in preparation for the eventuality of placing our mother in palliative care was an eye and heart opener. Before travelling the 16 hours I had always thought I was a compassionate and kind person with extraordinary capacity for patience and understanding.

I was wholly wrong.

I did the research on several sites such as AARP, NIH, Alzheimers Association to get a grasp on this disease. None of which prepared me for what I was about to experience first hand.

For a bit of background please read about Lewy Body Dementia at – https://www.nia.nih.gov/health/what-lewy-body-dementia

This site has a wealth of information on what it is, how it is diagnosed, the symptoms and treatments.

My mother was diagnosed in April after my sister called in almost full breakdown due to the stress of caring for her as she lived alone and trying to care for her own family at the same time. I called a college friend, who is a neurologist to discuss the symptoms with him – the shaking, hallucinations, inability to maintain balance. He suggested strongly she see a neurologist in her area as soon as possible. He thought it might be Parkinson’s and not the good kind.

My sister arranged the appointment, and after the consult and imaging it was clear to that doctor that, mom had Dementia with Lewy Bodies (DLB). Her frontal lobe was separated from her skull at a much more advanced rate than anyone her age.

This disease as you have read has no cure, and will require nursing home care at some point and ultimately hospice care for her final days.

My trip was to go out there to her home and begin organizing the house to make it more simple to get around, and remove the unnecessary clutter, go through papers and collections and sort out all her clothes, shoes and such in preparation for palliative care.

When I got there, I started in on a room by room assessment with the knowledge that I would be focused on just the sorting and clearing. In her state of residence, they have a program which focuses on keeping the elderly in their homes for as long as possible.  It is called the LIFE program whereby care workers come to the home frequently to assure she is eating, bathed and has taken her medication and do light housework. These care workers came to mom’s home twice a day for such duties.

In my first few days I found out that the care workers were not as reliable as I was led to believe. Nor were they trustworthy, as my sister told me she caught one worker attempting to steal from her purse red-handed. She told me how that worker had stolen change and items prior to the purse incident and that that worker was fired. My focus now was to keep an eye on the remaining workers as I worked to assure they were on task and not rifling through my mother’s belongings to pilfer what they could.

As they arrived at 9 a.m. I thought I could sleep in and then take on each day while my mother was attended to. That also was not the case, as my mother would get up anywhere between 6:30 and 7 a.m. struggling to make her breakfast and get around the house. I had to get up to assure she did not fall as she had fallen five times within the prior week that I arrived.

Now I was having to assume care taking as well as the sorting. I had to parcel the time now to assuring she had her breakfast and was settled by the time the care workers arrived. When the care workers arrived they would take over and get my mom showered and dressed, do any laundry and picking up. That was about it. The rest of the time they just sat with her and watched television or dicked on their phones.

I do need to make a point to say that not all the care workers were this inactive. Two were outstanding. The others seemed to be deer in headlights and had no idea what to do when they got there. I had to instruct them.

Eventually, I was doing the meal preps for all three meals, cleanup and laundry. At night I had to assure she was readied for bed as well. This program was not all that it was cracked up to be. I was not making too much progress until my sister got off work to come by and assist.

To give you some idea of the task of clearing, this was not simply packing up a few things. This was evaluating everything my mother had amassed over her lifetime as well as items of her mother and father (as she kept all of their items as well). Photos were everywhere in the house, loose, album bound, in envelopes, bins, random stacks of frames, laced in bibles with other certificates of death, obituaries and other very important paperwork.

My approach was to retain all important paperwork, pictures and collectibles and give away any non essentials, such as small appliances in storage, books, clothes, tchotchke of no essential value. Believe me, the trips made to Goodwill were 2-5 times per day.

I learned that antique shops were no longer taking anything I had to offer as they said young people these days have no interest in these antiques. The local antique mall owner said I’d be better off just sending it all over to Goodwill or the Salvation Army.

We cleared out so many things that first week and part of next I thought I was going to be able to leave earlier than expected. However, my sister soon put that to rest when she opened the outdoor shed which was filled with refuse and storage cabinets filled with more “things”. I never swore so much in a single moment than I did when she opened those doors.

That is why I had the big purge of 2015 in our own home. We had an overrun of “things” that I did not want to burden you with. And although that was done, your dad amassed more “things” to fill the cleared spaces when his mother died.  We will need to do another purge again because you should not have to deal with this in the event we require 24 hour care and must be placed in palliative care.

I digitized all the photos and paperwork I found at mom’s and uploaded them to the cloud. My sister has all the originals should you ever want to see them.

Statistically we sent over 150 bags of trash to the landfill and gave away about the same to Goodwill of all the things which were not destroyed by time. We wrapped up 4 sets of china and a fifth remains to be stored as my sister sees fit. I found so many things of my childhood that I took back a parcel of some but not all.

Now that the stuff portion is out of the way, let’s talk about this disease. It is not known to be genetic BUT…

Rarely, the condition can affect more than one family member. Some of these cases appear to be due to single gene changes (mutations) that follow an autosomal dominant pattern of inheritance. Other familial cases do not follow a specific pattern of inheritance and likely have a multifactorial cause (associated with the effects of multiple genes in combination with lifestyle and environmental factors).[6][5]

My great grandmother suffered from something which is exactly like DLB. I was in high school when she came to live with us. She ended up losing her continence as well as her ability to feed herself and my grandparents went nearly destitute to pay for palliative care for her. She lived for 15 years.

There are genetic tests for the likelihood if you carry the markers for this disease. But you have to go to a health care professional to get these tests done.

https://www.ncbi.nlm.nih.gov/gtr/conditions/C0752347/

I have contacted GARD regarding testing and hopefully you and I can be tested to see if there is a predisposition to this in our own genetics.

https://rarediseases.info.nih.gov/about-gard/contact-gard

Another resource for factors that increase the predisposition for this disease

https://www.verywellhealth.com/lewy-body-dementia-risks-98761

I want you to know that if I fall prey to this I do not want to carry on with it. There are states with a death with dignity law in place and I will want to be moved there to have the choice of how I handle this. Oregon is nice.

Now, be warned I will be writing more on this subject as well as on my mother as there are some extra life wisdoms which came out of this visit that you may find useful on your life’s journey.

On Strength and Weakness

I stumbled across a click bait slideshow of the 20 bitchiest quotes from Bette Davis a few days back and had to smile over the featured quote in this post. (source: flavorwire.com/512679/20-of-the-bitchiestbettedavisquotes)

I could think of several people who fit her description with whom I came into contact in my life. As such, her quote seems to me  brutally honest and I had wished someone would have shared this pearl of wisdom with me so I could have been more prepared to identify it before my energies were wasted in those relationships.

I find that what impressed me most is learning that Ms. Davis, in real life outside of acting, was just as brassy and open as many of the characters she portrayed. I always admired her craft. She chose such complex and outstanding roles of women, often intimidating, steely, cold and, yes, bitchy. But strong. Even when she had the challenge with the tragic Charlotte Vale, in “Now Voyager” she knocked the viewers’ socks off with her stunning performance, letting vulnerability and weakness take the forefront. That film was a game changer for me in my fandom of her work.

The thing is, I was surrounded by very strong and considerably bitchy women in my life. Never once did I see them exhibit any weakness which I thought was daunting. The expectation was that to be a survivor, a success, one never showed weakness. No matter how heavy the burden, you shoulder it. No pity parties, no crying. You do what needs to be done.

I survived because I was tougher than anybody else”– Bette Davis

I thought it was the norm that when the going got tough, you pull up your big girl/boy pants, take a breath and keep going. Mostly this is true because it is so easy to get lost in the drama of the situation and feel sorry for yourself and simply give up. Lately this week has given me pause in terms of not letting some of that weakness show. I cracked a little and finally let out the stress, the anxiety and the fear. I cried on the way to the grocery store. When I pulled in to park, I realized my eyes were more than likely swollen, puffy and my face very flushed. So for that moment of release, I sat there spending the time to pack it all back in, taking that deep breath and carry on.

I learned right there on the slow walk into the store, that moments of weakness are needed. I had to let it out as keeping it in was tearing me down, mentally and physically. Sometimes one can find more strength from showing or recognizing weakness and tending to it for just that moment. Asking for a break, a little help, or just disconnecting to let it out some.

One cannot be strong all the time and it is okay to take that moment to let the stress of the burden out; briefly, but out.  Denying the toll life’s challenges take on one’s self will manifest in different, more self-destructive ways. Recognize it and tend to it.