Part two of the long story | Caringforelders

Ok Chapter Two

Trigger Warnings: contains story of loss, death, and dementia.

This one does not exactly have the happy ending of the last chapter. As always, summary first.

My father has passed and my mother, while living with my sister, is falling more and more into her own world.

Long Story.

As you may imagine, it has been a rough couple of years. The reason this website has not been updated is frankly because I could not bring myself to do so. When I last wrote of this process, my parents were doing as well as could be expected in their new senior living situation.

Then came COVID.

Then came my father’s final series of stokes.

Then the world tilted on the axis and took a bit to get back to a new definition of “normal”.

COVID – one of the strange side effects of COVID that happened in senior living homes, or other institutions, was not something I ever expected. Every time I would visit my parents during COVID (Jumping through a LOT of hoops to do so and with no complaints because it protected vulnerable lives.) there would be a new picture or two, or three, on the “In Memoria” table set up in the lobby. I believe (strongly) that it was because suddenly they were cut off from almost everything. Essentially confined to their apartments (or rooms). No socialization allowed at all and fewer visits from friends and family. I believe they passed, at least in part, due to loneliness and perhaps even boredom. That was the situation as it stood.

(Note: I am not a professional health worker and have no access to statistical data, this is simply what I observed.)

Then there was a minor issue. Bedbugs. Here is something that you will probably not hear during your tour of the facility. ALL FACILITIES SUFFER OUTBREAKS OF BEDBUGS. Rather than ask, “Have you ever had an outbreak?”, try instead: “When was the last bedbug outbreak and how was it handled?”

But to get back to the point. My parents suffered, along with half the facility, an outbreak of bedbugs. The solution of which was to raise the heat in each unit to the point where the BB died and then do a pest removal on the dead bugs. This is standard treatment and it worked great…everywhere except my parents apartment. There was a defect in the smoke detector, and the heat set it off, which of course, set off the sprinkler system, which drenched everything in the apartment and ruined about 90% of their stuff. SO we had yet another move to yet another apartment…with the added fun of attempting to replace all their stuff. (And getting furniture places to deliver and set up ASAP – that was fun) And of course we had to call in a junker to remove all the ruined items. (I still think the facility could have helped out a bit more with the removal process, but that is the ONLY place they have let me down…everywhere else they went over and above what my parents needed and frankly, with COVID they did not have the staffing to help with the removal, so they get a pass.)

A few weeks later, Parents are in the new apartment, with the new furniture and cleaned clothing (we could save some!!!) and what ever else we could save. I was making weekly visits to take Dad to doctor appointments (and sometimes Mom), and also taking one day a week to work on eliminating the storage unit they had. Hey, now they have room for some more stuff!!! Then I got a phone call. Dad had another stroke. He was unable to respond when the attendants at the home came to assist so he was admitted to the hospital. I picked up mom and headed out. Again, keep in mind the fact of COVID. We were allowed only one at a time to visit with him. As they were keeping him overnight, mom and I went back to the home, and they let me stay with her. (She could not stay alone.)

Going back to the hospital the next day was hard, and it was the beginning of the hardness. As I have said before on this site, my parents had designated me as one of the POAs…and I was the only one able to make any choices. After getting to the hospital, the doctors had some very bad news for us. Dad was essentially not there anymore. He had continued to suffer strokes and, well, was only being kept “present” by machines. I have never been more grateful to my father for anything else in my life then the following: Not only did I have in writing what his wishes were in this exact situation, but he and I had talked about it several times over the years. As soon as we could, we gathered all the family and said our goodbyes…while we could still pretend he was there to hear them. We even called the out of state sister and she was able to make her farewells.

Then, and with complete agreement, we honored his wishes.

We were not allowed to stay with him while his physical body passed, due, of course, to COVID restrictions…but he wasn’t there. The spark, or gleam, or whatever makes us who are? It was gone, and even my mother, his wife of almost 60 years, a woman with increasing cognitive issues, knew it.

My brother and his wife took mom home to their place, she needed them and they needed her. When I got the call that he had officially passed, I contacted everyone and we began to get ready for the next phase.

Again, Dad had been very detailed in his final wishes, so with those…and the addition of my mothers requests, I began to plan a COVID funeral. (More details on the planning of this in a brand new fun section called Final Arrangements.) It was hard. Dad had 7 brothers and sisters, all of whom had spouses and children. Mom had extended family also, and there were a multitude of people who wished to pay final respects. (See previous mention of how mom and dad’s wealth was measured in people rather than money.) But the funeral parlor had to follow the restrictions and limit attendance to 15 people. But they had a solution. Live streaming. So I contacted several of my fathers former co-workers – fellow pastors, teachers, and counselors – and created a program. To his and their credit, and my everlasting gratitude, not a single person turned me down. We had a lovely ceremony with his favorite hymns, accolades given by his piers, and comments and stories from his immediate family. I did not get up and speak, I kind of figured I had done enough at this point and he was good with it. I know he would understand. And it gave me a moment to just be and to grieve.

The next day we drove to the veterans cemetery for internment and that was immediate family only.

After that? Well, during the time between his passing and the service, we had successfully moved mom out of the senior living center and yep, you guessed it, moved some of her “stuff” into the storage facility. (would I never be free of this place???) The rest we hired junkers and just threw away. The goal was to move her up to OR with my out of state sister and sister’s hubby – they had a room ready for her. And that was exactly what we happened. We loaded up the pickup and mom, sis, and sis-hubby headed out to her new living situation.

All of this happened a few years after my initial webpage creation…which you have probably figured out by now. During the intervening years, I and my brother have finally cleared out the storage space and closed it, my hubby and I moved to another state (work/relatives/etc), and my mother has stayed with my sister.

I have nothing but respect for my sister. I could NOT do what she is doing. Mom has continued to lose memory and she knows it. It frustrates both of them. Sis has learned the habit of repeating things multiple times, without losing her temper and making mom feel stupid. (This is a serious learned skill!) But mom is…not doing well. Physically she is ok, she sits in “her” chair everyday and watches the tv unless her caretaker is there. Her caretaker is a godsend. The caretaker helps her with minor memory exercise and what I would call “kiddy crafts”. But my mom is, well, letting go of knowledge.

Many years ago, I asked my mom about a traumatic even in my childhood. Her response was “I don’t remember that. I choose not to remember the bad things.” I firmly believe (with NO medical knowledge or proof of any sort) that this lifelong habit of deliberately forgetting is, if not responsible for, at the very least contributing to her memory issues today. No one in her family has ever suffered from dementia or Alzheimer’s or anything other than the occasional absent mindedness that happens to everyone. Whatever the truth or the cause, mom is getting worse. I am now in the situation of trying to persuade my sister to set expectations. In a year or two I think mom is going to have to go into a facility. For her safety and peace of mind as well as for the relief that will come to my sister. I also need to remind my sister about the “Weekly passes” most facilities have where you can have a loved one taken care of for a week or two while you take a much needed vacation. That might be a great way to see how mom reacts.

And that brings us up to date. Dad has “gone home” and yeah, I firmly believe he has. Mom is with Sis and is being taken care of quite well. Unfortunately the next chapter that goes up here is probably going to be when mom “goes home” to be with dad again.

Takeaways from all of this:

Talk over final arrangements with your parents/loved ones/spouses. It is a scary time for all and having a roadmap, a “what do I do now”. Is more precious than gold.
Speaking of gold, make sure that the disposition of all property is clearly set out. If at all possible, make sure that everyone who might be affected has a copy of the will. In my parents case…well, here is a story. One year one of my siblings gave them a coin sorter and said “Now you can organize our inheritance.” That was not far from an accurate statement, but yes, my parents made sure we all had copies of their will and wishes.
Make sure there is a POA on file. AND that the POA is emotionally, mentally, and physically able to act as POA. This is VITAL. Also please remember and believe this to be true. There is no shame in not being able to fulfil that role. If you cannot do it, that is ok. It is hard and hard and hard again to make some of the needed choices. Just make sure that there is a string of POAs. Medical and financial companies and personnel cannot do anything without one. Legally. They are not allowed to.
If you need to, consult a lawyer for any or all of the above. Please know your family. Know if there is going to be an issue after death. Actually….I am going to make that an imperative. Consult a lawyer for all of the above. If you do not have a friend who is a lawyer and you cannot afford one, contact a social worker or look into the benefits available for the elderly in your area. Note: In some states, if there is no will, the money/property/et.al will pass to the spouse. If this is the case, make sure the spouse is protected in any way you can. Social workers are great.
Take care of yourself. You cannot take care of them unless you take care of yourself first.
Be prepared to let them go. I would love to have my father still around to talk to, to let him know about the new things in my life. Heck, I would like to be able to talk to my mom about the new things in my life. But dad was gone before he was gone…and mom is going. So we need to say our goodbyes to her also. To let her go in our hearts and still spend what time we have with her…even though the last time I visited she spent most of the day wondering who I was. It was heartbreaking. We have the same first name and it is unusual, so when she asked who I was, and I told her, she was very surprised since she didn’t know anyone with that same name…she asked me who gave it to me. When I said she did, that she was my mother and I was her daughter, her next questions was, “When did you leave me that I don’t remember you?” heartbreaking

Remember:

Getting older sucks. In this day and age when physical health keeps people “healthy” beyond what their mind can do….sucks. (Please note that I am in no way saying I wish old people with memory issues just died, I simply wish that our minds could keep up with our bodies and sidestep the memory issues altogether.) Life can sometimes suck. So find your moments. See the cloud that looks like a walrus dancing with a butterfly…and smile. Enjoy French fries. (yeah, I know but I LOVE them!) and take a breath. Watch a sad movie and cry it out. (Try the first five min of UP)

Here are some quotes that have spoken to me recently:

Love yourself first, and everything in else falls in line. You really have to love yourself to get anything done in this world. - Lucille Ball (A lady who got a lot done in this world)

Be who you are and say how you feel, because those who mind don’t matter, and those who matter don’t mind. – Dr. Seuss

Don’t sacrifice yourself too much, because if you sacrifice too much, there’s nothing else you can give – Karl Lagerfeld

Almost everything will work again if you unplug it for a few minutes, including you. – Anne Lamont

We cannot direct the wind, but we can adjust the sails. – Dolly Parton