Preserving Memories

I wrote a post awhile ago about a session I had with my friend Sharon here.  Something else really powerful came up that day I have been thinking about recently. She was leading me in a guided meditation that involved connecting to certain parts of my body.  I had a vision while checking in with the back of my womb – it turned into the back of my closet, where there is a filing cabinet, and then into the back of the drawers in the cabinet.  I immediately knew this had to do with the decluttering  and purging I have been doing, but also the preservation of memories. When I went home, I started going through the drawers, deciding what to get rid of and what to take to California, as I had a plan to do a bunch of scanning.

This concept has really come full circle for me now, being here with my dad and seeing how many memories he has lost.   Many of them come and go.  Some days he insists we never lived in Van Nuys or Chatsworth; other days he will start talking about the homes we had in those cities.  Some things seem constant and others seem totally gone.  He always remembers who I am and who my mom was for example, but he has no memory of most of our extended family, especially on my mom’s side.  He also has almost no memories of things that are significant to me from my childhood, like my first car or many of the places we traveled.

What is fascinating to me, in a very sad way, is how he seems to need to find his own pathway to some memories.  There are certain people I will ask if he remembers, and he will say no, but if I can get him to think about something connected to them, he will sometimes get it.  I think of it as some synapses being gone and others still being there – he just needs to find the ones that still connect, so it can take a bit longer.  I have no clue if that idea holds any kind of scientific accuracy, but it works for me.

So what about my memories?  Since being here, I am going through all the albums and scouring nooks and crannies for every photo I can find.  I am a scanning maniac!  There are so many older pictures of people nobody seems to know, which I feel really sad about, and my dad’s vision isn’t strong enough to help.  I am not sure if it has to do with cognition or vision, or a combination of both, but he usually says he can’t see photos or tell who they are of, even in large ones.

I hope that if I get to the point I am having trouble remembering people, all these labeled photos will help, and I hope they will be of value to my children and maybe even grandchildren someday. I am also enjoying sharing them friends and relatives online.  It is sure a different world in relation to photos than when I was growing up!

But most important to me, I find myself thinking about which memories I want to hold on to.  They don’t all have photos of course.  Some are about feelings, some about physical sensations, some are already just a glimmer.  Things that come to mind are the smell of my dog's blankets, the sensation of cracking open walnuts for Christmas candy, the feeling of jumping off the tar pits into the sand at Carpinteria and so much more.  What I have seen with my dad are certain stories he tells over and over, and those are the ones that have stuck.  Now I am wanting to start writing recollections as well as just scanning photos, especially those that don’t have any photos related to them.

What another project?  Who me?  Get in line.  

Health Update

Phew, every time I think I am going to write a health update for my dad, it seems like something new comes up, and I want to keep notes on everything, if only for myself.

So...  in April he had an MRI because he was complaining about bad back pain and would sometimes have a hard time standing up after bending over.  It turned out he has hydronephrosis, which means one of his kidneys is swollen.  Not really sure how this was overlooked while he was under the care of a nephrologist, but we can only go from here.  We went to see a urologist, and he called for an ultrasound and CT.  It turns out there is some sort of mass, which the doctor thinks looks like lymph, pressing on his ureter, which is what is causing the kindey backup.  For his part, he said he could put in a stent to help drain the kidney.  That is a procedure that would be done under GA, and would have to be redone every 2-3 months.  As far as the mass, we needed to see an Oncologist.

One more doctor added to the mix,  :/  The Oncologist ordered a biopsy, and we found out the mass is a follicular lymphoma.  Apparently not dangerous in and of itself but causing functional problems in my dad's case. He suggested a course of rituxan, which is sortof of like a mild, and usually side effect free, form of chemo.

I put the options to my dad, and he just keeps repeating that he wants me to make all the decisions.  I felt unsure about the stent because of the GA, but after talking it over with his regular doctor, he said the stent is a really minor procedure and what he would call a "no brainer".  OK, great, so that is scheduled for May 27th.

I ended up really glad I scheduled it, because my dad's blood work now shows he is dropped to Stage 4 renal disease.  He is also barely eating and sleeping most of the day.  I really think he might be in the early stages of kidney failure.

As an aside, I set him up for more substantial respiratory testing, and his COPD is classes as mild to moderate.  Some good news at least.

That is it for now.  Still planning a visit to a neurologist down the line.  More to come....

Lessons in Long Term Care

I am reposting this from a Note I wrote in Facebook because I thought it was worth having it here as well.

I haven't written a note in a loooong time, but considering the experience I am having with my dad, I thought this information might be useful to some people.  I think I am a decently informed human being, but I had all sorts of wrong ideas about this stuff.  I am kicking myself for not researching it earlier.

I have been operating under the assumption that when/if my dad needs help with things like toileting and bathing, it would be covered under the home care part of his insurance. Nope. And I think that is pretty much standard because things like that are covered in long term health care insurance policies. The only type of home care that is covered is when there are things needed that only a nurse can do.

I also had some sort of assumption that the board and care type of facilities, which require a higher level of care, were covered under the nursing home portion of my dad's insurance. Wrong again. If the person does not need actual medical procedures, which a nurse or doctor would need to perform, not covered. That is why the distinction of Skilled Nursing Facility is so important.

My dad's insurance, which he kept telling me has a lifetime cap and then he pays nothing, actually has significant limits. Yes, there is a lifetime dollar max, but there is also a lifetime limit of 365 days in a SNF. Even if my goal is to keep him home, elderly people often spend time in a SNF after surgery for rehab, and there might come a time when his needs exceed what can be handled at home. And in home nursing care has an even lower limit, like 120 days per lifetime iirc. Will he exceed the number of days? No way to know. Nobody has a crystal ball. But if he does, SNFs can run close to 20k/per month!  They are not always that much, but I think around 7k is the lowest around here - still way more than he gets per  month.  The money my dad has in savings, which he thinks is a fortune, won't even last him half a year!

Now I understand why I hear story after story about people spending their parents whole life savings on their end of life care. I know my parents would not want that, but they didn't really foresee any chance of having a long lasting illness that might need nursing help for more than a year I guess.  I don't think they really understood dementia as an *illness* either.  Cancer took my mom before her dementia got bad.  And it is way past too late to get that type of insurance. The cutoff is usually around 75, IF you even qualify.  Some conditions get you an automatic denial.

So what is the moral of this story? If you think you might have any assets you hope to pass on to your children, BUY LONG TERM CARE INSURANCE. You can get it for just SNF care or to have somebody come to your home to help you with daily life activities, when you are in a place similar to my dad, or for both. If you don't care if you spend all your assets and end up using Medicaid, it doesn't really matter. But don't gift any money to your kids near the end of your life (or find a lawyer to help you - more on this below in comments). That issue is one I am facing right now. My dad wants to give a good portion of his money to us (and by want I mean he is actually *agitated* by how much money he has in the bank and even *cries* about wanting to give it away), but if he needs Medicaid (Medi-Cal in CA), his benefits will get put on hold if he has been giving money away. And in some situations, a SNF can even sue you if you took money from your parent!  Also, putting a home in a trust does not make it exempt.  You can keep your home if the other spouse is living in it or you can transfer it to a child if they are disabled, a minor, or have been caring for you in it for 2 years to keep you out of a SNF, at least in CA.  Otherwise, expect to sell the home to pay for care. (There may be other exceptions - I am not a lawyer - but those are the only ones I have turned up.)

Oh and even if you don't think you will have assets to pass on, if there ever comes a time you want some daily assistance, but  you aren't sick enough to be in a SNF, expect to pay around $20/hr if not more by then, and there are usually hourly minimums. Looking into it for my dad, if I were to hire somebody to come twice a day to make sure he takes his meds, it comes to more than he gets per month, even with his pension.

So yeah... many lessons learned.  Things I wish I had known 10 years ago.  Possibilities I wish I had considered.  I hope this helps somebody look ahead in ways that will help them in the future.

EDITING TO ADD these comments about from a friend: As a RN Case Manager, my heart breaks everyday as I assist families as they navigate the confusing waters of moving their loved ones from the hospital to a skilled nursing facility. The worst part is telling families that the patient has not had a Medicare qualifying ( 3 midnights in an acute care hospital and meeting medical necessity criteria) and watching their hearts break when they realize they will have to pay privately and exhaust their resources. It's just awful. I would encourage everyone to look into long term care policies, but buyer beware!! Some are worthless and have lots of exclusions and clauses. One I reviewed recently had a clause that the insured has to self pay for 6 months at a facility before the policy would kick in. Mind you the gentleman had been paying over $600 a month for that coverage. He can't get out of the contract ... Kind of like a timeshare nightmare. Also, Medicaid is getting tougher. It used to be a 2 year look back in Wa state, now it's a five year look back... They are looking to see if assets were gifted or transferred within that time frame. I strongly encourage as our parents age, visit with a highly skilled elder law attorney and begin estate planning.

And I will add to this...  if your parents tell you they have done estate planning, don't assume they did a good job.  :/

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Putting on my Oxygen Mask

I heard this quotation applied to motherhood and life in general long ago, but never has it seemed more fitting for me.  Between laundry, dishes, preparing food, etc., there really doesn't seem to be any time for self care.  There are times when it is like I have taken on another child.   Here is one example.  My dad will sit down and Akasha will run over yelling, "I was going to sit there!!!"  Really?  This is the kind of thing she does with her brother!  

Or it will look like this in the space of a minute:  "Can you make me some fried eggs?" "Can you read this thing on my computer?"  "Do you know where my coffee cup is?"  "Can you throw the ball for me?"  (OK that last one was just implied by the dog, not spoken lol.)  I just try to remember to say yes. But not in that bad way of overextending myself (most of the time).  I learned a little mental trick from a friend years ago.  Saying yes doesn't have to mean that exact second.  If I say "in a few minutes", it might be met with the dreaded, "No, noooooooooooooooooooooow."  When I say yes, people tend to go back to what they were doing and I can take a few minutes to JUST BREATHE. 

This is about the extent of my self care these days - stopping to breathe and doing a little bit of writing.  I know I need to work on it, but one step at a time.  I don't always say yes, and I am finding myself becoming more and more short tempered, impatient and generally abandoning many of my parenting standards.  So I know something needs to shift.  I am not sure what that will look like now, but knowing it is half the battle, right?  

Just Because