Wisdom gained. Things I had wished I had known before. Sharing.

UnknownLESSONS LEARNED

With elderly people, their situation is always very fluid.  I really never knew what I would find when I visited my dad each day.  Sunday was no different. I received a call from the facility saying he had fallen but he was okay.  That was at 1:30 pm.  I came over to see him an hour later and the first thing I did was rest my hand on his thigh and ask him what happened.  Upon placing my hand on his thigh, he grimaced.

LESSON:  Facilities tend to always say “he’s ok” after a fall.  Particularly with folks with dementia because they cannot adequately express their pain or difficulty.

LESSON LEARNED:  Always evaluate yourself whether, in fact, your parent is “ok.”

It was a Sunday, and with our healthcare system, apparently you really shouldn’t need help or get sick because it’s difficult to find a nurse.  In our particular situation, the nurse had just left.  Supposedly, she did check him out after his fall and deemed him “ok.”  So when I asked a med-tech (the closest medical professional I could find on a Sunday), she assured me that since he didn’t seem to be in too much pain, we could probably wait until tomorrow to have an X-ray.  They can do x-rays right on site.  I knew he was in pain, but it seemed to be only when he moved in a certain way.  So I went along with it and waited until Monday, thinking he’d get an x-ray first thing.

WRONG.

The mobile x-ray people roam from facility to facility doing these X-rays and they get to you when they get to you.  They can’t really tell you when.  As the day went on, my dad started to slump sideways in his wheelchair and then was experiencing muscle spasms in his back.  By 2:30, I was really agitated at having to wait so long and was ready to call 911, when the person finally arrived.  What I didn’t realize is that they would have to move him from his wheelchair to the bed in order to do the X-ray.  The whole reason for not taking him right to the hospital is because I wanted to minimize movement.

LESSON:  Ask questions.

LESSON LEARNED:  Do not assume anything.

Two hours later (at 5 pm) it was confirmed that he had fractured his hip. So, at the end of the day, we had to call the ambulance anyway.  Off he went to the hospital. When we arrived, the first thing they told me was that they don’t really rely on mobile X-rays; they would now do their own X-rays. So that was a complete waste of time and an entire day of possible pain I had put my dad in.

LESSON: Do not trust anyone.  Ask questions and more questions.

LESSONS LEARNED:  Skip the mobile X-ray. Go right to the hospital where there is real medical expertise.  What they have in these assisted living facilities isn’t the same level as what is available at a hospital.

Now sitting in the hospital a full two days after my dad’s fall, awaiting hip replacement surgery (that could have been done yesterday, had I gotten him to the hospital directly),

Live and learn.  I’ve lived it, now you can learn it so you don’t make the same mistakes. What lessons have you learned in your caregiving?  I will help you if you help me.  No one needs to travel this road alone.

If there were books on eldercare, no one would read them because we all think our parents will always be there.

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The funny thing about this experience is that there are only two times in my life when I have felt so unprepared.  The first was when they handed me my son after he was born and the second was when I got the phone call that my dad had fallen and was in the hospital in Iowa…and I was living in Pennsylvania.  The difference between the two scenarios is that in the first, I had a 9 month advance notice that this baby was going to be handed to me to care for and with this most recent scenario, I had zero notice.  I thought I was doing everything right.  We had the talk about advance directives, he had all the appropriate power of attorney paperwork drafted and appointed me as his health care proxy.  Of course, he never really explained fully what that meant.  I knew that I would be making health care decisions for him, should he be incapacitated and yada yada yada….the funny thing is, is that the state of denial is a very long river and I was on a long long cruise.  I assumed my dad would just drop dead one night, as my mother had when I was 27.  He even told me that was his plan.

Best laid plans.  Instead, he is living in a memory care unit for people with dementia and needs a very high level of care just to manage his activities of daily living (eating, dressing, bathing, taking medicine).  His body is fairly healthy for an almost 89 year old guy.  His mind, however, is slowly fading from us. Each day I try to assess who the guy is in front of me.  Will he remember who people are?  Some days he does and other days, he has no idea.  When is it my turn to be forgotten, I wonder.

Shopping for an assisted living facility

Dad's final (I hope) address
Dad’s final (I hope) address

When you are dealing with a sudden crisis, like a fall or, in my case, a cross-country move, time moves in lightening fast mode. You have to, very quickly immerse yourself in what an assisted living facility offers, how different they are one from another and hone in on exactly what YOU are looking for…all the while understanding that you will never find everything you want in one place.  There will be a bit of self-talk where you negotiate with yourself over this and that, and in the end, you will feel as if you are putting your parent in the best place available to you.  That last sentence is critical, because where you WANT your parent to go isn’t necessarily where they will ultimately be able to go.  Many things go into this decision and not all of them are yours.

My dad had to be evaluated by the facilities we were considering (all of them doing so, long distance).  Long distance evaluation automatically builds in a very conservative approach by the facility doing the evaluating because no one wants to say “yes” to your parent and then when they arrive, find out they really can’t meet their needs.  There really isn’t a substitute for in-person evaluations so if you are working with a facility with a national footprint, they may be able to send someone to see your parent from a nearby facility.  Push for this if it’s available as that is the only realistic way to get an accurate evaluation.

What I will say is Sunrise of Paoli evaluated my dad over the phone and took a risk on bringing him to their facility.  They have been very good at working with me all along the way, to make sure my dad’s needs have been met and never once gave me an indication that they mis-evaluated him.  I never felt that he was at risk of being shipped to a nursing home (which is the next step).  Sunrise’s philosophy is more of an “age in place,” meaning that unless he needed a durable piece of medical equipment like a ventilator or respirator or feeding tube, he could stay here.  I took comfort in that because my dad’s living will stated that he wanted none of that anyway. So if we got to that point, I would call in hospice.

The journey to finally settle on Sunrise was a very speedy evaluation of about 7 other types of facilities.  It involved taking tours, talking endlessly on the phone with sales directors….all in the course of about 7 days because the rehab facility my dad was in gave me about one week notice that he was being discharged, so I had to move fast. Best advice….start thinking about this stuff BEFORE you need it, so you don’t feel pressured to make a fast decision, as I did. Other piece of advice….don’t wait until a crisis to move your parent closer to you.  Even if they don’t want to move, if they have assigned you as their health care proxy, you need to have them close by to do that job effectively.  Don’t wait until they are so frail that a move becomes impossible or difficult.

Back to the facility. There were ones I liked a little better, but at the end of the day, Sunrise was the only place that would allow what’s known as a “two person transfer.”  A two person transfer means that an individual needs two people to help him/her get out of a chair, into the shower, onto the toilet.  Apparently, this is a biggee.

In Iowa where my dad was living, once you were a two person transfer, you had one choice:  nursing home.  I refused to allow that, which is why I moved him to Pennsylvania, not only because he’d be close to where I live, but also because the laws in Pennsylvania were different.  In this State, there are four levels of care, not just three as in Iowa.  In Iowa, there was independent living, assisted living and skilled nursing. Once you needed two people to help you, you ended up in skilled nursing. In PA, there is independent living, personal care, which is similar to assisted living in Iowa and then assisted living. Here, in assisted living, there are SOME (not all) facilities that will accept a two person transfer.  Sunrise is one of them.  Thank God.  Sunrise is a lovely community with really great staff and the environment is decidedly not institutional.  Are there things I wish were better?  Of course.  But overall, it has been a positive experience.  And the best part?  He lives a matter of blocks from me, so I can visit him and help on a daily basis without having to provide the bulk of his care, which at this point would be too taxing for me.

Nursing homes are not for the faint of heart

Dad spent almost six weeks at a nursing home in Iowa, starting out on the regular rehab floor.  He was in such a terrible mental state when he arrived, he went for FOUR straight days without sleeping.  This sent him into a psychotic state and the nurses on the regular rehab floor couldn’t handle him.  He was constantly trying to get up out of his chair (he was a fall risk), out of bed, wasn’t following directions and was really just out of control behaviorally.  This was not my father.  He is the calmest, sweetest, most mild mannered individual you will meet.  Yet, here I was getting reports of him throwing nurses against the wall, yelling at them, being belligerent and worse.  I had no choice but to agree to have him moved to the memory care unit upstairs.

This was the worst thing I could have done, although I don’t think I had much choice.  He was given an anti-psychotic medication and moved.  The good thing is the meds got him to sleep, finally, but they turned him into a zombie.  He was surrounded by “one flew over the cuckoo’s nest” and was left to just sit in his wheelchair for hours on end, in between PT and OT visits.  The PT and OT was completely ineffective because he was so out of it due to the antipsychotic meds they had him on.  He couldn’t focus, was constantly falling asleep and had no motivation to do anything.  Not surprisingly, he was discharged from Medicare after only 35 days.  I am appealing.

My only advice is this.  If you have a crisis like this, and you are the health care proxy (meaning you are charged with making health care decisions), make sure you are there IN PERSON.  Do not try to do this long distance.  IT DOESN’T WORK. That is my biggest regret.  Since I had just been out there to move him, I let others step in and visit, as I had other things going on during that time period that prevented me from getting away so quickly again.  BIG MISTAKE.  If you aren’t there…at every appointment…you cannot adequately advocate for someone. Lesson learned.  I immediately went to work putting in place a plan to move my dad out to a place close to me, so I could do this job right.

I couldn't get him out of here fast enough
I couldn’t get him out of here fast enough

There is no preparation for taking care of a parent.

When my dad fell in mid-June, I was completely unprepared for what was to follow.  Although I had been managing his care from across the country for several years, I didn’t anticipate how the world could so suddenly change for him (or for me).  I came in town to move him into assisted living (across the parking lot from Independent Living, where he had been residing for 3 years).  I purposely waited for him to make the decision, as I didn’t want to push him into something he wasn’t ready for.  He decided it was time because “I need help putting on my shoes,” he said.

Almost immediately when I moved him in, I noticed a profound change.  He seemed almost completely helpless.  It was way beyond “I need help with my shoes.”  He needed help with EVERYTHING.  I attributed it to the stress of the move.  I stayed with him for a week, making sure he was settled in and then left, in hopes that he would return to the way he was.

Two weeks later, he fell outside his apartment and fractured his pelvis.  He ended up in the hospital and within hours fell into a state of delirium, a place where we weren’t sure he would return.

Talking to him on the phone was like talking to someone who had lost ten years of aging.  He was chatty, energetic….and made literally no sense.  He was speaking a different language and talking about aliens and seeing things in the room that were not there.

This went on for 5 days and then magically on day 5, he emerged from wherever he was and returned to us, cognitively…until the next day when he was moved to a nursing home for rehab.  Within six hours…delirium…again.