I've adopted....an 84 year old man....

As I write this, my 84 year old Dad is asleep on the futon in the living room which has become his bedroom. My 11 year old is at dance class.  My 9 year old is watching a movie, and my 7 year old is playing Star Wars on the Wii.  My husband is at work, and here I sit. I quit my full time job as a home health nurse back in June to spend more time with my parents as they seemed to be going down hill.  It was a good decision, and one I am thankful I was able to make. I don't know how I could have worked full time and taken care of them.

It was a bumpy night.  The kids slept fine, and my husband got a good night's sleep in our bedroom, but I slept on the couch next to Dad, and during the night, he had many hallucinations and frightening dreams that could only be soothed with a pain pill, a back scratch and a head rub.  With a house full of kids, it's a blessing that he can't hear very well, but it would be nice sometimes if he had more moments where he at least seemed to hear me.  I'll say things like, "I'm your daughter.  You're my Daddy.  Today is July 11, 2012."  He is good at pseudo listening, but I've learned that he really doesn't remember past a few minutes, but can remember being on maneuvers as an 82nd Airborne paratrooper back in the 1950's in North Carolina.  He talks about that a lot.

We've had quite a few bumpy nights with my Dad this summer.  My Mom passed away on June 28th.  She had become incapacitated over the last few months because she had a lung infection and decided to stop taking the antibiotics for it because she was convinced they wouldn't work.  We convinced her to finally go back into the hospital to get some pain relief.  She died two days later, but felt no pain as she passed.  My sister and I were with her.  I know she is happy now.  But Dad is still tormented, and his vascular dementia has progressed to the point where we really don't know how it will all end.  I know it is in in God's hands, and that gives me hope.  Without that, I would be depressed and on anti depressants myself.

Which brings me to why I decided to write this blog.  Dad had been on anti depressants for 15 years till one day, last October, he decided to stop taking his antidepressants cold turkey which everybody knows is a dumb idea.  He never really got back to a normal level of function after that decision. His brain chemistry had now been altered.  Now, the man who had been so wise, practical and logical with everything from money to dealing with people had now started to show the first signs of dementia which is a terrible disease.

I'm now living the results of his decision because what we have found out about Assisted Living Facilities (ALF), Skilled Nursing Facilities (SNF) and other elder care issues has been enlightening, and a friend of mine suggested I share that information.  I will have to preface it with this statement though:  I am only reporting my experience.  I have no ties to any company, and I don't even have any ill feeling towards any of these organizations.  I do believe that somehow the almighty dollar has created a problem for the elderly which should be eye opening and terrifying to everyone.

First of all, we discovered that there are places for people like my Dad.  Since right now, he is still semi ambulatory and is able to feed himself, he could go to a Skilled Care Assisted Living Facility or "SCALF" where for $3950/month, they would provide food, lodging and scheduled activities.  For an additional $450/month, they would even give him his medicines (which of course would have an additional fee for each medicine), but if he got a boo boo or needed some kind of nursing care, they would call home health.  I know that because I used to visit patients who lived there. Apparently, band aids would be extra...as would shaving or hair cuts, but they would give him a bath 2 days a week. How lovely. Other costs he might incur would be any kind of damages or things he broke which is of course understandable, but a few weeks ago, before they got his anti psychotic medication leveled out, he took a hammer to his bathroom door because he was convinced it needed to come off.   HOWEVER, the biggest eye opener to the Assisted Living Facility racket is this: If he should wander at night into someone else's room, we would be required to hire sitters (at $16.20/hr) to sit with him at night or we would have to sit with him or he would be asked to leave. This defeats the purpose of having him in a facility which could charge at least $4400/month.

Why not a traditional nursing home you ask?  Well, we actually tried that.  The doctor told us that we could admit him to the hospital for 3 days, then Medicare would pay for 20 days of SNF and he could be admitted to a locked memory care unit.  After that, Medicare would pay for 80% and his secondary insurance would cover the other 20% for another 80 days. We (the family members who were actually taking an active role in his care) were very excited at the possibility of 8 hours of a non hallucinatory environment for sleep.  But this was a pipe dream.  The case manager at the hospital either didn't understand English or didn't care because he set us up with a SNF that had a bed for him, but as it turns out, there was no bed in their memory care unit, and to be honest, I think it's just as well.  He was discharged from the hospital on the 4th of July and taken by ambulance to the SNF, taken to a room (which was right by a door that said alarms would go off if opened, but I saw first hand that wasn't the case), handed a call button and told to "Call us if you need us."  At this point, my sister and I are both crying, exhausted and tired of having the hope ripped out from under us that we would actually find some place safe, affordable and helpful for Dad. I said, "I'll just take him home with me.  I can't leave him here." My sister had a good analogy to what it was like.  She said, "It would have been like leaving your 2 year old in an apartment building, handing him a phone and saying, 'Call me!'."  I later found out from a social worker friend of mine that SNF's are trying to get rid of memory care units because the assisted living facilities provide care for them.  The problem is, as it usually is with everything...money. They are all private pay.  Oh, and a small foot note to Long Term Care Insurance policies which he didn't have, but everyone needs to know about is this:  Check the fine print.  A lot of those long term policies have a clause that says the money can't be used in case of dementia or Alzheimer'.   Keep that in mind.

So here we are. My Dad has done well for the week I've had him here.  He hasn't been violent, and hasn't wanted to wander outside the house. We've even had some very sweet conversations where I actually think he remembered who I was.  We've hired a sitter company that will help when we need to go on vacation or just need a break. I guess we'll just take it one day at a time. Isn't that what everybody says?  "Just one day at a time"...like there's any choice other than that anyway.   But I do. I'm learning to "find the happy in the crappy" as I mentioned on a Facebook post one day.  As long as he doesn't get violent, or destructive, I'll let him stay here. I need to get his days and nights switched back to normal. My husband has been a jewel through all this.  He is supportive mature and even knew what to say to make me feel better. He said, "Well, we can still keep looking for something that would be good for him, but I figure that we should make his last time on Earth as comfortable as possible because he had a rough time during the first part of his life." He did have a hard childhood as a poor farmer's kid in Hardy, Arkansas in the 1930's, and he worked hard all his life to make sure his children had opportunities he didn't have. He was a good Daddy, and I want to be a good daughter...even if I am having to live as a sleep deprived Zombie.