I recently mentioned to someone that I had not updated the blog because I couldn't think of anything positive to say. After a bit of wrestling I came to the conclusion that I have a lot of positive things to say. Jerry and I shared a life filled with blessings since I was 17 and he was 22. People say he robbed the cradle and I'm glad he did. We were just children and have shared an incredibly rich life! I would not trade it for anything. Even though some people may not be able to grasp it....we are still connected and are experiencing a type of love that many will never be able to understand. For this, I am overwhelmingly grateful.
The journey of Alzheimer disease is not for the faint of heart. Jerry has now reached the level where I had hoped he would never be. That is the level where he is "napping" most of the time, slumped over in a chair and most of his waking hours are spent in a state of blank stares. Years ago, I saw patients like this and thought. "Oh, Jerry's not like this...he's not at this stage yet." But, I'm sorry to say that he has now reached this new place in his progression.
I know this is sounding very depressing and that readers are beginning to turn the post off. It's understandable. Like I said, "It's not for the faint of heart."
Here's where we all need to "man up". Jerry is not the only person in this condition. There are many suffering (actually, it is the loved ones and caregivers who are experiencing the suffering). Not only are they losing their loved ones, but they are losing everything! Here's where I am totally frustrated with how we care for people with these critical health needs. It seems we live in a society that no longer values providing a quality education for their young, nor taking care of its sick and elderly. It's every man for himself where the very wealthy can afford their private care and the indigent are on government aid. Those in between are screwed. Because of red tape and loopholes many private facilities will no longer even take medicaid patients.
Jerry is currently in an assisted living facility with a special memory care unit. His care is primarily custodial care. This means he is not capable of doing anything for himself and requires 24 hour care for even his most basic needs. To put it bluntly, he cannot brush his teeth nor can he sit on a toilet. He cannot get up out of bed nor lie down in the bed without assistance. Do you get my drift? He can, however, get up from his chair and come to me when he sees me. He still recognizes me when our eyes meet and I am committed to my last breath to see that he lives his last days surrounded with love, a feeling of security and not in a state of fear or abandonment.
Jerry was a very responsible family man and provider for our family. He did all the right things....went to school, sacrificed, worked hard, saved. I could not have asked for a better and more caring husband and father for my children. But the cost of this kind of illness is devastating and there are very few resources for assistance. The "A" word is shunned. Everyone knows how devastating it is..but many say their little platitudes then turn a blind eye..hoping it will never happen to THEM.
WELL PEOPLE! WE"D BETTER WAKE UP!!!!! Very few people can prepare for this kind of catastrophic cost. It is only by the grace of God that we've survived for 13 years. And if you've been a hard worker your entire life and earned too high of a social security check...you will NOT get any help from the government. Neither will private medical insurance nor government Medicare touch you. So you'd better have thousands upon millions in your IRA accounts. When I say check "too high", I'm talking $1500 per month in social security. If you receive more than that...there will be NO government assistance in an assisted living facility. You might, however, possibly receive assistance in a skilled nursing facility or "nursing home." MAYBE. The rules for skilled nursing are different. Which actually costs the government MORE money. Go figure!
One wonderful gentleman at Jerry's facility is over 100 years old and has been there for many years. His social security check was evidently below the threshold so he has been able to be supported my medicaid. Recently, however, he received a "cost of living" raise on this social security check which put him $14 over the limit. He will no longer be able to receive medicaid assistance for the assisted living and will now need to be moved to a skilled nursing facility that will accept medicaid. You got it! In order to have medicaid pay for his care...he will have to now move to a MORE EXPENSIVE facility, which will NOT be able to meet his needs...and will cost the government MORE. Figure that one out.....$14 verses $$$$$$$. Your tax dollars at work!
A nursing home for Jerry scares me to death. Because our funds are running out, I am trying to prepare for the next step. IF I put him in a nursing home, we may possibly be able to receive some help. (the jury is still out on that.) I've visited a few skilled nursing facilities in the last couple of weeks. First of all, I will be balling my eyes out if I have to move Jerry from where he is residing now. I am so confident in the care he is currently receiving. He is secure and I know he feels loved and cared for. THAT IS HUGE! Where he lives there is a true sense of family.
The most recent nursing home I visited was beautiful. It was a brand new "state of the art" facility with clean, tastefully decorated rooms. dining rooms and exercise equipment. I mean, it was like a resort (sort of.) My first reaction was a SOCK IN THE GUT, "he'll feel all alone and abandoned." This place was so large that even I got lost. "How could a dementia patient ever survive?" I thought. How in the world could a nursing staff even know where the patient was...much less, know if the patient needed to be "pottied?" This seemed to be a facility for "healthy elderly" or for those who are wheelchair bound and "contained". The dementia patient has totally different needs.
Unless there are tremendous medical needs, a dementia patient primarily needs assistance and stimulation. If not, they will either sit, slumped over for hours on end in wet diapers, or will wander up and down hallways and be at risk of falling. They need constant supervision, like a child in a play area. (Yet, they cannot be treated like a child. They need to be treated with the respect they deserve.) Who knows.. maybe that's how people think they should be treated....just let them wander! Let them sit in their #@#$@#$.....they don't know anyway. BUT, THAT IS NOT TRUE! AND THAT IS NOT CARE! AND THAT IS NOT THE WAY ANYONE SHOULD BE CARED FOR! By the way...in some cultures the elderly are actually treated with resect. Hmmm! What a concept! (Remember YODA?)
Can you tell I'm just about over the edge over the injustice of it all?
I could go on and on. I know this post has gotten way too long. It's just time that we change some of these antiquated laws to be more efficient in the way we treat alzheimer/dementia patients yet be more effective in the cost of healthcare. Our system is terribly broken.
In the meantime, if we do not get serious....we'll all be in eldercare factories before we know it.! IT'S PAST TIME TO GET SERIOUS!