“I dipped my toes into the water and I got soaked to the bone…”

I dipped my toes..

As many of you know who read this blog with any regularity, I had my mom living with me, and she had end-stage Alzheimer’s. It’s been a year this month that she passed away. And I still have my dad. He lives on the other side of the country. His wife and stepdaughter had him admitted to a memory care facility. And he is mad. I mean he is completely pissed off.

He called me – twice in 5 minutes – yesterday, pleading for advice for a problem he doesn’t have and only imagines. Delusions are a part of his daily living. He ranted and raved at me for 1 hour and 35 minutes. I barely got a word in. Entering into Alzheimer’s World is like Alice going down the rabbit hole. I have been down some amazing rabbit holes with my mom, to be sure. But she got kind as the disease progressed. She passed over angry right around the time she was diagnosed. She accepted things. It still made her angry, but in some odd way, as she approached death, she got quiet and comfortable with herself. And she was great to be around. Not my father. My relationship with him has been chaotic at best. So very stressful. And each time he would nose his way in, my family would suffer. Because he treated me so poorly and my kids and husband despised him for it. And as this delusional aspect of dementia has grown stronger, he is more and more difficult to deal with. And I have not seen him in over 20 years – he lives on the opposite side of the country and was always too busy for me and mine. But now that he is alone in a facility, he wants me, his oldest daughter, to make things right. Like I have any authority whatsoever. He signed all that away years ago to his wife and his middle stepdaughter. Because of Hippa – I have no rights where he is concerned. And he is mad I cannot fix things.

Internet photo – but it looks a lot like my dad!

I tried to reason with him and finally got quiet. I had him on speaker on my laptop and actually played solitaire while listening to his rant. I didn’t bother commenting – it did nothing but fan the flames of his intense anger. It may seem strange that I am this bothered, but my dad has always been just out of reach for me. I never performed quite good enough; I was never thin enough; I didn’t become a doctor; I homeschooled my kids; we attended the wrong Church…it goes on and on. And my entire life I have tried to be the daughter that made him proud. Now, at 95 and in end-stage dementia with delusions, he tells me he loves me, he is proud of the life I have made, he thinks our kids are amazing adults, but he’s mad he has no relationship with any of us. His rant was pretty thorough yesterday. At one point he told me he never wants to talk to me again because I always make him so angry; in the next breath he says I’m the only one he ever wants to talk to because I challenge his intellect. *Sigh* It was a long, long, conversation.

The inner me…

I know he gets to me because I am still that 6-year-old girl trying to gain daddy’s love somehow. Dad was always working. And when he came home we were instructed to be quiet and not make noise or upset him. Mom had his gin-and-tonic waiting, all dressed and cleaned up, dinner cooking. Everything had to be clean and neat, because he was under so much stress. We had to be clean, dressed, and playing quietly, homework done, in our rooms. Dad was working most of my childhood on getting a man into space before the Russians. We lost that race; he had a mental breakdown. I was around 9 or 10 years old. Then we had to be really quiet! As my brother and I entered our teens, dad changed careers and had his own business. He was even more busy. Our lives were the dichotomy of feast or famine. LOL. We’d have lots of toys like boats and cars, and then we’d get food stamps. It was chaotic and nothing we could count on. We were forced to work at his plant on afternoons and weekends. It was all or nothing. And it still feels like that rat race when I speak with him. He is still on the treadmill… I wish he could have read, “Who moved my cheese?” It truly may have helped. I think dad is totally the “hem” character. If you haven’t, you should read the book!

Still chasing my cheese…keeps moving…

And so how do I help a 95-year-old who has delusional dementia, and who lives across the country? *sigh* For me, I go back to my faith. I have no authority in dad’s life to make any changes, for better or worse. That is in stone. I live literally 1000s of miles away and have not seen him in over 20 years. We were estranged for several years until this past year. Our relationship is basically one where he rants and I listen. I cannot affect any change in our relationship. My brother says we can never get our dad back, nor have any real relationship with him, other than to listen. Soon, we both believe, he will forget about us all together. Maybe that will be a blessing. And then we would wait for that final telephone call. I’m not sure. But I know this – God is merciful. My dad needs abundant mercy. And so I pray for that. For him. For me. For my entire, extended, messed-up family. I came across these lyrics today, and they made me smile and feel the love of God in my life. I will end this reflection with them:

I dipped my toes into the water and got soaked to the bone; I turned my gaze to my Father, and suddenly I was home.

I gave everything away and I became rich, indebted to the abundance that You so readily give.

I became obedient and my freedom flourished like a bird; I became selfless and fell even more in love.

I dipped my toes into the water and was soaked to the bone; I turned my gaze to my Father, and suddenly I was home.

Dipped my toes by kinnship

“….a single hour to your lifespan…”

One thing that is so frustrating for so many caregivers is the endless red tape that is we have to untangle to get loved ones the care they need and require. Did you know that even with supplemental or “gap” insurance, benefits that cover prescriptions run out before the end of the year? Why is that, do you ask? Because the drug companies charge so very much for their drugs. And some of them do not come in “generic” so you have to pay the extra for that name-brand prescription. And it is medicine that keeps the disease at bay – it slows its progress – it makes the day smoother for everyone. And the cost? More than $300 per MONTH. For just that one medication.

And you know what is sad? There are literally millions of people with Alzheimer’s who use this medication. Millions. And is there a cure? No; there is not. The medication just helps to slow the progress. But know this – it is a fatal disease and it always progresses. The medication just eases us all into it, until it no longer matters if they take the medicine or not. And even if you have savings or good retirement programs, if you run into a disease like Alzheimer’s, all that planning may come to naught. My mom lived in a beautiful retirement home. She had assets. But she outlived it all. She is vigorously healthy – other than this stupid disease. And now, she has literally nothing. Trying to find a doctor that takes Medicare is (a) hard and (b) finding one that deals in Alzheimer’s? Double whammy. Then add in all the expenses of these medications, and the fact that they have pretty much run out for the year (it usually runs out in October every year) and you have disaster. Because as I struggle to find a funding source, I am taking a person off her usual round of medication and only administering it every-other-day, to make it last until January. Why? It’s when the funding re-applies to her medication portion of Medicare. Our days are now back to what they were when she first came to live with us – precarious at best.

So now I get to delve back into the miasma known as Medicaid. If you have never tackled trying to get covered by a federal aid program, you have missed nothing exciting. I used to manage a welfare office, and I was in charge of 28 clerks. All they did, all day long, was process welfare applications. I used to review them for errors. And I had to go into the system and make adjustments. I had to attend meetings where new systems were taught to all of us at the supervisory level, to instruct our clerical unit. So it is not as though I am unfamiliar with governmental online programs, nor how they work. But this is day #2 that I have attacked Medicaid. Is it 5 o-clock somewhere?

And another part of being an in-home caregiver for someone with Alzheimer’s – you cannot leave them alone for too long. It makes doing this a stop-and-start process. So yeah, another facet to caregiving that people do not think about.

In the book of Luke, chapter 24, verses 22-24, the Lord tells us not to worry overmuch about these things in life.

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air: They do not sow or reap or gather into barns—and yet your Heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his lifespan?

And why do you worry about clothes? Consider how the lilies of the field grow: They do not labor or spin. Yet I tell you that not even Solomon in all his glory was adorned like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the furnace, will He not much more clothe you, O you of little faith?

Therefore do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans pursue all these things, and your Heavenly Father knows that you need them. But seek first the kingdom of God and His righteousness, and all these things will be added unto you.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Today has enough trouble of its own.”

And frankly, my faith is what spurs me onward. So today I will put into perspective these nasty, little, pains-in-neck that are part and parcel of caregiving. As I head back to that fun website of horror, Medicaid, I will think about the leaves changing color and time passing, and God at the helm of it all. God can overcome Medicaid applications. And I am hitting up the angels on my shoulder for some help, as well as asking for the intervention from some pretty amazing Saints who have gone before me, too! We all got this!!!

 

Today, I am breathing….

Abba IsaiasToday is Monday…in so many senses of the word!  First of all, our boiler, which provides us our heat, sprung a leak all over the garage last night.  So my husband, being judicious, shut off all the hot water to the house.  All the hot water.  This morning, the plumber told us he was on his way…that was at least two hours ago.  In the meantime, it rained all night long, and is still raining.  It is pretty dark outside.  They are laying all new electrical lines through our area and actually putting in sidewalks and streetlights (we live out of town).  This morning they “accidentally” cut our power.  Yay.  No hot water, no heat in the house, no sunshine, and now, no electricity.  On top of that, I had been trying to contact my retirement board from my former governmental employer – need I say more? Customer service is not their forte.

And so I found myself, sitting in the dark, in a sweatshirt on the couch with my newly-hairless mini-Schnauzer sitting next to me shivering, in complete silence, contemplating this turn of events.  I had been espousing Holy Silence at Church just yesterday.  I had joked about how loud life is these days with all the electronic interference.  I think I was just tempting Our Lord to give me an opportunity to practice Silence.

Frustration  does not even come close to what I am experiencing.  And I remembered the graphic above, quoting Abba Isaias.  Boy, did I need that!  In his book, “Our Thoughts Determine Our Lives,” Elder Thaddeus tells us that we can control our environment by how we react to it and by what we give back to it.  I was dealing with a crabby woman on the phone this morning, who needs so many lessons in customer service, and I caught myself snipping at her (“What do you mean, 4th from the bottom? The bottom is the bottom, there is nothing listed below the bottom of the list.  That’s why it is the bottom!” To which she replied, “Well, fine then; it’s the 4th UP from the bottom.”) and I stopped myself from going further and literally prayed for her in my mind.  I have worked in customer service in retail, for various governmental agencies; I have waited tables and tended bar!  I get the whole customer service thing and I realized, “It’s Monday!”  And I will be held accountable for the thoughts I have, and the way my thoughts project into my environment – my thoughts came spilling out of my mouth before I had the chance to edit them.  I apologized to her, telling her I did not understand the jargon common to retirement boards, and asked if she could please assist me; her demeanor immediately changed and I castrated myself for having let my frustration get the better of me.

Life has a way of bringing us up short some days.  We are hit right between the eyes with whatever weakness we seem to be trying to work on.  I had a priest tell me one time, “Never pray for patience, because that’s when all hell will break loose.”  He explained that God just doesn’t give us what we lack; He teaches us how to have what we lack. If we lack patience, He will use every opportunity available to teach us how to be patient.  With my frustration reaching its peak early today, God has been thrusting me into situations where I am learning to temper my frustration with kindness and to try to learn to relax in these situations.  Mark Hart the Bible Geek (check out his Facebook page) tells us, “God’s got this” and I totally believe that.  God does have this, and all the days of my life. I need to learn to get into sync with whatever He has for me. I need to slow down and be quiet; I need to learn to listen.  Is my life going where I want it to? No.  Am I better off than yesterday?  It depends on what we are qualifying.  I am better off because I have a great place to live (other than it’s dark and a little chilly in here today!!), I am close to my family, and my Church community is continually surprising me and blessing me with new friends and a wonderful place to worship.  Financially? Absolutely not.  We are pretty much at that desperation point, but I know God’s got this, too.  His timeline does not always coincide with what I think I need or what I think needs to happen, but that is what faith is all about.  Allowing God to work.  Giving Him time and space to evident Himself in all aspects of my life.  I keep thinking that the Lord has way more faith in me and my perseverance than I do, and quite often I look to heaven and make the “time out” sign the refs in football use!  But still, I awoke today. I had a visit from my grandson and daughter-in-law, who brought us some hot coffee.  My power was restored, by men working in the pouring rain, so I could sit here and type.  God is good and He is working.  “All good things come to he who waits,” as the old saying goes.

DidacheAs the Didache explains to us, the troubles that come to us are from the Lord. He is teaching us what He believes we need to know.  And so I hope in the Lord. I offer my frustrations to Him; I offer Him also my Silent moments, asking that He enter in.  I thank Him for my next breath, and I praise Him for being in my life and loving me, even when I trip and fall so far short.  God is good.

Breathe today