Al’s Changing Days


A few days ago, Al got up in his usual morning routine, and came to sit on the couch, instead of doing his breakfast first. He told me in his exact words, that he had the most excruciating pain he had ever felt in his leg. I looked at it but I saw nothing. He told me that his leg was swollen, but my naked eyes could not take it in. From that moment on, the rest of the few following days have been very sad and depressing for him. He has had pain and more freezing. I talked to the nurse and she said the freezing mode of his legs was causing rigidity in them and the muscles were downsizing and he would feel this pain, but they had him on the best pain medications.

He can have moments of joy, but I see mountains of pain and tears. I had pretty well made up my mind to go ahead and place him for his own sake, not mine. It was a difficult time, processing agony for me, but someone had to do it, and my name was being called by the pitcher.

Have you ever had ideas that you thought were so good, only to have them squished like an ant you step on? This is the way I felt after I talked to the professionals and then confirmed what they had said by googling.

Did you realize that there were new health care plans in effect that have been placed recently that make it difficult to place another person, if money is being held in certain trust accounts? There is, and it is sad.

The law now says that for certain trusts, and there are many that are included, have to be paid back to the state, once the person dies. I will not go into grave details, because it is complicated, and most of you are not involved with placement thoughts in your homes, but in the end product, someone , can be made to pay half of what Medicaid paid out when a nursing home patient passes away.

The thing that bothers me is with the new laws coming into effect, and our President forever changing the health care here, one or more persons, could end up having to fork over monies they don’t have in order to help programs get a refund for what they loaned out.

First of all, I didn’t know we were being loaned money. I thought we paid in through all those little items showing up on our paychecks for years and years, but then, I remembered how in debt our country is and the threats of social security not even being there for ones younger than us is real.

On top of all that, I was given a quote of over five thousand dollars to do all the paper work for the trust to properly make it into a state program.

Did you also realize that once you are admitted to a nursing home or some other type of home, you are sometimes giving up your home and your money assets, and did you know that if the person changes his mind a while down the road, and wants to come home that there are no monies there for further care and help at home?

It is sort of no win situation, unless you are so severely mentally handicapped, that everyone knows there will never be a return home, or you are so elderly, you would also fall into this category.

I have made my final decision to not place, and to hire extra or give more hours to caregivers in order for Al and I to have our breaks in our routines

Last evening, although I saw tears most of the day, he was willing to go out to a drive-thru supper and continue on to a car show here in town. Both went fairly well, except the car show. I got the scooter out and placed together, and got him situated in the driver’s seat, and off he went, but instead of stopping and talking to all of the owners and everyone on the street, he made quick loops around the show as if he was the driver of a race car in a hurry to win. He came back to where I had been relieving my back pain by sitting on a chair, and sat there, tears running down his face for no apparent reason.

I asked him if he was finished looking at the cars and he said nothing. I asked him if he would like to have some ice-cream that was being sold for the event, and he nodded in affirmation. He scooted and I walked over and bought him a nice two-dipper and had it placed in a bowl instead of a cone. We walked back over to my single chair, and I gave him the bowl and spoon, and he sat there, doing nothing. His tremors were acting up, so my heart was bouncing around at each time the bowl tipped to this side and then the other. He did not try to take a spoonful of the ice-cream, that I would have gobbled up, myself, but knowing it was full of sugars, I left it alone.

I asked him if he wanted help with eating it and he nodded yes once again. So I spoon fed him. I had also had to do that for the same day at breakfast. He had waffles and could not cut them up to eat them, nor could he place bites in his mouth. The tears were running down his face as I was feeding him his ice-cream, as I knew in my heart, we were out in public, and he was dying inside of embarrassment from people watching him being fed, although, I did not see anyone particular stare at him or I, and certainly, no one came to our side and questioned either of us why this adult was being fed by someone other than himself.

After the treat was finished and the bowl and spoon were properly disposed of he made no movement, so I asked him if he was ready to leave, and he said yes. He talked! Yes, I am ready to go home.

I am not sure how much he enjoyed this time out, but I do know it was not as much as he used to. I put him in the car, and tore the scooter apart, and we took off for the comforts of his bedroom and his bed, that he is coming to know better each week, as he lies more on it now to watch television.

I have hired a new caregiver for respite care, and I can only hope that she took heed of my words, that I only want someone who is interested in being with Al, and staying long enough to get to know him, and that I will not tolerate excuses of why you can not be here, unless God has called me and told me you have passed on. She is to start Tuesday of the following week for four hours. We shall see how it goes.

Now that I have slept on all of this new information thrown at me, and I see how Al is becoming, I ask for prayers in hiring another caregiver who can give more hours on a daily basis, helping him with feedings and showers . I would love to have a caregiver that will be here for six hours a day, Monday through Friday, the same caregiver who would shower him, help with his feedings, when needed, and to spend quality time with him. I do not like having caregivers with different names for different jobs. Let’s find one who can do it all for Al’s sake of security in one person, and also my sanity when I go to pay the person, and have to keep looking back at the books to see how many hours this or that person worked this week.

I know that many of you pray for Al and also for me, but I am asking for bigger request. One caregiver, who will stand by us and stay with us until everything is in order.

49 thoughts on “Al’s Changing Days

  1. Have you considered a local caregiver’s support group? Local means they might have contacts for finding helpers. The job you are doing is one of the hardest and most draining. My heart and prayers go out to you. Remember to nurture yourself.


    • there are no local caregiver’s support groups here. you have to hire a private caregiver at your affordable prices, or go to an agency and pay their prices………….sad, that our town has nothing for caregivers or Parkinson’s. I heard they have one P. group that meets once a month with the doctor being Al’s doctor who has stated there is nothing more to be done.


  2. Dear Terry, I have been rooting for you to make that decision, and so sorry that you ran into a financial shock. I am surprised,though, to hear it attributed to the new Health Care Law. I can remember back when I was in my 40s that neighbors, friends, and family, recognizing that Medicaid was a needs based service, advised our parents to dissipate their estates sufficient years ahead of when they might need care so they would qualify as needy. Some people built it right into their financial plan, others (like my father) refused to do it for reasons of honesty or pride or both. I seem also to remember that at one point in past years there was an attempt to hold family members financially responsible — out of recognition that people were circumventing the system that way. I don’t believe the effort was successful at the time. Anyway, if I understood what you said here, it is not new to require patients to use their own funds.

    On the other hand, I have had relatives who received superb care from Medicare — increasingly good over the past years — with the intention of helping them to remain in their own homes. In my brother’s case, for example, among other things, they installed railings on the walls to facilitate his walking from room to room. (No, he didn’t have Parkinson’s. His problem was a series of strokes.) Maybe that has changed. He died back in 1998.

    I hope you have accountant or lawyer friends out there who can comment on the accuracy of what I’ve said.

    And please, keep trying .. You made the right decisions — for both you and Al.


    • it is all due to the brand new laws obama placed into the health care. i knew that they would use Al’s funds, that was not a shock. the price to place him out of a trust and into medcaid was a huge shock, and knowing the new law that someone has to pay back half,AFTER he dies is rediculous!!! just plain rediculous, and it also states these faces in the new medicaid laws under trusts


    • i hope this new girl works out but i will have to ask her if she can provide more hours after i find out the that she is compatible…………….the laws are crazy, and as new ones are passed, they offer less and less for us who are out of the government


  3. Terry, My prayers continue for you and Al and for the need of a new caregiver. I thank Him for leading you each step of the way and giving you the grace to make each of these difficult decisions. Keep trusting in the Lord. He is with you. Lord bless.


    • thank you. i don’t know what is going on with these caregivers. they want the jobs and then they don’t stay. hopefully i can find one and offer enough hours for them to stay


  4. the thing with medicaid is hard to understand. i worked with this program for a short time here in georgia while waiting to start another job. medicaid out here has always required the patient use up their own reserve to pay for their care. medicaid is not a program we pay for in all those deductions from our check while working. it is a program for people who do not have the funds to pay for care. out here you have a home that is protected and called your homested. one car is also allowed. other than that medcare pays a percentage and the rest is left for medicaid to cover.
    each state has it’s own rules but certain guidelines are federal. it has been around for atleast 40 yrs that i know of as i looked into it for my grandmother all those years ago in arkansas.

    if Al spent any time in the military he is entitled to use the V.A. nursing home. if you can afford more caregivers that is wonderful for the now and you can have time to think about how you want to handle things that are still coming.

    still this does not make you feel any better and for that i am so sorry. will continue to send best wishes to you and al.

    hoping you find peace of mind, body and spirit.


    • Al was never in the military as he is mentally challenged. the new obama health care is what is hurting us. i can not afford to pay back half to the state, and these are the new rules for most trusts accounts now


      • these were the rules when i was working in this program under the Bush administration. with all the budget cuts and programs just losing funding it is getting worse. sorry this just makes things harder for you. fortunately you can hire more help.


      • yes, we are lucky for this………………i wish we could turn back time to when things were more simple and money wasn’t the priority, people and family were


  5. Here in the UK we do not have health insurance the way you guys do but it is common for the state to only pay once all the persons assets have been used up there are ways round it like selling the house at cut rate to the children or deeding it to them to preserve their inheritance. a good accountant might be able to help with those things but for now while he is in your home have you considered either the church as a source for finding a caregiver or even your local hospital, many have volunteers who visit people there maybe someone there who a few extra dollars would help out and if the already volunteer it says loads about the fact they are caring


    • it isn’t the fact that they would take the rest of his trust, it is the fact that with the new health care reform, someone has to pay half of what medicaid pays out while he is or was in a nursing home once he passes. this is on top of the trust already being gone. it sucks


  6. Terry, I know the effects this new healthcare is going to have and is having on all those with major illness, including chronic illnesses like what I have. My heart is with you and so are my prayers. As a former caregiver, and as one with illness, I know that this is hard on you. Hugs coming your way!


    • Say Terry, You’ve raised an important issue here. In relation to “forhisgloryandpraise,” it is my understanding that what you are dealing with is the current situation without oversight of insurance company practices. The new law as it applies to chronic conditions won’t even go into effect until 2014 and the intention is that things should improve when it does. In googling this, I found one person with a chronic condition who wrote about its potential effects. You might find it interesting. That certainly is my hope, and the hope of all who care about the health of all God’s children.


      • you are right, there are certain points that will not go into effect until 2014, but the codes pointed out to my and checked on google by attorney, this part has already passed and is in effect. i don’t see how anyone can expect someone to pay half of what medicaid paid to the state for his care. with Parkinson’s being such a long term illness, this is the problem, if it was cancer, then nursing home care is shorter stays generally. i will read your link


      • i read your article and it is for Mass. Here in Indiana the rules are different. Medicaid is different in each state according to the legal terms of a will and trust. This is where the issue lies, a will and trust. For Al’s the Indiana state medicaid requires fifty percent payback


  7. The Lord knows exactly the right person for this job and I pray that He will bring her to you very soon. I pray that you and Al will both feel the presence of the Lord surrounding you and holding you up. He is your shield and the glory and the lifter of your heads and He hears you when you cry out to Him (Psalm 3).


    • this is going to be my reading for tonight, thank you. also thank you for the prayers. i m hoping the new caregiver i hired will work out, and then maybe she could extend her hours………this is my prayer. i still have the same caregiver for showers, but the respite caregiver is the one we struggle to find that will stay………..thank you so much


  8. My prayers are with you and Al. We just went through this with my aunt, my poor cousin was hit the same as you with all of these decisions. I am sorry it came down to you not being able to place Al in a facility. Unfortunately our state mandates that all assets including the home or they put a lean on 50% of the home if a spouse or co-owner is living there. We have no homestead act to protect our seniors. So we have been where you are a few times – making hard decisions for the best care for our families with the minimum resources. I may not be able to offer any suggestions, but I can and will offer prayer – I lift you and Al up to God for His strength and His comfort and to bless you with any help you need to care for Al.


  9. In Canada when my mother was in a nursing home..the government paid a certain amount for the care but then depending on how expensive a home you choose and if you want a semi-private or private room my mother had to pay the difference. It doesn’t sound the same as what you’re saying for sure. I will certainly pray for one care giver to stay the course…Diane


    • not quite the same, but here also, if they have their own money, they can pay the difference also. the problem for Al is Parkinson’s has no ending date. he could live in a nursing home for years……..would be easier if it was like a cancer thing, where the ending is predictable, know what i mean???


      • I did…working on getting some photos together for a blog post actually 🙂 Went to the Cubs game with my parents and kiddos Saturday. It was a great time. Made some good memories, thank you for asking. Loving the nice cool evening weather right now. We got soaked here yesterday which means you may have gotten some rain too? I think it rained more in two hours than it did the past four months, haha. Wild stuff outside yesterday afternoon!


      • it did rain here quite a bit and rained today also, but had the air conditioning on today also, a big muggy and Al can’t handle heat anymore. i am so glad you had a good weekend. we did pretty much considering……..i am so glad we have crossed paths. you are so easy to talk to Brian!


  10. Oh, sweetie, I do pray that you will find a dedicated caregiver who will truly care about Al. Prayers that you will find this angel soon.


  11. I’m so glad you are getting some help. If I read correctly, she is to start today. I hope all goes well and you can experience a little rest as well. It might be a nice change for Al, to see a new, dependable face. I concur with your findings concerning Medicare/Medicaid. My close friend and cousin died recently from complications of Muscular Dystrophy and in the end had to be placed. You have to be rid of every possible asset for Medicaid to help at all, even though Medicare foots part of the bill.

    Hope your day goes well!!


    • yes, and you want to know something?? i am not even ready for her and she will be here in an hour. i am always enjoying chatting with you and all of my friends on here, that i find it hard to tear myself away from the computer. isn’t that awful? but i better get off of here and get ready………….


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