Another First Day


First day of anything is usually a little chaotic. It is the same in our case too. I got up at 6:45 this morning and started the coffee pot. I swore I was going to have one cup of coffee during this busy bee time or I would go nuts.

I fed Mr. Rhino who managed to sleep either on top of me or snuggled up beside me all night. Poor baby, he thinks I don’t notice that he is here. I understand, I have been ignoring him some what. Less petting moments, so he is making sure I know he still has needs. Hey Rhino, what about mommy’s needs? Oh alright, you say mommies come last, I get it. Just like with mommy and daddy, we come last.

I cleaned his cat box, then proceeded to get all of Al‘s supplies ready. Shaver, hand towel, wash cloth, baby powder, baby oil, clean clothes, shoes and socks; check, got it. Oh wait, what about the brief and liner silly? Do you want him to go briefless? Check; got it.

Alrighty then, coffee in one hand and turning the TV news on so he can be entertained while sis is cleaning him up. He was awake when I entered his room. I just don’t know how he does it. His head isn’t on the pillow, it is hanging in mid-air. Like a magic trick, look ma, no hands. But, his head will not lie flat without a little help from my hands.

So we started the get-up process. This takes about an hour. We get out to the kitchen and I go back and grab the soiled bed clothing and make a mad dash for the washing machine. Popped them in and listened to the music of washing.

Al wanted Pop Tarts for breakfast, so he made that easy for me. The only thing I had to que him on was bite sizes and waiting until he swallowed each bite. I do declare he would put as much of any food in his mouth and just keep stuffing. He didn’t used to be like that but he is now. He took his medications and then when finished I washed his hands and face and ta-da, he was ready to go with six minutes to spare.

I raced around and got his lunch box ready. I sat him at the front door and asked him if he could be my helper and watch for the bus. He didn’t answer and his head was hanging too low so I know he couldn’t, but maybe it made him feel worthy by my asking, I am hoping.

The bus came and loaded him up and he was off. So was I, off to the same place but different location. I had a meeting with the people who were going to be watching over him through the day times. I had not had the time to eat breakfast myself nor did I get to take my medications.

The meeting lasted two hours and I was famished. The meeting was over at 10:45 and I had to meet the Hospice nurse at 11. I just had to take my medicine. I darted out to my car like a rabbit stealing a carrot. I raced down to the Dairy Queen and grabbed one of those five dollar value meals. Nothing like having a hamburger for breakfast/lunch. Racing back to the company I took my food inside and sank into one of the leather seats in the waiting room.

The receptionist looked at me a little strange, but I explained what was going on and I was just now catching up on my meal between meetings. She sort of snickered but oh well, who cares, I knew what I was doing.

The nurse arrived so I continued eating during our meeting. She met Al for the first time and he was having chest pains at number 7 on our scale. We gave him his pain medication and the nurse determined that he had had a BM earlier and the pushing mechanism had set off those nasty internal tremors. We stood and watched his fingernails turn light gray to dark gray.

Finally the pill kicked in and we both sighed a relief. We went on to continue our business and I did learn that as of right now I am not going to get the help in the mornings as I was promised. That broke my heart because Al is difficult to handle alone.

It seems that to get the help at home and have Medicaid pay for it, even through the waiver, the primary caregiver has to be working outside the home. What the heck? I don’t work so I can care for him. I don’t get it. So I called the Waiver man and he is working on how to rectify it if he can.

The Hospice aides will be here three times a week to give Al his showers, so if worse comes to worse, I will just have to do what I have to do. That gives me three days for his showers but doesn’t help at all with getting him up in the mornings.

I came home finally about 2 and I just wanted to lay down and sleep forever, but I had calls to make. Getting this whole program to put in place is not that easy. I don’t have a permanent case worker yet, so that is being worked on. The case worker will do the phone call crap instead of me once he/she is in place.

I looked at the time and it was 3:30. I had one hour before Al came home. I should be folding the clothes out of the dryer or doing something but I couldn’t. Rhino came up and we both cuddled on the couch and I slept until the phone rang not once but twice.

A friend called and then the Spirit man called. Whoa baby that woke me up, spirit man? What has this world came to? His real name in my book is minister, but his title in today’s world is spiritual man.

Alright I get it, new modern world thing. He wants to come at 4:30 to meet with me and Al. I tell him yes, and was thinking now leave me alone, I am tired. We hung up and I fell instantly asleep until the door bell rang and going to the door it was the spirit man in full beard and dockers. Is this Jesus coming to take me home in dockers? Oh my gosh, just let the man in. I force my eyes open and try to look like he didn’t wake me out of a dead sleep. He takes a seat and starts jabbering then Al is delivered home. The two of them meet, Al cries because they are talking about God and this topic always makes Al cry because he wants to go to heaven so bad.

Letting the man out the door Al doesn’t want any supper. So it is ice-cream mixed with Ensure again. A change of briefs, out of clothes and he is now napping. When he wakes up I will offer him some solid food and hopefully he eats something for me.

The house is quiet except for the Escape music on Satellite. I look at my computer, and think well hello there my friend. I pull out my chair and decide to visit with my friends.

32 thoughts on “Another First Day

    • I am not understanding this respite care. I heard about it today for the first time. Something about me getting a break but maybe I am having to find the respite caregiver???

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      • In my experience Hospice will work two different ways with you for respite care. Although you do not work away from the house, you are responsible for your brother 24/7. Hospice knows he would have full time care if you were not there. If you have someone capable and that you trust and your brother is comfortable with, then you should be able to select who you want in your home. However, if you don’t know of a qualified individual, then Hospice picks someone for you. There is no charge to you. They (Hospice) needs to factor in time for you not only to have time for you to have some quality time to recharge your own batteries but to do errands such as go to the grocery store, put gas in your vehicle, go to your own appointments, etc. Be assertive with them. It is there job to help you and they are being paid to do so. Caregivers like the two of us burn out fast if we don’t have respite providers. We think we can be everything to those we love, but guess what? We can’t. It was a really hard lesson for me to learn.

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      • I will try to look into this more. They keep telling me yesterday to try to find a caregiver and they will hire them and pay them to help in the mornings. I don’t really know of any and even placed a notice on my Facebook page,but nothing so far

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  1. on the bright side Al is home where you wanted him. it will take a bit of time and cooperation from all involved but i have faith things will get easier. of course the emotional strain will not be that easy to put right.

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  2. Oh my gosh Terry please look after yourself!! Respite care is where someone comes in and cares for Al’s needs and gives you a break to either get out of the house or just have a break. I used to do this. I may be different where you are but a care aid usually does this.

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    • he seemed content. I wasn’t happy with the room because there were more challenged clients than he there, but he liked it so I kept quiet. He came home tired, but he did good

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  3. What great logic that is for them to think that just because you are THERE in the mornings means you are ABLE. Sometimes the way these services think baffles me. I do hope you get some sort of decision from them to make it so you get the morning help, Terry — you will be able to enjoy Al so much more. Continuing prayers and hugs.

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  4. Great advice from others on here and what a post. I think I need a Valium as I was right there with you. I am glad Al is home–I know this was what you wanted, but I worry about you not getting your meds on time (I’m sick here!), not eating, and not sleeping. I so wish you had more help with Al, just like I wish I had any for myself! I’ve heard of respite care and hope that turns out. Oh, Medicare is such a nightmare (I’m on SSDI)–I can’t even fathom dealing with Medicaid. I own my 7-yr-old car outright so I don’t qualify–craziest rules ever (you can get both if you live on the street it appears)! I just remember my great-grandmother had to liquidate everything in order to get Medicaid so my great-grandfather could get into a nursing home in the early ’80s. She was a proud woman (and immigrant who came to the US alone) and having to go into the welfare office about killed her. I was young, but know the stories. I can feel how overwhelmed you are–I’m the same as a sick person trying to coordinate my own things. This country has to find a better way. A fellow blogger said that when the Boomers really get up in age and start to get sick en masse, things will change, since that’s the generation that changed everything. Well, I hope some relief comes ASAP for you…

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    • it seems very unfair to me that while we are going poor the natural way by many medical problems, there are healthy people living on welfare, food stamps and utilizing the entire system. To have to be disqualified by owning a car makes no sense to me. Do they want you to have a loan that you can’t pay? Or how about no way to get to your grocery store or appointments. The system is entirely out of balance

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      • Amen to that! The system would like me dead so they can stop sending me SSDI, even though I worked for 20 yrs (not all full-time due to college, but I worked since age 14). The car thing is a joke since I did the right thing by paying off my loan. It will be close to 120 F this weekend in the SW. Gee, how long would I last after dragging myself to the bus stop w/my Ehlers-Danlos and then looking for a bus I can’t see due to my corneal disease! Almost laughable, but not. Oh, don’t get me started on the mothers with 6 kids in front of me at Wal-Mart paying for junk food w/EBT cards. Argh!

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      • that is a whole other topic, the mother with six kids. Nothing urks me more than seeing the system abused, and then folks that really need it have to prove themselves unhealthy!

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  5. Terry, I love how you have started to describe your days with Al now … like a dairy. I don’t understand this with being the primary caretaker and working outside home, how can anyone be primary caretaker when being away the whole day .. for work??? This with your caretaking over there, is getting more and more confused by the day for me.
    Please, don’t forget yourself in all this now – don’t let the caretaking eat you up completely, you have to be good to yourself too. My thoughts are with you both.

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    • thanks Vivi, it is strange isn’t it, how the system works. He is my full time job. It helps a lot that he goes to day program. it gives me that break. I can get groceries, run errands etc.

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  6. Pingback: My Lucky Nap | terry1954

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