Saturday, April 30

I don't even know how to explain all the Vet Admin stuff and the Medicare stuff and the Area Agency on Aging stuff in such a way that it makes sense, because it doesn't.  Just a quick recap.  We presently have a Home Health Aid coming twice a week that is paid for by Medicare.  Medicare will pay for 60 days and then will only continue if there is a downhill change in the patient.  This is determined by what I report to the agency who in turn keeps these records.    (When the RN came out I learned that I should have been telling them about the night time episodes, every fall and everything else that is not normal.)  OK.  I can do that.

The RN visit this past week was not to evaluate Cowboy, it was to evaluate their Aid.  We like her.  She does a good job.   In two weeks the RN will be back to evaluate Cowboy.

I pay a private agency for Marsha to come out every Wednesday so I can get out.   I pay a cleaning service to come once a month to do the floors, fans, window blinds, etc.  things I have difficulty doing.

We were told by the VA recently that we have reached the top of the waiting list for services.  If we don't tap into the service NOW we will be dropped from list and will have to start over; HOWEVER, where they used to provide respite, light housekeeping as well as Home Health (which is bathing, shaving, etc) now all they can provide is the Home Health service.   One has to suspect this is the result of budget cutbacks and the health care mess.   Then there is the matter that if the VA provides services then the Area Agency on Aging will not.  If we are able to stay on the Medicare plan the Area Agency on Aging can provide respite but only for 8 weeks.

OK.  Two baths a week is not enough.  Four is probably too many.  I have to stay with just the two if I want to ask the Aging Agency for respite care.  Or Cowboy can have 4 baths a week (two from the service and two more from the VA)  and I can continue to pay for respite care. This means at some point the Medicare help may stop and we will be using only the VA and it might be more than twice a week.  I don't think I asked that question.   And of course, since there are 3 agencies involved in all this any way I go we end up with an endless stream of different people providing the services.    AAHHGGG!!  Are you confused yet?
There are overlaps, gaps, rules that don't make sense and a very large amount of bureaucratic nonsense with all of this.  I am sure it is all there to prevent abuse but what it does is leave persons who do qualify feeling abused.

I really don't like the idea of Cowboy or me, for that matter, having to deal with a gazillion different personalities and constant change.

The bottom line is that it is still not sorted out but we are getting there.  Have to make decision for VA by Tuesday, May 3.  Have to make decision for Aging Agency by 17th when they are due to come and do an evaluation.   One good thing is I will know at that point if Medicare will or will not continue.

Cowboy is fine today.  We went to the Dulcimer Jam this morning.  He was ready to after about an hour and 20 minutes but it went OK.  He is taking a nap now.

Friday, April 29

Today was the wedding day for Will and Kate and it just dominated everything.  I did watch some of the coverage.

A couple of nights ago I got up to go to the bathroom.  It was about 3AM.  When I got back to the bed Cowboy was gone.  I searched and found him in the garage in his undershorts.  I asked him what he was doing.  He said was getting the garbage out.  Back to bed we went.

Cowboy ate a good breakfast but didn't want lunch.  I talked him into a cup of yogurt.  At dinner he ate a little bit.

This morning we took the dog to the groomer and got Cowboy a haircut.  The housekeeping service came at noon.  So now the dog is clean, the house is clean and Cowboy is clean.  Maybe I should take a shower?  (just kidding).

Thursday, April 28

Tuesday night we went down to the local cafe and sat outside.  One of my band members is in another band and he wanted us to come see them.  Mostly country and western songs.  We had hamburgers and some of the group had drinks.  Cowboy had water.  It was a nice evening.  Everyone is so gracious to him and the Dr. has told me that social activities are a good thing.  The fiddle player came up to Cowboy after and tried to engage him in conversation about his hat and boots.  Cowboy just said "yes".  Then he asked him if he played the fiddle.  I jumped in and explained that Cowboy used to play the guitar and that I played the fiddle.  He then said he thought Cowboy did because he kept staring at him while he was playing.  I had not noticed and can't say why he did that. 

Yesterday, Wednesday, one of my friends and I headed to the outlet mall.  Bought a few items and we had lunch at Mimi's.  Stopped by the grocery store on the way home.  It was a really nice day.  Cowboy seems quite comfortable with Marsha but she couldn't get him to eat his lunch.  Then she tried some watermelon and he wouldn't eat that either.  I had some at breakfast this morning and it is perfectly good watermelon.  Cowboy had said it wasn't sweet enough.  Maybe we should have sprinkled some sweetener on it?

Gena is here and Cowboy is getting his bath and shave.  The RN was supposed to come this morning to do the evaluation to determine if they could continue services.  She called and said it would be later today or tomorrow before she got by.

In the morning we are taking the dog to the groomer and getting Cowboy a haircut while we wait on her.  Then the cleaning folks are doing some cleaning for me at noon.  All these calendar changes makes things a bit challenging to juggle sometimes but so far so good.

I found out Tuesday when Gena came that Cowboy had some bruises and turns out he had fallen when getting out of his chair a few days ago and had not told me.  Don't know exactly when it happened.

Tuesday, April 26

We had a nice Easter.  We went to a neighbors and had Easter dinner with 3 couples from our neighborhood.  Charming people, good food and good conversation.  Cowboy was very quiet but he ate well and seemed to enjoy himself.

Yesterday (Monday) we were supposed to have Gena come and then the housekeeper and then we had an appointment at the VA for a hearing test at 4PM.  Gena called and cancelled and the housekeeper called and cancelled.   That didn't turn out to be a bad thing.  Our dog was in pain and we couldn't identify it so we needed to take her to the vet so everything worked out well.   Turns out Sheba had an impacted anal gland.  At least it was easy to resolve.  In the afternoon we went back into the city for the hearing test.  They wouldn't let me in with him so don't really know if he was able to do things properly. 

This morning Gena is here and Cowboy is getting a bath and shave.  This afternoon my band is coming over to jam.

Cowboy has his times when he seems out of it and I have my moments when I start to worry about things but mostly we are both OK.  It is really hard to tell how much he absorbs from TV or magazines or the paper but he looks at them and seems to enjoy doing so.  Things are going along pretty well.

Saturday, April 23

I woke up about 1:30 this morning and Cowboy was in his closet getting dressed.  He had his pants and shirt on but not his boots.  I told him it was the middle of the night and heneeded to come back to bed so he took his clothes back off and got into bed. 

Cowboy ate a good breakfast and then napped a bit and then watched TV and ate about half his lunch and is napping again.  He seems kind of in a fog today.  I leaned over and kissed him this morning after breakfast and he opened his eyes and smiled at me. 

I have managed to get some chores and the laundry done so has been a working day for me. 

Thursday, April 21

Marsha was coming yesterday so at breakfast I reminded Cowboy "You remember Marsha is coming today?"  His response was "Who is Marsha".  I told him about her coming every week and I had some errands, etc.  He just looked at me with this blank look and didn't say anything else.  When she arrived he seemed to know her.  Everything was OK.

I took the day to shop at the base.  I hit two PX's, the Class VI (liquor store) and the Commissary and was actually about 10 minutes late getting home.  Exhausting day but am pretty well stocked with all our household goods and non-perishables.  I even had time to buy some birthday cards and magazines, etc.  and go to GNC for Cowboy's Vitamin B-12 and my calcium.

Today Gena was coming again and I really wanted to go to book club.  When she called and said she was on the way I went down the street to the meeting and left Cowboy in his robe in front of the TV.  I knew she would be there within 10 or 15 minutes.  When they were done Cowboy called me.  He does seem to be able to use this new simple telephone.  All he has to do is pick up the receiver and hit one button.

Tuesday, April 19

Gena came yesterday and Cowboy got a bath and shave.  She picks out his clothes and he always looks nice when they are done.  I needed to get some things from Home Depot so I took Cowboy and did a short shopping trip.  When we got to the store he sat down in an office chair and then didn't seem interested in getting up when it was time to leave.  That never happened before.

Last night after he had gone to sleep I was reading and he seemed to wake up and was looking around under the covers and on the floor and then he picks up the dog like she was an article rather than a live animal and then set her back down.  (you have to wonder what our pooch thinks about all this odd behavior).  I asked him what he was looking for and he said a small magazine.  It didn't exist and I just said "there is no magazine" and he shrugged and went back to sleep.  Then during the night he kept talking in his sleep.  Couldn't tell what he was saying.

I had to get some papers copied this morning to send to the VA so I rehearsed how to call me on my cell with Cowboy and then left for about 20 minutes.  I worried every minute I was gone but he was fine.  He was watching "The Price is Right".

My band is coming over this afternoon so am looking forward to that.

Sunday, April 17

I always love Sundays.  I just try to take it easy, read the paper.  Today I took a long walk with the dog.  Beautiful day out. 

Cowboy is doing something new and different starting yesterday.  He turns the TV up to the point it blasts you out of the room.  I asked him if his hearing aids are working and even made sure the batteries were recently changed and it has made no difference.  Every time I turn around he has turned it up extraordinarily loud.  Don't know what that is about.  I really don't think it is his hearing.    Can't even stand to be in the room.  Have gone over and turned it down several times.  He just gives me this unhappy look and next thing I know he has turned it back up.

I fixed a nice steak and sour cream potatoes tonight hoping he would enjoy a meal he hardly ever gets.  He didn't eat but about 3 bites, shook his head and got up from the table.  I just fixed him a milkshake and he is drinking it.

Saturday, April 16

Yesterday was a real challenge.  Our appointment was at 12:30 but an hour away and with traffic on the interstate I decided to allow an hour and a half.  Needed every bit of it.  Traffic crawled nearly the whole distance.  We got there with a few minutes to spare and sat down in the waiting room and then a security guard came and told us they were going to have a fire drill and we might want to get a head start.

That meant 3 flights of stairs down, across a parking lot to a designated spot.  I worried every step down the stairs that Cowboy would fall.  But what happened was after we got to the parking lot, he stepped over some railroad ties to a grassy area and down he went.   Grass, dirt, a skinned arm but no real damage.  We then had to wait as others came pouring out of the building.

Needless to say our appointment ran late.  We spent an hour with a lady Dr.  talking about PTSD, rage, sleeping problems, his hallucinations and then a battery of tests on his memory and cognitive abilities.  I joked with Cowboy as we left that he must feel like a "lab rat" with which he heartily agreed.

We then crawled through traffic back home, exhausted.

This morning I work up to find the Cowboy already up.  He had warmed some coffee and was dressed and was watching cartoons on TV.  Now there is something I didn't think I would ever see!  Maybe he just couldn't figure out how to change the channel.    It felt really good to sleep a bit longer. 

Thursday, April 14

The days get away from me.  Tuesday was a busy day.  Took all morning to go to the VA and talk to a Dr. and get an evaluation done.  Have no idea what will become of it.

Jam in the afternoon. (My guilty pleasure)

Wednesday was my day out and I had a list of errands a mile long.  Needed a haircut, picked up cleaning, got some greeting cards,groceries, etc.  Was nice to get out.

Cowboy is doing very well with Marsha coming in.  They get along great and she is a big help.  She does the towels and sheets for me, dusts and picks up.  Sometimes I feel a  little guilty as I can do those things myself but it really does help and makes me feel less like I must do everything alone.  She fixes Cowboy some lunch and keeps an eye on him so he can go out and sit on the patio.

Today Gena came and Cowboy got a bath, shaved and he picked out a nice red shirt to wear.  The nurse came too and his readings are all good. 

Then we went and got him a haircut and took the car and got it washed.  Being out gave me an excuse to take him to a chinese restaurant and he ate really well.  His weight is holding steady.  I just have to think about what he is mostly likely to eat rather than thinking about what is best for him.  I have discovered that I can take a banana or a handful of blueberries, a carton of Ensure and 3 scoops of ice cream and make a milkshake and he will eat it all.  I bought some sugar free ice cream yesterday so I wouldn't feel quite so guilty.

I often feel scattered and less productive than I would like to be but all the essentials are getting done and as far as I know nothing is falling in the cracks.  My neighbors are wonderful.  One of my lovely friends brought me 2 of the most beautiful white roses Monday after reading my blog.  It is great to have such caring people around.  Marsha brought me a porcelain violin she found in an antiquie shop.  Looks like something you would see if the 50's.  Such a thoughtful gift as I have a collection of violin trinkets.  and my sister sent me an encouraging email.  This blog thing is wonderful.  Every now and then I get an email from someone who is following it, friends and family.

Tomorrow we go back into the city for a mental health evaluation with the VA.  Don't know what that is about.  Should be interesting.

Monday, April 11

For many years Cowboy was always up an hour or two before me and he had his paper and coffee and usually fixed his own breakfast.  A rare occasional weekend would find us still in bed and we could snuggle and lay together.  Now that he is usually not up before me I scoot over and lay next to him and we snuggle and share a few moments of closeness.  I think he does get a lot from it and I know I do.  It makes some of this a bit more bearable to maintain that connection.

Today I am feeling a little down.  Don't know why.  Sunday was a nice quiet day.  We sat on the patio and enjoyed the sun.  We read the Sunday paper and we watched the Masters on TV.  I have a few household chores to do.

Gena is here giving him a bath, shaving him, putting lotion and cream on his dry skin.  This is a fellow that used to have legs like tree trunks because he ran several miles most days.  Now they are so thin.  All of him is so thin.  But he is still a good looking man for 81.  I miss his beautiful hair.  When we met he had this full head of wavy hair that was dark with just a touch of grey.  Now he has very little hair and we have it cut short to facilitate keeping him tidy.

Tomorrow will be a busy day.  We have an appointment at 9:30 in the morning for an evaluation at the VA.  It is about 30 miles through the city in heavy traffic.  Tomorrow afternoon my band is coming over to jam.

Saturday, April 9

Cowboy had physical therapy Thursday and Friday and that is it.  He does really well if he uses his cane and wears his athletic shoes and the therapist really encouraged him to do that. 

Yesterday I learned that we can get a "Durable Power of Attorney" done at the army base so we headed over there and took care of that.  This document is required for me to sign anything for the VA, a nursing home and to handle financial transactions.  We know there will be a point where Cowboy will not even be able to sign his name and when he certainly would not know what he was signing.  If you wait until then it takes getting a lawyer and going to court to have them declared unable to handle their affairs.  This is much better in every way.

The VA called late yesterday and we now have three appointments for evaluations to see if a change can be made to his disability rating.  The process has begun.  I don't know how someone who was working could handle all the things involved in this journey, even if they had day care.  I have read an article or two about caregivers and that it is a full time job.  They are right.

This morning after breakfast we went to the store for milk and water softener salt.  By the time we were done he was tired.  He is sleeping now.

I am beginning to feel a little more in control.  Various things are moving along and I am gathering all the information needed to make the right decisions for him.  Still have to visit a couple of dementia care facilities for comparison.   There are three in our city but we know they will cost more than the insurance will cover.  On the other hand it would be a lot closer and may be better.  Still figuring that out.

Wednesday, April 6

Yesterday morning about 4AM I wake up to this rustling sound.  When I am fully awake I realize Cowboy is laying bed holding up the bedside lamp with both hands.  It is lead crystal and rather heavy.  I asked what he was doing and he replied "I have got to get it !".  Didn't know if his plan was to throw the lamp or swing it.  I got out of bed as quickly as I could and went around and took it from him.  He did not resist in any way.  I talked to him a little bit and he became calm and went back to sleep.  It concerned me because he could have hurt himself or me.

Good day yesterday.  We had a leisurely morning and then my band came over in the PM and we played for a while.  Cowboy seems to enjoy it.

This morning about 4:30 I woke up when Cowboy started shouting.  I couldn 't tell what he was saying except when he said "Sheba, get out of the way !".  Sheba is our dog.  Then he went back to sleep.

A friend and I went to check out a state VA home this morning while Marsha watched Cowboy.  It was quite clean and very attractive and it is less money than most nursing facilities so is definitely an option.  There is about a 6 month wait on a list before you can get in.  Will have to first decide if this is the best option and then figure out the timing for getting on the list.

We went to lunch and then ran a couple of errands.  Still had an hour before needed to be home so went to my friends and just hung out and visited.  Marsha reported that Cowboy ate most of his lunch and spent a lot of time sitting on the patio.  Nice day.  Gotta go.  Time to fix dinner.

Monday, April 4

Today is Cowboy's 81st birthday.  Over the weekend we had his daughter and grandaughter visit.  We went out to eat yesterday and he ate every bite !  This morning he ate all his breakfast but hardly any lunch.  Things are looking a bit better on that front.  We will see......

I got some really good news late Friday afternoon.  The VA social worker called and took all the information from me to put Cowboy on a waiting list for home care that will start in about 2 to 3 months.  It will  mean I will not have to hire someone to have some respite time and it also means Cowboy will have more help with his "activities of daily living".  The best part is it will last as long as necessary and may allow us to keep him at home longer.

I had made an appointment with the Area Council on Aging and they were due to come out this morning.  Their services are similar but only last 6 to 8 weeks.  It doesn't make sense to change him two more times to different people so cancelled the appointment.

Friday the physical therapist came and he seems to be improving as far as his walking and balance.  He still is unsteady a lot of the time.  About a half hour after she left he was putting his cane away in the closet and fell and got a bump on his head.  He didn't know how it happened.  No headache, no problems.  A lot of the purpose of the physical therapy is to get him where he doesn't topple over.  Guess we are not there yet.

It is 4:15 and Cowboy is napping.  He had physical therapy this afternoon and it wore him out.

Friday, April 1

This is the longest I have gone without posting.  Sorry about that.  Has been quite a week.  Monday, cleaned house and then physical therapist came in the afternoon.  Tuesday morning took the dog to the groomer and then took Cowboy to IHOP.  He loves IHOP and breakfast is his best meal.  That afternoon the band came over and we played some music.  I love doing it but it takes a lot out of me.  My bandmates are wonderful to help out.

Wednesday Marsha came and three of my neighbors drovewith me all the way to the big city and had lunch at PF Changs, did a little shopping (which consisted mostly of trying something on and deciding I looked like a sack of potatoes in it).  We were going to hit Whole Foods but couldn't find it and then ran out of time so headed home and grabbed a few things at the local grocery.  Actually we pretty much stayed lost from the time we left home but it did generate a lot of laughs.  While we were gone, without my knowing ahead of time, the Home Health Care folks came.  Didn't know ahead of time.  She wanted to bathe him and he said he had already had a bath (he hadn't) but he did let here shave him.  Supposedly she is coming today but haven't heard from her yet. 

Yesterday I took Cowboy with me and we went to the local church and played for the day care folks. Thi is the same place that I took him for a couple of weeks and then he wouldn't go back.  He did OK.  He sat behind the group and watched.  It worked out OK.   Then, being a glutton for punishment, I had Marsha come and went and played again in the afternoon at a nursing home.  Since I was out anyway I took the time to go talk to my financial advisor.  I am finding things are getting a bit complicated.  Although we have long term care insurance the processes involved in getting it approved and then getting reimbursed leaves you with a lead time to deal with that could be as much as 3 months.  Need more assets in a liquid state to deal with what is coming.

This morning Cowboy did something unusual.  We had waffles for breakfast and he emptied the syrup bottle on his waffle and then threw  it on the floor (the bottle, not the waffle).  It reminded me of an occasion when we had honey on the table for our rolls and he put it on his pork chop.  There have been several situations like that and not all are recorded here.  He just does these strange things from time to time.

Today I am tidying up and getting the guest room bed made, etc.  Cowboy's daughter and grandaughter will be here late this afternoon.  They will be here until Monday.  Looking forward to seeing them.