Having problems coping

Wayne is driving me nuts these days. I wonder if it is his alzheimer's or is he just being the old obstinate person he always was, only this seems worse. He only LISTENS to the TV, has his back to the TV most of the time, and when I ask him what he is watching, he'll point to the window or something. I have been trying to get him to wear those glasses but he just refuses to. I'm just worried about him but he thinks I'm being a pest. Guess I should mention that he has cataracts in both eyes and the doctor said it would be dangerous for him to have surgery (he needs) because with his parkinsons he could twitch and it could cause the needle/knife to move and he could end up blind, so we opted out of that for now.  

I find catsup and mustard in the freezer. Yesterday I couldn't find the instructions to the bed rails (my son-in-law installed them yesterday) and wondered if he threw them away. It could be in my car b/c I may have taken them when I had to go to Lowes to pick up a nut driver for my drill. I remember what the instructions say so maybe it will be ok. (update:  yes, everything went well with installing them thanks to my son-in-law Derek).  And my car is in the dealers for service.


Here are the bed rails Derek installed for me.  I ordered these because Wayne kept falling out of the bed.

I've been trying to get him to do things more for himself because I have "spoiled" him doing everything for him. It is helping a little but he is getting angry because I am not doing some things for him. I help when where he needs it (getting dressed, catherizing he can't do ever, and whatever else).  I have to get a handle on getting this house in shape (clean and everything put away). Once summer is done and no more gardening, I should be able to get on track with that.  Just seems once I sit down he is calling me for help with something. 

It is so hard trying to figure out if this is his "just being normal" or if it is the brain confused. I know when he is confused but when he says things that are mean, then that confuses me. I knew before when it was just him being him, blowing off hot tempered, then getting over it in a minute and leaving you angry and upset. But now I'm having trouble telling which is which and don't want to say something I shouldn't. KWIM? I know there is something very wrong with what looks like to be his staring in space. He listens to everything as I said, doesn't watch. Yesterday he went into the kitchen and I asked him what he was doing there and he said "trying to see the TV better" ...well, the TV is in the living room, not the kitchen.

AND... I don't know if this is because I have FRENCH background, but I am one of those kind of people who tends to get upset easy (I never thought I was in the past though)... things bother me, good or bad.  I get excited usually about good things but don't always show it.  I also seem to be easily upset.  I don't know if it comes from passion or what, but it is getting in my way of doing what I need to do to help my husband!  Before all this bad stuff happened to Wayne, if we disagreed about something, we just told each other.  Now, it seems, I have no way of expressing that.  Maybe none of that makes any sense.  It is sure confusing me also.  I think the problem lies in that I am so upset because my husband cannot remember something, or because he can't be the "partner" relationship we use to have, and I worry worry worry about him all the time.  I hardly take care of myself.  I know I need to change that but don't know how.

I'm just missing my loving husband, partner, partner-in-crime, so to speak.  

Oh, by the way, I found a wonderful group called "Forget Me Not" on facebook if any of you need a group, like I do.  
 

Happy Anniversary to my sweetheart of 44 years!

As I mentioned yesterday, Wayne and I were married 44 years ago.  We did not have a "wedding" but we were married in a church.  We decided rather quickly that we should be married, so Wayne flew from Florida.  Actually the problem was that he was transferred from Quonset Point, RI to Mayport, FL and we were then separated.  I wanted to fly to Florida but I told him that I wouldn't "live with him", against my principles.  So we decided to marry.

During the whole ceremony, we just laughed.  Something was tickling us I think.  I was wearing one of those empire mini dresses that made it look like I was pregnant, which I was not.  Even my boss thought I was pregnant because we made a quick decision to get married.  Our first child wasn't born until April 1973.  We were married July 1969.  The minister gave us the marriage vows that his daughter was having at her upcoming wedding.  We repeated after him.  Why we were laughing is just a nervous reaction I think.

My parents took us out to dinner that night.  We found a motel nearby for our honeymoon and then he had to return to Mayport, Florida a couple days later.  I followed two weeks later since I had to take care of business (my job for one).

While I was still in Rhode Island, Wayne found a place to live.  It was in a trailer park outside the naval base.  There wasn't navy housing for enlistees.  As it turned out, I didn't like this house b/c it had no screens on the windows, so we quickly found a new place to live.  It was a duplex trailer home, our first real home together.

Wayne had two 6 month cruises he went on while he was in the Navy, the second of which I was able to meet him in Athens, Greece!   The Navy offered flights to Navy wives, on a charter plane.  I was so excited to go!  Unfortunately, it was a "propeller" plane!  When we arrived in Greece, the plane was on fire!  There were all Navy wives and children on board.  We had a wonderful time in Greece.  This was our honeymoon that we never had!

We have been through many good times and bad times.  I have always said that our love held out through the most difficult of times, and I was right!

I love you Wayne!

Our New Craftmatic Bed Arrived Today!

I was anxious for this new bed because our old one must be over 20 years old and this one is an adjustable bed.  It also raises feet and head and massages too!  I know we will love this bed!  But as the men took out the old and brought in the new, put it together, I watched Wayne and he was very quiet and looked depressed.  Seems he didn't want this new bed, but I know he is going to love it.  I got the adjustable for him because of his swollen feet/ankles.  This way we can raise his feet up a little and it might help reduce the swelling!   I had to go buy some sheets b/c this is a King/two twin xl's side by side.  I got a sheet set, a king flat sheet, 2 new pillows, 2 mattress protectors and 2 mattress pads. I have two more sets of sheets ordered, so we'll be all set for a while!

One of the things I have noticed is that Wayne will talk about something and I don't understand anything he is saying.  I can hear him, but it doesn't make any sense to me and when I ask him to explain it, he doesn't really know how to.  Yesterday he told me he needed a t-shirt (he had one on) and then I realized he was asking for socks.

He helps me with what he can.  He will wash clothes and take the trash bag out of the trash can.

I started a Weight Watchers Diet ... it is going ok.  The first week I lost 6.6 lbs.  I know I won't follow it to the "T" but if I even just cut back and stay away from the "picking" and junk food, I will definitely lose.  I am determined (for now) to keep at it.

Tomorrow is our anniversary.  We will be married 44 years!  I met Wayne in Rhode Island (my home state).  There was a club I went to and all the military guys also went to it.  It was called The Girls City Club.  .  There was no alcohol there.  Just hot chocolate and punch or soda.  They had a band on the weekends.  I loved to dance.  He was in the U.S. Navy stationed in Quonset Point, RI.  At first I didn't want to date him, and he was sort of chasing me around because if I went in the ladies room, he would be waiting outside for me.    Finally, a friend of mine said "why don't you just date him" ... then we were married about a year later....  well, here we are 44 years later, 4 children later, and 10 grandchildren later.  If it wasn't for the love we have between us, I don't think either of us would have gotten through the last 3 years.



  

Parkinson's and movement

Good Morning!

The day after the 4th July!  We went to the movies yesterday to see White House Down.  It was a funny movie.  Anyway, we got free tickets because Wayne is a veteran!  Can't get better than that.  We enjoyed the movie but the weird thing is that it was funny when it was all about killing and taking the White House down.  I would give it 4stars at least but I heard it isn't getting good reviews.

I never really talked about Wayne's problem with the Parkinson's.  During the day, you can see his left arm shaking a lot (more than the right), but at night seems to be when it is its worse.  He jumps around in bed ...well, his whole body moves and sometimes he falls out of bed because of it.  He also seems to have violent dreams but he doesn't usually remember them.  Sometimes I will touch him or hug him and it calms him down.  I believe this is why the eye doctor was concerned about surgery on his eye because he can move easily without even realizing it.  There have been times when he almost hit me during his dream.  He doesn't realize he is doing this of course.  I usually am half awake and will calm him down in hopes that dream goes away.  If any of you have experienced similar things like this, I welcome your comments.

Have a good day!

Update on Wayne

Hello, it is Wednesday July 3rd Already!  Where does the time go?

Update:  Took Wayne to the VA for his usual anticoag blood work and a consultation on his eyes for possible cataract surgery.  Come to find out, the doctor said there are risks in having the surgery b/c of his condition (combination of alzheimer's, parkinson's (he's more worried about this I think b/c he moves) and other things like prostate etc.  He said if he moves on the table, it could cause injury to his eye and he could be worse off.  So Wayne asked for glasses.  If the glasses help, he probably won't have the surgery.  Hopefully they will help.

Also the issue of whether or not he can go on the other meds for the anticoag (instead of warfarin), the lady said he had to ask his Dr.  I was disappointed. We saw a different lady. The other lady said he could go on the new med but I think back then he was still seeing the VA Dr.   Now they show on record that he is seeing the DR. here locally, so guess we'll just wait till he sees him and ask about it.  The idea of this med (can't remember name right now) is that he wouldn't have to have his blood drawn every month or however often it is needed.

I was up/down all night long.  For some reason, he had to pee every 1/2 hour or something.  Anyway, it will be a tired day for me.

I'll check back with more ...

Good Morning!  It is the last day of June.  Boy, these months fly by!

I joined Weight Watchers ONLINE.  I am in desperate need of losing weight and would be wonderful if I could come off diabetes meds. 

The other day Wayne asked me for a pillow case.  What he wanted was socks. 

We took one of our grandsons to the movies yesterday to see Monsters University.  It was pretty good.  He liked it and that's what counts.  He is 9. He's a picture of him his last day of 3rd grade this year:

We are getting ready for church soon. 

more to come....

Hello, it is Saturday, the 22nd of June!  Yesterday was the first day of summer and don't we know it.  The temps are going up!  Very humid.

This morning Wayne is washing clothes!  Yes, he washes clothes.  I worry sometimes that he might forget the soap, but so far so good.  It is my job to fold and put away.

I think he is depressed but who wouldn't be with everything happening to him as it is.  He tends to sleep in his chair a lot.  He also sleeps during baseball games, something he loves.  Next time he sees the doctor, I'm going to bring that up. 

We were up at a nice time this morning... just before 8am.  :)  I feel like I had a fairly good night's sleep but I'm always so tired when I get up.  Some nights though, I don't hardly sleep at all OR I am up 2 or 3 times during the night, bathroom trips for me and Wayne.  He needs to be cath'd and he can't do it himself, so that is my  job. 

I have added some games to a tablet for him and I hope to get him to play them.  He is reluctant but I am going to encourage him.  I think it could help with his brain.

Something I have noticed that he tends to think I know what he is thinking.  Then when I tell him, you didn't say anything, he just tells me what his need is.  I tell him he thinks I'm superwoman and he agrees.  LOL

I'm having problems getting him to wear the right socks.  He wants to wear "normal" socks, the ones that cut into his legs (since they are swollen).  I bought him some new socks that are similar to the "normal" socks but he still doesn't want to wear them. He definitely will not wear compression socks.  :(  and I have trouble getting them on his foot.  Actually, I can't get them on his foot.  So I have to be the "bad" guy and tell him to take those (normal) socks off and put the right ones on.  In this case I know it isn't because of his brain.  This is his stubbornness.

I have to repeat myself a lot.  Either he isn't hearing me or his ears are blocked.  He had a problem with blockage but we cleaned them out so not sure that is it now.

I have been told that I need to make him try to do more for himself so I am trying to do that now.  He does tend to rely on me for too much.  I am trying to get him to dress himself first and then if he has problems, I will help. 

more later

Upside Down and Inside Out, our lives were changed forever May 4, 2010.  It all started when my husband, Wayne, had to have emergency surgery on his back because of a herniated disc.  This left him wheelchair bound and unable to walk, incontinent both ways.  I learned quickly how to care for him.  There are times sleep is at a premium as I find myself alone taking care of my husband.  To make matters more difficult, he was diagnosed with both Alzheimer's AND Parkinson's in 2012.  We are now learning or I should say I am learning how to deal with his having Alzheimer's not to mention we do not know yet what the Parkinson's will do to his body.

If any of you are dealing with your spouse with Alzheimer's and/or a disability, I welcome your input.

I will be talking about our daily life struggles. 

Please come back to read what is happening day to day.  I will try to post daily.

We married in July 1969 and have 4 grown children, 3 boys, 1 girl.  Our daughter is the oldest.  We also now have 10 grandchildren, one of whom is a girl, the rest boys.  We also have grandchildren through our daughter's marriage, 2 grown grandsons and 1 grown granddaughter.  We are very fortunate in many ways, but sometimes we find it difficult to see that.  We count our blessings daily.  We are church goers and love our church, a non-denominational church by the name of Southpoint Community Christian Church which endeavors to return to the teachings of Jesus when he was on earth, to follow his teachings.

Before his disability and Alzheimer's, Wayne was very active.  He worked 6 and 7day weeks as a maintenance person and often coached and/or refereed or umpired games.  Now he is stuck in a wheelchair and is not able to do much for himself.  The Alzheimer's has added to his frustration as he can't come up with the right words and ends up doing things wrong.  He cannot dress himself for the most part, part of that due to the disability, the other part due to his brain not functioning to allow him to put a shirt on right or his pants, rather than backwards, inside out, or shoes on the wrong feet.  Many times he will say something, and it makes absolutely no sense to me and I ask him what he means, but he can't explain it.  This is the beginning stages which scares me because I know it will get worse.

stay tuned for more....