How much longer

Not sure how much longer Mom and I can do this with Dad.   When he’s with me - he wants to be ‘home’.  She says when he’s there, he wants to be here.  I told him that- and he said “I just want to go somewhere!”  I told him I thought I’d get a job as a bus driver and just let him ride with me all day.  He got a chuckle out of that - the first one in many days.  He has been sulking a lot.  He refused supper last night - said “I had this “expletive here” last night.  He hadn’t but whatever - he got cookies for supper.   Like a child on a long car trip saying “are we there yet?”  He asks continuously, “when do i get to go home”.  

We were busy yesterday - running around - I had to mow, and we made a lot of short  car trips to the store etc.  He was fine during the day - but along about 3ish - the mantra begins - after 5 - he’s mostly out of his mind completely.  He was looking for where he’s supposed to sleep in this place last night.  He said there was a piece of paper with it all drawn out somewhere.  Other times he just talks nonsense.

Hygiene is getting to be a huge issue.  We’ve both taken up the rugs in our bathrooms.  He tries to clean up his messes - but ends up making a bigger mess most of the time.   He has to be prompted to wash his hands and shave.  He keeps his hair combed and his shirt tucked in though.

He’s barely sleeping at night, which keeps me up as well.  He wanders the house, and ends up in his chair.  His eyes are red rimmed and he looks exhausted.  I tried giving him a tylenol PM - and it was like it did exactly the opposite of what it was supposed to do, so no more of those.

I called my brothers and talked to them, and then made a trip to talk to the people at the nursing home in his home town.  They are nice people, and it’s an adequate home, not as nice as the one they have in my town, but it would be closer to Mom, and maybe he’d get more visitors there.   We were told that there is a program that would protect Mom so that she wouldn’t become impoverished by putting him in there.   It’s through public aid.  I have yet to talk to them. 

I don’t know how I could face him again if I give up.  I feel like I’m punishing him for something that he can’t help.  My head knows that’s not true, but my heart just aches.  I cry when I think of him there… except at 3 am when he’s woken me for the 4th time… then I may be thinking more clearly, and realize - I could sleep for more than 3 hours in a row.  I could feel good again, maybe I wouldn’t be depressed.  I could take care of my husband who needs me, and pay attention to my work.   Selfish?  maybe.

After many good days - a really bad day

He’s arguing about how he doesn’t live here.  He’s went through paperwork, even took some letters out of the trash.   Told me we had to get out of here, there was nothing that he could find that told him who lived here.  I showed him an envelope with my name and address on it.   “We’ve got to get out of here. Aren’t you taking me to Tower Hill where the McNeese girls are?  I can’t stay here, I don’t have clothes here.”  So I sent him to his bedroom to go through his drawers.  

Mom’s told me he’s done this at her house before, he’s never done it this bad here before.  I have nothing to relate it to - he was fine this morning when we went to WalMart and the post office.  We had a hamburger for lunch, and it’s been downhill ever since.
I have to get some gas and a couple errands -maybe going out will bump this fixation out of his mind.   Maybe a dairy queen … I know that always helps me ha ha.

Is clearer better?

i don’t know if when his mind is clearer if it’s a good thing or  not.  When he’s thinking fairly well - he WANTS TO GO HOME  -when I explain it to him, once again, he says but that’s MY HOUSE, it’s where my friends are, people I know.
I cautioned him about being angry when he’s there and shaking his fist at Mom, and he said ‘Then she ought to behave herself.”
I talked with one of Mom’s friends today about the situation, and she really hears and only sees Mom’s side.  I see both sides, but don’t, and will never understand the lack of compassion and caring that is missing from a ‘good Christian’.   Granted, she’s getting bad about memory things, and is considered deaf  -  but you don’t have to remember to be nice or loving - and you don’t have to be able to hear to be nice either.  My brothers see both sides as well..  and both sides of her. i love her, but she’s self centered, and hypocritical.

He told me he sees Mom out running around, on the back of a motorbike, he’s seen her a lot.  She’s just riding around he says.   I don’t know if this is a memory or a hallucination, but he believes it and gets all tight mouth with me when I disagree with him.

One part of me wants to just take him to her and say - listen he wants to live in his own house, how about you take care of him, and i’ll help you when you need me.   Jim’s warned me several times that I am not going to be doing this much longer, that he needs taken care of and he is the one I made a vow with. 

One day at a time.

Memory gets worse later in the day

Dad seems to be settled in a stable pattern of memory during the day time.  Not that he remembers much, but he knows where he is and why.  As the day progresses, however, it deteriorates.   I’m learning not to tell him of future plans, for instance, we’re going to the grocery store after lunch… because he will dwell on that and worry on it - he doesn’t want to be late, or miss the trip I guess.

We hadn’t had an “I lost my keys” episode for quite a while until last night.   He got up 2 hours after going for bed and was rummaging in his dresser drawers.   When I told him where his keys were, brought them to him and showed them to him, he said “Not those keys” - I hung them back up and he came into the kitchen to examine them again.  He dropped them - hung them back up, and wanted a drink.   He got his drink and went to bed, keys forgotten. He didn’t even get up until 5 am!

Today I’ m taking him to Mom’s for 5 days while I go to see my husband.  I haven’t told him yet, or packed his bag.  We’ll do it just before it’s time to go.   I’m learning!!

Is anyone else coming?

Dad stayed Saturday and Sunday at his house with Mom.  I picked him up Sunday afternoon and brought him ‘home’, except it’s not home yet to him (again).  Sometimes I wonder if the time ‘off’ is worth the days of reorientation when he comes back.
Mom isn’t feeling well, has bloodwork today, and is in some pain in her back and hip.  I convinced her to take an Aleve.  She didn’t think she should tke anything with her other medications.  I guess her pain made her grumpy as she called Dad “dummy’ when she asked him to go into HER bedroom (where he never goes) and get her the telephone.  I guess he couldn’t find it.  Not sure why she didn’t just have him give her the phone that is on the wall where they were with a long cord attached to it.  She could have pointed to it.

Now that he’s back here, he has been acting like a guest rather than someone who has lived here for over 2 years.  A common question is “Is anyone else coming” - I don’t know to whom he is referring, but the answer is nearly always ‘no’.  He asked where Jim was, wanted to know where the other dog was (dead for 6 years).  He wanted to repack his bag last night for when he went home.  It’s going to be a constant explaining and discussing the going home thing today.   Then, too, he could take a nap, wake up, and everything be like it was.   I told him Mom wasn’t feeling well, had some tests at the hospital and he said “She needs someone to help take care of her too” …meaning him.

Sounds petty, I know.  It isn’t unless you’re living the constant repetition coupled with the pity you feel because he can’t be where he wants to be.   

I had lunch with a girl that I grew up on the block with.   Her dad is a retired police officer, a little younger than Daddy.  She told me he said that “Max is a great guy, you won’t find anyone that doesn’t or didn’t like him.”   Made me feel real proud of him and I’m glad she shared it with me.

Happy 89th Birthday

Although Dad never believes me when I tell him how old he is - today (Jan. 1 2009) is his 89th birthday.  I don’t have anything big planned for him.  I had thought we would go out to eat with my mother (his wife) - but she said  “Just do whatever don’t worry about me.”  To give her credit she did send a card for him.   I really think, even though he won’t remember it tomorrow, or maybe even an hour later - we should still treat the day like we always did with cake, candles, and gifts.  

I bought a can of oysters yesterday and I’m going to fix him oyster stew for his birthday dinner followed up by his favorite coconut cake.  He told me yesterday he didn’t like oyster stew - but I know he does, it was a favorite at the church soup suppers for over 50 years.

He was cute and cutting up and joking when I went to pick him up yesterday.  Mom told me that she had done up all his laundry.  He told me she had made him sit around naked while she did it.  He settled back into the routine here after a little bit of confusion after being gone for 10 days while I spent Christmas with my husband.  He did ask where ‘the old man’ was (Jim).   Of course everything is minute by minute - something could trigger a change at anytime.

I’ve made a resolution to try to find more things to keep him occupied. It’s a real challenge as his motor skills are poor, his eyesight is poor, and of course the ability to do a series of actions is limited.  He does NEED chores or jobs that he doesn’t resent - and a feeling of usefulness, as well as something to keep him from being so bored!  These will have to be chores he can succeed in, as being unable to do them create frustration.   I’ve really had my thinking cap turned on high for this one.  When he was in the nursing home, the aides would give some of the ladies there baskets of wash cloths to fold.  They would sit and fold them over and over again.  I’d really like to find something a little more ‘real’ than that.

Christmas Cookies

The Christmas Cookie decorating went well yesterday - well except for the fact that I burnt the cookies.   Dad was ready, willing, and able to help me out.

It’s been a while

I know it’s been a while since i’ve been able to update the diary.  My husband was diagnosed with aggressive prostate cancer in June - and finished his radiation mid November.   My mother stepped up and took Daddy.  When i would come back to IL for the weekend (to get mail etc) I would take him and give her a break (and make him shower!)  Back home and back to the regular schedule.   I cooked a small turkey for Thanksgiving and made dressing for my first time.  It was pretty good.  Since Mom was here, Dad thought he should go home with her.  She suggested she’d take him until the beginning of the next week, and said that we should split our time taking care of him.  In the next breath, she asked me if i would have him until I left for Arkansas for Christmas, (Dec 20).  Well, afterall, she did have him the 6 weeks before while I was with my husband.   I honestly tried to take Dad with me as I mentioned in the previous blog. 

We’re back in routine now, such as it is.  He went to bed at 5:30 last night, nothing I could do, say, or suggest could make him stay up longer.  Needless to say, he was sitting in his chair when I woke up at 4 am.   It’s nearly 7 am now, and he’s drank his coffee and is napping.   He gets very upset and I have to explain to him over and over why he can’t be ‘at home’. He loves me - but he misses his wife and his home.   We get along fine - he gets upset at me sometimes, but it never lasts.

My oldest brother is coming to see us tomorrow.  He’ll be here a week.  It will be nice to have someone in the house so that I can run out and do things alone.  The weather is getting bad, and dad’s mobility is getting worse and worse.  David will stay with dad while Mom and I go Christmas shopping.   I think Mom will spend the night Tuesday night, and we’ll go Wednesday.  David will go out to the bowling alley Thursday, have lunch with her, and then go visit some of his hometown/church friends. 

I bought some cookie stuff to bake Christmas cookies and icing and sprinkles.   Dad needs something to do once in a while, and I hope I can get him interested in that.  He’d do anything to ‘help’ me - sometimes it’s just more hindrance than help.  I have to be very patient.   He has taken over closing the curtains and locking the door at night.   Since I had the fence put in he can now let Herbie in and out too.   He needs to be useful.

We did have an incident yesterday - he was pulling at his hair.  not pulling it out - just pulling at it.  I asked him what was wrong - but he couldn’t verbalize - he didn’t have a headache - it wasn’t sticky - nothing was in it - finally he said it was “tight’   I suggested he get out his comb and comb it.  He did that for quite a while.  I think it soothed him, and by the time he was done - he was just combing his hair and had forgotten all about the ‘tight’ hair.   You just have to be creative with how you deal with the odd things that come up.

Is it Fair?

I had a friend ask me if I thought I was being fair to Daddy by keeping him at my house.   It really raised a lot of questions in my mind.  I know it’s not fair that he isn’t living at HIS home - but nothing I can do about that.   Is it fair that I haven’t allowed him to go to a nursing home?  I don’t know.  I guess I need to pro and con it - think of it non selfishly. 

Pros  - For him:  Activities and people around him all the time.
                               3 square meals a day
                               immediate medical attention if he needs it
Pros - For us:      Freedom to do as we need to do
                              Less stress and worry
                              I’ll be able to help Mom more with her problems.

Cons - For him:   Strange place, strange people.
                               ‘locked up’ when used to freedom to walk and go outside.
                                He’s not sick
Cons: For us - Mom’s income cut by 2/3rds

I need to think about more pros and cons. There are surely more than this.
                         
            
           

I want to go home Part Two

I seriously may lose my mind.  Seriously.  How can someone who can’t remember 5 minutes to the next be so horribly homesick.  I can explain and explain about why he is here, and how long we’ll be here and his constant refraint is “I want to go home”.  I am upset and crying because he is.  It’s making me angry, because I feel guilty I guess, that I can’t fix it for him and make him happy.  I try to take him somewhere every day and keep him occupied, but my business is suffering because I have to cater and worry about him 24/7.  I’m afraid he’ll take off in the middle of the night.  I won’t be able to sleep tonight for sure.  I’m going to put a chair in front of the door when I go to bed.  I look at him and he has this frowny unhappy face.  He keeps rubbing his face and beating his fists on his legs.  He gets up and sits back down.  I have to quit being angry.  I know he can’t help it.  He hasn’t been able to live ‘at home’ for 2 years because I’ve had him living with me.  I even told him Mom would put him in a nursing home if he stays with her, and he said, “fine put me in a nursing home”.  

If I make it the rest of the week, I will be surprised.  God should know by now how much I can take, and I was there last Thursday.  This combined with being apart from my husband while he goes through his cancer treatments, losing Rock’s grandma last week, and not being able to work because of taking care of him has cracked me right down the middle and the crack is getting wider and wider. 
I’m not sure I even want to be strong anymore.
Pity party time - bring your own Kleenex.