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.

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.

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.

Could you be a caregiver?

Everyone thinks about it at one time or another. What will you do if it comes to the point that your parent cannot take care of themselves? This is the ultimate question when it comes to the reversal of roles. You may think of it as your duty. After all, your mother or father did not have to take care of you when you were a helpless infant. But they did because they love you. Love has a tremendous amount of  influence on the things you do.

Before you make up your mind if you are going to be able to do this, you should be aware of a few things that will make the difference in whether you can handle it or not.

1) You cannot do everything by yourself. If the parent you are caring for is diagnosed with Alzheimer’s, in the later stages they are going to require watching 24/7. They can be likened to a child. All you have to do is turn your head and they can be gone. Enlist help from somewhere because this is impossible for you to do. You will do nothing more than exhaust yourself to the point that you cannot care for them at all.

2) Do not feel guilty for taking a few hours off from time to time. Guilt is hard to handle. You must prepare yourself for the fact that you will need a little bit of time for yourself. They will be fine with someone else for a couple of hours. Remember the first time you left your child with someone for a much needed night out? This is the same thing. You are not superman or woman and you are not invincible.

3) You must be patient. Your mother or father is not doing anything to irritate you on purpose. They may be slow or they may not remember but it is not because they do not want to; it is because they cannot. This is one of the reasons you need a break. If you are short-tempered you will regret it later.

4) Do not let your feelings get in the way of your better judgment. No, they may not want to take their medicine and they may have a adult version of a temper tantrum. You cannot give in and just let it go. They must be made to understand that the medicine is for their benefit and it must be taken.

5) Along the way expect a little grouchiness. People who are sick tend to be a little more short-tempered than those who are not. It is more of feeling of being helpless because of the problems they are having. Their body has failed them and they are angry.

The worst thing about caring for someone who is ill or has a disease that will get progressively worse is worrying about whether they are suffering. This can stress you to the point that you really do not know where to turn. Talk to their doctor and yours and let them know the situation. They may have some helpful hints that can get you through this.

Most of all, be patient, understanding, kind, and let them know everyday that you love them. If you decide to do this, that is the least you can do for the parents who have loved you for so many years.

Balancing Act

Since my husband’s cancer diagnosis in June - it’s become quite a balancing act for me.  I live in Illinois with my Dad, and my husband is in Arkansas at our retirement home.  I am so torn between the two places.  I know my place is with my husband while he goes through the treatments and appointments…but it’s quite a deal making it happen.  Mom isn’t all that great mentally, she’s slipping too - but she’s stepped up to help all she can.  I have a good friend, Gail, that has really come through for me.  She’s actually going to take off work to help me so that I can be with him as the radiation wears him out. 

 I’ll probably bring Dad to Arkansas with me part of the time.  I have no idea how that will work out, a completely different place - no cats to feed - a big dog that might jump on him - just lots of differences.  There is no way to prepare him for it, I’ll just have to jump in and see what happens.

On a good note - brother Dennis visited today with Mom and Dad at my house.  He offered to do whatever I might need done around the place while he was there.  I took him up on the offer and had him fix the satellite tv.  I know they really enjoyed the visit. 

I want to go home

This week has been heartbreaking.  Daddy seems to be quite clear in the mornings.  Breakfast, then his walk…but the last 3 mornings when he comes back from his walk, his observation is the same “I want to go home …and i mean to stay.”  How do I explain this to him - how do I make it ok.  He can’t go home, she can’t/won’t take care of him.  She says nursing home.
I think I’m doing the right thing - but he’s unhappy.  I don’t know how to make him happy.  He said “So I have to suffer.”

He’s right - he should be able to go home.  He worked all those years to buy that house.  His pension pays for it’s upkeep even now.  Instead, he has to sit unhappily at my house, taking his walks and occasional outings with me, and being bored.  There isn’t much he could actually do, although he would be willing to do anything i would ask of him.  I wish he could ride a mower - he needs that sense of helping out, doing his part I think.  Unfortunately, his thought processes don’t allow him to do more than maybe 2 things in sequence. 

I talked to my oldest brother about it today, I’m heartbroken for Daddy, and just don’t know how to ‘fix’ it.  I don’t think I can fix it - just going to have to try to keep talking to him, giving hugs, making him know *I* want him and find ways to keep him busy occupied. (easier said than done).   Big brother just offered that maybe tomorrow would be another day and he wouldn’t remember it then.  I thought that too, but this isn’t going away.

I wonder if he thinks if he goes home everything will be like it used to be.  He’ll think better, walk better, talk better….
I guess I seriously need to talk to Mom about this.  He will be home more in the next couple months, maybe they’ll work things out so that he can stay there.  She doesn’t have to ‘give up her life’ - she only has to alter it a little .. after all when we marry we pledge - in sickness and in health.  I found ways to make my life work with him here.  Just a little less me, and a little more him is all.

Family Visit

My oldest brother, David, came to visit in October.  He stayed a week.   The highlight of his visit for me was that I had him clip Dad’s toenails!  I’m still not sure he understands what it is to take care of him day after day.  Dad was pretty quiet while Dave was here - watched ballgames with him and ‘guy’ movies.  They spent one morning alone when I had something I had to do (can’t even remember what).   Mom was here with us for 4 days too.  (David slept in the camper)

I asked David if he’d take Daddy home with him for a couple weeks.  I told him I’d come out and pick him up, but he just didn’t see how he could do that.  He has work (self employed - takes photos for loan and insurance companies) and then there are his religious obligations as well.   His wife is also self employed, and he has 4 grown children in the area.  Dad can’t be left alone, and he didn’t think he could work that out.   He did help me financially for the first time.   He gave me a $100 Walmart gift card.

Mom enjoyed hearing his stories of vacations and cruises, and glorious meals out.  They have such nice restaurants where he lives, way better than the ones here.  His wife has started using all organic foods at home, which of course we don’t have a lot of that here, unless we grow them ourselves.  They enjoyed talking clothing too - He got some amazing deals on designer clothing.  Mom  loves her clothes too.

He calls Mom a couple times of month and listens to her complain about me, making him the good guy I guess ha ha.  He didn’t mention when he’d be back - I hope it’s before Daddy’s toenails get too long!

*I* remember

Not long after Dad came to live with me, I passed by his room and he was just sitting on his bed with his head in his hands.   I asked him, “What’s wrong Dad?”

He said “I don’t know - everything.”  He had tears in his eyes.   I sat down beside him and talked a bunch of ‘it’ll be ok’ and ‘i love you’ and ‘I’ll take care of you’ to him. 

He held my hand and looked me straight in the eye and said “You’re a good woman.”    I will have that forever.  I don’t even know if he knew who *I* was at that time, but it’s something that i am going to keep in my heart forever.  It’s something I can go back to when I’m feeling particularly overwhelmed or down.