Growing Up

Seems to me this is the most grown up thing I have had to do - becoming the wiser adult for my own parent.  Some people call it role reversal, but I don't feel it is exactly that. I am a parent and have raised my child, but this is very different.  I have to stop being the child in this relationship - a lifelong pattern - and constantly struggle with the back and forth of stepping in and taking over, and backing off and just be "part of the family"

Fingers are crossed - the going is good these last few days

MOW are still in - (for 3 days) - they're mincing the meat for us.  New pill organiser I got for Mum to help her work out what day it is (and me to track her medicine taking) is "sticking" after I went over its workings several times and filled it with her.

We're going to sort out some legal stuff on Thursday - then I'll have everything crossed that the JP will allow us to sign a new Power of Attorney as the old one's lost - of course!

And Friday - unknown to Mum yet -  I have a great homecare service coming to meet her.  Hope she's in a good mood for that.

Lots happening but, as I said to my son, its all only holding things at the bare minimum - we've still got to do the forward planning for residential care.  No-one knows when that will become necessary.

All alone on this journey?

I feel like I am alone on this journey.  Its a curious thing because I know many others are on a similar journey - we share so many of the same experiences, feelings, frustration, etc. And yet, no-one knows my mother in the same way that I know her.  Others know her in their way.  Many people know about Alzheimers, but most people do not know about how her Alzheimers is effecting her, and me, and others who remain close to her.  I know it is important to talk with others about it all, for many reasons: sympathy, other ways of looking at things, ideas, advice, etc.  And yet sometimes I feel I am just pushed and pulled by others' advice.  There is already so much to worry about and NO clear answers or pathway, and yet others give me even more to worry about at times.  But I am the one who sits with her, talks with her, understands where she is this day and why so many things do not apply to her now, and some do.

I need to accompany her.  Usually I do this by taking things as they come up and trying to work them through with her so I can get as close as possible to it making even a little bit of sense for her.  I accept it may not always be this way - I may have to sometime go directly against her wishes and comprehension, but that's not now.  Something about it reminds me of making the decision about putting my dog down some years ago.  People sometimes have strong opinions about when that should be done, but who can really know better than the person who knows and loves the dog?  And knows themselves and their own capabilities.  I'm not really sure why this is a parallel.  Its something about my response to "you should do such and such" from people who are nowhere near the person to whom it is done, and are not in the driving seat of my life.  I know people mean well too, but I can only do what I think is right - and maybe that's what makes it feel lonely.

I've been trying to think of a metaphor that best describes this experience.  In some ways its like those circus people spinning plates.  You have to keep about 6 - 8 plates spinning at once.  If you take your eye off any they'll slow down and fall off, so you need to shift your attention back and forth.  At a more pragmatic level, there are about 10 things to be done (most not simple or easily done - e.g., finding a good  care facility) and the priority of which are at the top shifts. No-one knows what's going to come up next to shift the priorities.  Sometimes the shift is brought about by a worried emotional response of mine to an important development, other times its a cool headed thought through solution.  Its seeing a problem or hazard in its early phase and trying to shove a support structure under it.

And its exhausting - plenty would agree with that!

Doing the right thing by someone you love with this disease is a challenge like no other - I do know that.

The things that Mum doesn't do

I'm trying to figure out what is Mum's real difficulty with Meals On Wheels - bit difficult to work out from afar!  She tells me the meat is tough, she eats some of it, covering it with gravy helps.  And she'd rather eat things she makes for herself. My logical minds says to her, "well just eat what you want and leave what you don't" (cause i don't want her to cancel it).  That's probably no help to her, with her limited available logic.  I know she doesn't like to waste food.   I notice she keeps their meals for quite a few days - I think they're hard for her to tackle somehow.  She's got to try and figure out how to get through them - eat some of the tough meat - without wasting too much.    She says she'd rather eat her own cooking - which is true in that she can cook what she likes, but not true in that she is cooking less and less and not shopping often enough and eating too much rubbish - i.e., sweet things!  So I'm wracking my brain to see if there's a way to fix the REAL problem - that its too hard for her to figure out how to eat Meal On Wheels.  Maybe frozen meals will be better, maybe they won't.

The codes for things she doesn't do anymore are - "I'm not worried about that; that doesn't matter".
Code for:  "that's too hard for me to figure out, so i won't/can't.  Better to not think about it and focus on what's in front of me, or go to sleep in my chair".

Food - no I don't need food

Trying not to be angry now that Mum has just said she's going to cancel Meals On Wheels!  What's the way around these beyond reasoning thoughts again??  Just when you think one of the support structures is in place.....

Breaking heart

My heart is breaking as my mother's brain is dying from Alzheimer's Disease. The little girl inside of me, who always wants to make sure Mummy is OK, cannot always do that now. The grown up part of me has to take them both by the hand and lead them through this scary and bewildering forest.

Two steps forward and 20 steps back

The forward steps were Meals on Wheels, and getting Mum's hair cut and washed after years!  She looked like her old self (which of course she is not, but I enjoyed that for the day).   The back slide, after that false dawn, is that she's now confusing night and day - thought 6.30pm was 6.30am when I rang yesterday and was in bed.  Its the last "straw" for me supporting her staying at home by herself - my sister and I are now shifting gear into finding a residential facility to move her to. Heaven only knows what bumps and skids in the road that will throw up, but I am now determined (with my heart in my mouth).

A Food Victory

I had such a food victory with Mum yesterday.

For some weeks I have been monitoring her buying and eating food - noticing she's been buying and eating less dinners (more cereal, breakfast and lunch type foods - and more lollies!) and shopping for food only when its run right out.  Also substituting corner store small purchases for a proper supermarket shop.  Sometimes.  Because, of course, the course of true Alzheimer's is never a straight line!

So consequently I have been giving a lot of thought to what will be the best solution to this emerging puzzle.  I've done some background investigating and decided Meals On Wheels will be the best substitute to this diminishing capacity to feed herself.  It will also provide her with some much needed social contact as they call and deliver, and provide someone else to "visit and check" besides me! When the time is "right".

I was aware on the weekend the supplies were getting very low, so started calling about how much she had left and what she was going to eat each day. On Monday we had torrential rain - which was stopping her going out to shop as well.  That night I was plagued by the need to take action.  I investigated online shopping, even when my tired brain could hardly stand all the fiddling entries! But by Tuesday morning (after sleeping badly again) I'd decided it was time to engage Meals on Wheels.  They're so friendly and understanding too.  So I ordered it on her behalf and they can start the very next day!  Done.  Told her - somehow she accepted it - after all it was still to wet to go out!  Thank you rain!!! So from now on they'll deliver at least one proper meal every day Monday to Friday - shopping won't matter so much, and one less thing for me to monitor and worry over.

Sometimes its all about timing - things slip into place when some feasible excuse comes up and Mum accepts it.  I'm often waiting for opportunity to knock.

Now all I have to do is get the mongrel "homecare service" happening. Its up to official complaint level now.  But I can't bear to go into those details.

Thinking of victories only at the moment!

Detour - there's a funny road ahead (as the song says!)

As I waited for the first "in home cleaning service" to start (all day - to no avail, again - but that's another story!) at Mum's place today, I asked her to give me the Enduring Power of Attorney she'd made out for me years ago, as I thought I may need the original sometime soon (some places accepting a photocopy, and other places not).  I felt a bit ....something......apologetic almost - because I thought she might balk at the idea that she can't make her own decisions.  But no, that wasn't an issue - the issue for her was she had no idea what it was and absolutely no memory of having done it when I reminded her.  What could be a better indication of the need for me to obtain it?  She was in fact very co-operative, and we searched together in several possible locations - she only remembered one of them!  We found a very formal looking document headed Advance Health Directive - I flipped through it and saw the words EPOA in it, so took it with me.  Of course, when I got it home and went through it thoroughly, it was NOT the EPOA - I say of course because EVERYTHING on this journey is complicated. Nothing straightforward.  Its a journey of detours and detours and detours, such that if I don't actually list the things I have achieved I begin to feel I've achieved nothing except going in circles!

Phone Call To Lala Land

..where Bonnie lives presently.

- I've been upstairs all day today (oh, I wonder what that means)
- No, I haven't noticed the cool breeze - yes the windows are shut in the living room.  You just have to shut them, and open them again, with the changing weather ( I suggest, again, it would be cooler if you open one - when am I going to give up on using logic?)
- Well, I'll have to go shopping tomorrow, I haven't anymore bread - its a bit hard without bread
- What will  you eat tonight?
- Oh I have some vegetables - (lists food - protein has not featured for a while now except the dairy kind - milk and yoghurt - and the many lollies she enjoys and will shop for.)  (I foolishly suggest less lollies, again - muttering about diabetes...)
- I can see in the mirror how wide I am getting. (And tells me exactly which of the 4 or 5 different kinds of lollies she eats when)  Maybe you'll need some new clothes then.  Oh I have another dress - I'm not worried about that. (Someone else will have to start worrying about it soon then)
- Are you finding it difficult to get to the shops? (She does not answer directly but i wonder if she might be and think about introducing the idea of someone taking her shopping, sooner rather than later)
- I've been listening to Tchaikovsky - lovely music (oh good, music still works)
-Saw a program on TV about miners  (she's remembering how to work the new TV then - another tick)
- Yes, I got the milk alright on Friday - i got up at 1 o'clock (morning) and it was there, so I just brought it in and it was still cold (Oh, good,  I say - i've stopped introducing logic to this topic!)


Am I getting better at speaking lala?  I'm a slow learner i think.
But she's happy - and I'm very glad of that today.


Its like having a conversation on 3 levels - listening, responding, decoding, making mental notes for my plans.

Coming Out of the Fog

Dear blogger-sphere,

Somehow the fog is clearing somewhat, I say hesitantly.  Had a break from all the "must-dos" by being on leave from work for a few weeks, getting several things done and garnering support and some action from other relies.  There seems to be a tension in me between wanting to rush in and "fix everything", not really being able to do this because each step is quite hard emotionally and usually intricate, and so having to do it all a bit at a time but live in the presence of the mountain of stuff yet to do! Tomorrow begins someone cleaning the house - a huge issue for Mum who's never wanted strangers coming into the house, but I cannot wait for it to be clean after years of tolerating increasing dirtiness.  Not done yet, of course!  Would love to move onto cleaning her up - especially her hair (now long, and long unwashed)- that of course will not be simple.

It has helped becoming more informed about stages of alzheimers and what the disease does to brains - at least I can see something of what's ahead and how to plan, not feel constantly lost and confused about what to do.  I predict, based on the latest info, that we'll have about a year of her being in her own home before she needs to move to supported accommodation, but that of course I could be totally out.  After all I can pinpoint stage 4, or "mild alzheimers", but don't know how far along she is, and everybody's different!  For now though the plan is to put in as much community support as we can and see how long that maintains her at home.  Courage!