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Why Can't I Just Take One Day at a Time?
Maggs
Posted: Monday, September 30, 2013 5:14 PM
Joined: 5/22/2012
Posts: 786


Hello Friends,

 

So for the last few weeks I have started fretting about the holiday season and how we are going to work that out with the three aides we've hired. It's too early to bring it up with them, but I'm wondering if they'll work Thanksgiving, Christmas etc. Will they want more pay, maybe they want to work part time those days?  Etc. etc.

 

Mind you, it's still September.  So the universe decided to slap me back into shape today.  My mom fell again, the aide caught her so she's ok but as it was described to me she fell straight and forward and would have cracked her skull wide open if she had hit the pavement.

 

Little history for those of you who havent read my previous posts (my apologies to everyone who has!!),  Late May, my mom would walk unassisted several time a day around the block which is about a ten minute walk.  Early June, starting falling all the time then had a bad fall, bloody but ok.  Couldnt walk when she left hospital but started to again after a week or two. Now it's about mid June. Since mid June, with assistance (we hold hands or arms) my mom continues to walk around the block several times a day (not as often as before because she gets tired). She can walk by herself but she gets scared if she doesnt have someone to hold onto. Alas, earlier today the aid was walking with her and she fell suddenly forward, straight down, just like a few months ago.  The aid was able to catch her so injury was averted. She hasn't fallen in several months.  Now my heart is sinking again.

 

What is wrong with me?  Why can't I just take one day at a time? Live in the moment.  Here I am fretting over the holidays in September when my mom may be unable to walk or even know who I am by then.  She could be dead by then.  Worry is such a useles emotion, I hate it, yet I can't stop myself sometimes. 

 

Sorry, rant over I guess.  Thanks for listening...

 

Maggs

 


Tomc5592
Posted: Monday, September 30, 2013 5:32 PM
Joined: 11/17/2012
Posts: 1203


I dont think its too early to start talking to the aides about staffing the holidays.
The1&onlygirl
Posted: Monday, September 30, 2013 6:36 PM
Joined: 5/13/2013
Posts: 315


I had 3 aides for my dad at this time last year.  I spoke to them all about the holidays.  You certainly don't want to wait until the last month before, then if you needed more help you would not be able to find it.

 

As it turned out I had one staff that would work on Christmas evening, the others did not work at all.  Since other family was there that day it was not so bad, and he was only beginning of stage 7 at that time.

 

Bring it up now, and if need be start a search for a backup if needed.

 

Best wishes to you on your journey with your Mom. 

 

Shalom

 

Kathleen


Camaya429
Posted: Monday, September 30, 2013 8:45 PM
Joined: 9/1/2013
Posts: 87


It's ok Maggs, in the moment is not ours anymore, it's our loved ones moment, and they're never good. Same for "one day at a time", when we know the next day will probably be more of the same. I've thought about the holidays too, and it's my son's senior year in high school. I don't have a caregiver either. My dad cannot dress himself or shower by himself. Today I realized he can't count to 20.

I don't think there's anything wrong with you! Your mother has a terrible disease, and our lives change dramatically. We have no choice but to think about the future, I've gone as far as asking my mother in law how much everything cost for her mother's funeral, to get an idea for my dad. How depressing is that?

Worry & self pity are the greatest wastes of our energy, but how can we not? These are our parents! Hope you feel a little better.


Maggs
Posted: Tuesday, October 1, 2013 4:17 PM
Joined: 5/22/2012
Posts: 786


I'm sorry, I guess my post was poorly written. I have a tendency to ramble on.  I wasn't talking about the holidays and caregiver coverage as the point of my post.  I was just using that as an example of how I have a tendency to try plan out everything in my head as if I can plan out how this disease is going to go. 

 

It's stupid really, there is no control of this disease. I've learned that already.  In the beginning of this, a few years back, I was most definately paralzed by the "what if's" of this disease.  What if it's Alzheimers? What if she wanders off again and we can't find her?  What if she has to be put in a home? What if she doesn't know who we are? What if she is incontinent? What if we run out of money? What if I inherited this? What if she becomes violent? What if she dies soon? What if she dies in twenty years? What if my dad dies before her? What if? What if? What if?

 

It drove me insane, so I had to change my way of thinking.  When I find myself going back there I stop myself and focus on the here and now. Not a year from now, not next month, right now.  It's just so hard to do that at times.  That's my struggle.  My sister is so much better at this, she deals with the here and now and doesn't stress tomorrow until tomorrow comes.   I wish I could be more like that naturally.  But we are who we are I guess.

 

My mom's near fall yesterday was a reminder of that, she is at the end of stage 6, not being able to walk is stage 7. She's almost there, that's why that was a trigger for my post yesterday. It's a reminder that I just need to deal with what's at hand.

 

I appreciate your responses anyway, thank you.

 

Maggs


KML
Posted: Wednesday, October 2, 2013 11:49 AM
Joined: 11/30/2011
Posts: 2105


The journey is a delicate balance of planning ahead and living in the moment.  Practically speaking, we plan, we put things in order so we can minimize the surprises and upheavals.  We try to live in the moment and convince ourselves not to worry.  All of this is no easy task.

 

Do you think your mom would benefit from physical therapy and maybe use a walker to give her more stability.  Her legs might weaken up on her and she loses her balance.  This would be something a physical therapist could maybe suggest to you and help with.


caregiving daughter
Posted: Wednesday, October 2, 2013 1:22 PM
Joined: 11/27/2012
Posts: 2114


My guess is you are an organized/planful person and you are putting every ounce of your heart and soul into trying to make things better for your loved one.  Your mind is likely never shutting down from thinking about the next thing that has to be done. I don't know if there is anything that can be done about it.  You just love your mom.  If building a castle would make her better, I better you would already have the moat dug and you would be thinking about who could teach you to do the stone.  Just about the only thing that works for me is when one of my children has a pretty serious issue or even something as little as exercise.  If I really push myself on a swim, for example, I'm not so good at it so I have to put 150% of my mind into the breathing.  It's a ten minute escape.  Hang in there!
Maggs
Posted: Wednesday, October 2, 2013 3:36 PM
Joined: 5/22/2012
Posts: 786


Caregiving daughter, 

 

Have me met?! Haha  Yes I am the insane planner of all things. Lists are my friend. Of coarse, life cannot be planned. I know this, life has taught me this over and over, and yet I continue to try and plan. (What is the definition of "insansity" again! Haha).

 

and KML,

 

Thanks for the good suggestions.  My mom has a walker, but both the physical therapist and the visiting nurse advised against her using it because they said often walkers can cause greater physical injury in a fall.  My mom can't figure out how to use it so it's a hazard to her.  The thing is my 5'2", 110 pound mother is as strong as an ox.  She is in great physical shape.  Her legs arent weak, she's just forgetting how to use them.  If you ask her to lift a leg, sometimes she'll do it immediately and sometimes she just looks at you like's she's lost, she can't figure out how to do it.  She had PT after her last round of hosptilization but everyone who examines her says the same thing...her legs are really strong. 

 

Sadly it's just the crappy disease.     

 

Sigh.


The1&onlygirl
Posted: Wednesday, October 2, 2013 6:33 PM
Joined: 5/13/2013
Posts: 315


Maggs,

 

Sounds like the beginning of stage 7 if she is forgetting to use her legs.  My dad was strong and using his walker (he had arthritis in his back from an old injury and some involvement in his right leg from a TIA some years back) up until 1 1/2 months before he passed, then one day, he got up from his chair as usual to go to the bathroom, and I knew something was wrong. 

 

I diverted him into the bedroom but he collapsed in the hallway outside his bedroom doorway.  He never walked again... it was just that quick, the day was typical, nothing said or done out of the "ordinary" just his knees buckled and down he went, I was right behind him and caught him, and broke the fall. 

 

We managed to get him to bed, that would be he and I managed to get him to bed.  Me, my wrenched back and him crawling while hanging on to the rung on his 4 wheel walker.

 

Not sure how typical or out of the ordinary this sounds, but it was pretty much a different ability was lost every other week until the end came last Thursday, peacefully in his sleep.

 

Hope this helps someone whose LO is in a similar stage of progression.

 

Shalom

 

Kathleen


Maggs
Posted: Friday, October 4, 2013 2:11 PM
Joined: 5/22/2012
Posts: 786


Hi Kathleen,

 

Thanks for the response.  I agree with you, I think my mom is at the cusp of stage 7.  I'm so sorry about your Dad.  From what I have been reading on this forum, your experience is not uncommon, where a LO will simply collapse, never to walk again, or lose the ability to walk in a very short period of time.

 

I'm grateful my mom can still walk though I see her progressing.  Another posted recommended to me to videotape my mom while she was in her cute giggly phase.  I hadnt thought of it, I'm so glad that they said that. I have several videos of my mom now and she laughs looking at herself.  It was a great idea.  Now of course I look back at them and see her progression, far less speech, just laughing, parroting what I tell her to say.  I'm only talking about a few months. 

 

A little over two years ago my mom was normal.  This disease has moved fast and furious and yet taking her away from us in the most tortuously slow pieces at a time.  I really hate it as I'm sure we all do. 

  

 Thanks again,

 

Maggs


momandme
Posted: Saturday, October 5, 2013 2:19 AM
Joined: 3/5/2013
Posts: 720


Personally, I think it is wise to plan ahead and its common to start thinking about the holiday days especially when you will need caregivers!  

 

Life is about thinking ahead, for example retirement planning, or what college to attend or major to select or and the list goes on.

 

It is my thought that living in the moment is about cherishing what we have in the moment and welcoming the moment with love and affection toward our LO.  For example, I just hug and kiss my mom every day but I still plan for our/her future.

 

Rest assured that not everyone stops walking.  My friends mother had advanced AD and walked to the bathroom and around the house until her death.  She died in her sleep.  

 

I acknowledge that AD can cause walking problems but note, not always.  Sometimes elders simply lose muscle strength in legs/arms/become slow and so on.  Simply look around elder communities and you will see an abundance of elders without AD who use the assistance of walkers and canes and the like. 

 

It's ok to think about tomorrow or the possibility of your LO not being able to walk but for the purpose of determining what adjustments you can consider should that happen.  That's natural.  

 

Physical therapy is a great idea as suggested by someone.  Also my mom sometimes pushes a wheel chair for stability--the handles on a wheel chair are higher than a walker which means she doesnt hunch over when she pushes the wheel chair as she does if she is handed a walker. The wheel chair turns far easier than the walkers I have seen.

 

Also, gait belts are useful and handy but you mom might be a bit too unstable to rely on one.  There is also a thing called a MERRY WALKER.  Not sure how well it would fit in a home but it might be ok for a brief walk outdoors.  I certainly would take the necessary precautions because the pavement and sidwalk is very hard. There are solutions to many of these issues not all are fool proof of course...

 

So while you are thinking about the future, hold your mother's hand, hug her tell her how much you love her and continue on.  That's living in the moment IMO.