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Topic It's so hard on everyone Go to previous topic Go to next topic Go to higher level

By LibbyBuck On 2011.01.12 21:11
The other day I said to my brother, "When I think of all the things that are in place for this." Then I started to list them:

2 walkers
2 wheelchairs
3 people that are willing to be on "all night duty"
3 people that are willing to be on "all day duty"
2 people who are willing to "fill in the gaps"
1 person to go grocery shopping
4 people who will cook
2 handrails in the bathrooms
1 porta-potty for night time
Thousands of night-time pads for bedtime pee
Knee pads
Knee rubs
Knee warmers
Lotion for knee massages
Cream for pain

The pill Schedule:
7:00 am 4 pills
After b-fast 1 pill
After b-fast Vitamins
10:00 am 2 pills
1:00 pm 2 pills
4:00 pm 2 pills
7:00 pm 3 pills
After Dinner 4 pills, 2 vitamins
Before bed 1/2 pill
Phones that plug/unplug
Mountains of papers for her to rummage through all day
Upto 3 knee rubs a day
Phone messages to answer
Mail messages to answer
An Accountant to talk to
Bank accounts that need attention
Blood Test Appointments
Caretaker schedules to set
Semi-Annual Doctor appointments
Various Cuts and scrapes from falling
Favorites, and non-favorite foods
Handi-capped parking permits
Prescriptions to pick up
Checking accounts to handle
Friends wanting to visit schedules
Freezing Episodes
Flopping Episodes
Fires to make
Temperature extremes to deal with
Sleeping issues to address
Other issues that pop up
Never ending laundry
The cleaning of the house
Garbage and Recycling days

That's all I can think of because I'm tired and my relief person is not reliable and I'm stressed out to the max.

Love, Light and Compassion for all who should choose to read this.

By karolinakitty On 2011.01.12 22:42
That truly is an amazing list. The sad thing is that most folks do this without:
3 people /all night
3people/ all day
2 for gaps
4 to cook

Most folks do it with 1...that's why it takes such a toll.....

By Emma On 2011.01.13 05:47
kk - amen. I do all of the above and more plus babysit for a 20 month old granddaughter one morning a week plus have responsibility for managing finances and scheduling and arranging transportation for an aunt with Alzheimers. I do this by myself with one three hour break per week.

By LibbyBuck On 2011.01.13 09:28
Thank you for your reply's - I know that we are blessed to have help. I pray everyday for those of you who are going it alone. I don't know how you could possibly do it. You are the saints of the universe.

Love and Light to you all

By marie On 2011.01.13 09:46 [Edit]
I do everything on that list by my self, how lucky you are

By lurkingforacure On 2011.01.13 12:13
What is interesting here to me is that it's all relative. Having to schedule 3 people to be "on call to help" may be a chore for one caregiver, to another, it's a godsend even having anyone on call to help, much less three people.

I try to remember things could always be worse and this forum helps a lot. While I am free to vent and rant to those who are in the same boat, which is a true blessing, most of the time I feel my ventings are quite petty in relation to the reality most here are living 24.7. I usually come away very grateful for the function we still have, another blessing.

By LibbyBuck On 2011.01.13 20:54
Lurking, I am just amazed at the amount of effort that has gone into helping one person. One very special person in our family. We love her so much, as everyone does their own PDP, it's a wicked and evil disease and anyone who has to deal with it, alone or not miriads of issues. It's unbearable to think that our strong, amazing person can't do it for themselves. It's simply, not freakin' fair. I am thankful for this forum, it gives me a place to discuss when I feel lonely and neglected.

By Emma On 2011.01.14 03:54
Lurking and Libby, You're right, it is all relative. I remember being very stressed and tired early on in my husbands disease when I was still working and he was much better than he is now and still had a lot of independance and didn't need the hands on care that he does now. It's not just the amount of work; it's the worry, the grief, the fear, the everything. It takes a toll.

By oshroshr On 2011.01.16 21:16
I agree Emma. it's the worry, the grief, the fear, the everything. It takes a toll. I keep trying to figure out how long the current status will last. Right when I get a pattern in activity it changes. Months ago, there was a lot of sleeping. Now, due to Mirapex and gabbapentin, there isn't enough sleeping or there is sudden sleeping so I am afraid to fall asleep first. Each day seems the same but then as I look back over the last years, things have changed drastically. And I also have my husbands 92 year old mother living here. Life can be a challenge.

By monopoly17 On 2011.01.16 21:31
I wish I ahd all that help. I'd gladly make any schedule to meet their needs. I'm disabled myself and I'm trying to take care of my husband with PD and dementia.
I have one person who comes in 3 days a week to bath him and lets me do errands. Then there is one other person who comes in the other 2 days just to bath him. So I do get out to do errands and just started to take one day a week for me.I have to sleep with one ear open to make sure he doesn't get up and wander. He's been alittle better about that. I'm just totally exhausted. I finally told my kids I'm going away for 3 days in May and he's all deal with it.!

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