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New normal

Professional caregivers?

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New normal    1,275

Hi folks,

DH and I recognize our plan of having one help the other has changed since now we both have PD.  Having a care giver will be sooner than later. Can anyone give their opinion on our options?  I expect us to have full time CG's in 3 years.  Up to then, we can get people to do household and outside work.  Since I dont know what to expect I would like unput from experienced  CG's.  Having your experience, would you have changed your decison?  My thought is whenever one of us is no longer maintaining normal functions...its time to have medical assistance.  These are the options I think we have.  Any comments would be appreciated.

1. Go to assisted living. . 2. Hire CG agency.  3. Hire local people ...like retired nurse.  4.  Hire a couple to live on site in RV or trailer.

DH is progressing rapidly.  He is a big man. i cannot assist him.  He fell  last week and we think he got a minor concussion.  I boldly speak about our upcoming "bucket list trip" to keep us making goals.  Reality is we don't know if it will happen.

i told him today...perhaps we go as far as we can...then call it quits.  Kinda like having PD.......

NN

 

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miracleseeker    675

A big man requires an even bigger man to assist.  Good luck with that.  My fear is having a stranger live at my house and in your case since you would need a man to do the job it would be even more frightening.    I hope you find a good honest one.  I'm sure they are out there.

 

 

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genden69    178

My suggestion is to find a continual care facility that begins with assisted living and moves to nursing home as needed on the same campus. You will not have to worry about caregivers who quit or are incompetent that you have to replace through a taxing process.  Hiring your own caregivers creates extra tax work in paying social security, workmen's comp, making sure they are bonded, etc.  You will also be relieved of home maintenance, yard work, etc.  Transportation would be provided as needed for medical appointments, etc.. Your home and accumulations would be taken care of through sale, etc. while you are able to handle those decisions.  These facilities are becoming more numerous and popular.  Do your homework and make sure they meet your needs.  My brother-in-law and his wife are moving into such a facility.  They have no children and don't live close to any family.  They are selling their home and making the move in June and feel very good about it.

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New normal    1,275

Thank you both for your replies.  We invested in this home to be disabled adaptable for me.  The desert with no population is 50 feet from the door, yet everything we need is 2 miles away.     We love it...thinking we made right decisions to be prepared...ya never know what is ahead...pray for the best and prepare for the worst.  Hmmm, this scenario was never thought about.  Yes, MS, DH is a big guy..50" shoulders...is not overweight...and still over 200 lbs.  His fall made me realize I soon will not be able to help him.

We are still in denial and divert from reality by talking about our "bucket list". Gender, what you say is pry what we should do.  I'll start looking for one.  We have spent the last 4 years in transition and are tired.  Changing directions now is hard...but not as,hard as what CG's have been through...nor as hard as PWP with a family at home.  Each of us has to keep trying.....and think of others.

Thanks for your time.

NN

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Linda Garren    752

NN, I sold my condo during a buyer's market, and I can so understand how hard it would be to look at a loss you would get when selling your home.  Still, things have worked out, and the person who bought the condo and I have become friends. :-)  Blessings through disappointments often happen. 

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miracleseeker    675

Unfortunately Caregivers are so hard to find.  People love babies so there are plenty of babysitters but get someone who will look after a grown adult with an illness?   Babies grow and get better while we just go downhill. Who wants to see that everyday right?   When my mom was in the hospital last year a young male orderly had the dirty job of cleaning my mom after she made a mess in her diaper.  I asked him why he was doing that job and he said because he came to this country 6 months ago and couldn't find work so this was it.  He was pretty numb to what he has to do day in and day out and just do it.  Even if you have all the money in the world to hire a good one he/she is still a stranger and they can only care so much.  It's a shame.

 

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genden69    178

Caregiver agencies provide stability.  If the aide is ill, they will send another one. They are bonded, so it relieves you of liability from injury.  The agency pays the social  security and workmen's Comp.. The problem is that unless they are there 24 hrs a day, they often are not there when you need them for falls, etc.. In that case, a medical alert might fill in that gap.  Yes, for them, it is a job.  Some are more caring than others.  We all wish to go quietly in our sleep before we are unable to care for ourselves, but we have to prepare for other contingencies.  My husband is fortunate as is Miracleseekers  mother to have a family member who loves them to meet every need.  I won't be that fortunate.  The hospice aides who come once a day to help me with DH are either in nursing school and will move on, or wish that they had more education and have taken the job they qualify for until they find something better. The hospice I selected sends an aide once a day to change him and bed bathe him twice a week.  A nurse comes twice a week to take vital signs and to change the dressing on the bedsore on his tailbone.  I think the dressing needs to be changed more often, but the aides aren't allowed to do that. I have done it myself, they can't fire me, but it is very hard alone.  No matter how you look at it, protracted end of life care presents difficult problems and decisions.

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miracleseeker    675

Well said G.   People can do a great job but the connection and bond is not there.  I wish everyone can realize that we are all getting older and yes I'm also going to be alone in my journey to old age.  Perhaps one day in the near future we have the option to go in our sleep peacefully and without worries.

 

 

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New normal    1,275

Hi folks

i am so sorry  I have two threads...have no idea how that happened...especially when such great info is here.  Thank you all for responses.  So much to consider.

I recognize there are many unknowns.  We will know in a few weeks if DH qualifies for VA assistance...but VA is associated with the worst of assisted living. I am not whining"...but watching us both progressing ....compounds our emotions....perhaps we are more vigilant and more aware...perhaps.... 

Our adult children are submerged in family and work...there is really no way..and they all have been through difficult life changing things...I just cannot imagine having them involved. I can see we have to be flexible.  That's why I'm trying hard to learn as much as I can.  Where can I go but to you remarkable care givers for the best advice?  Thank you so much.

NN

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HawkinsTN    3

New Normal, I have been hiring since 2014 for my husband who has PD.  I currently find my caregivers off of care.com.  The site has a company that handles the deductions for social security, etc.  My best advice is just take care of the current need.  The needs change and then you find another person to fill that need.  One day at a time.  Also, too, find a caring and loving person who has experience in what you need for the current situation.  The average time each person has stayed is 5 - 10 months.  I did hire a man who stayed 5 months.  He had been a football player and did a good job.  The men are out there.  The cost of a single room in a nursing home in Memphis, TN, very basic is $7,200.  Just try to keep your costs below what it would take to pay for a facility and you will be ahead of the game.  Also, do as much as you can for as long as you can.  When you see yourself breaking down in one way or another, it is time for increased help/assistance.  God bless you!

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Feisty Folder    162

My advice is to at least tour care facilities before you need them, it's difficult to be decerening in crisis.  "Act don't react" (a TV character said that, it must be true). Also , I don't know how it is elsewhere but all the facilities around here will put you on the waiting list, call you when theres an opening, and if you still don't need that level of care, you can pass without losing the spot on the list. That way in an emergency you're are more likely to get a top choice and not just end up where there is an open bed. But I haven't slept in forty hours, so use wisdom before taking advice from me. Tonight someone who lives in the same house I  do at the moment told me goodnight and I responded "goodbye..... Or what ever it is your supposed to say in this social situation because I don't remember"

Don't do sleep deprivation, it's way worse than drugs

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New Normal,  also have a big guy with PD.  He has fallen many times in the last year, and I've had to

call the fire dept. 8-9 times.  They are wonderful at lifting him up, and fortunately for us, are only

about 10 minutes away.  Don't hesitate to call them if you can't get your man off the floor. 

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