It has been a while since I have jumped in here. DH is started to show signs of stage six and I am really getting tired of feeling trapped. I really am not cuz I have a caregiver(family friend that I pay)staying with DH while I am at work but weekends are on me. It has been a long time that "MY joe joe" has been gone and this other person has stepped in his place.We've been married 18yrs. I do not have anything in common with this man and really dislike taking care of him,THERE I SAID IT OUT LOUD!!! As a nurse I know i am able to give him good care and fully intend to but I sure do not have to like it. His sister helps me sometimes but has issues of her own so I do not ask often . His kids ---a joke--. my kids are 100 miles away with 4 kids each so the do what they can(stayed with him so I can do things occationally) it is getting harder.Barb in kc.mo

I don't think you have to be a solo caregiver to feel trapped - I'm not, and I do.

I also think it's OK to dislike the caregiving - and the person receiving the care. The fairy-tale version of Alzheimer's (docile patients and selfless caregivers) doesn't hold water.

In other words, most of us who are on this territory know what you mean. So keep posting - we understand.


Best,
Alan

thanks Alan. This week has been the pits. I had a dental appt monday and let,s just say ----you won't see me without them! So I am not feeling my best at least I was smart enough to take the week off because I look like someone off the planet of the apes right now.hehe I tried to get my caregiver to come stay with Dh this weekend so I could go out and land in the rv somewhere but he is afraid that dh will just think I have left him and be a big problem. so much for that thought.

I hear you. Flu is affecting my caregiving mood at the moment...

Any chance you can get the caregiver for a few hours? You could hole up in the RV for a brief while. Even if you don't take it anywhere, at least it'd be a change of scene. Just a thought....


Best,
Alan

may have to do just that. Go get your bankie,some chicken soup and feel better.

I am the neighbor, paid caregiver. I know that her niece will come in if i need her to. However, they pay ME to deal with Miss Marie. So I have had exactly 3/4 of one day to drive up to my mom's family reunion in a year. Everyone works retail so even Christmas day, I deliver breakfast, the church brings lunch and I am home for a late dinner... I feel trapped. I am looking for some one to take my 'shifts' now, so I can be gone for a weekend on a lark with the girls... I am so looking forward to it. But i get a little teary eyed and gloomy thinking I wont be able to find some one. I dont mind, well the family doesnt mind hiring a 'professional' service. But I need them to follow OUR ROUTINE. I am afraid that they will come in as know it alls and cause more problems than me just bucking up and working straight through the next year or so... at 89 with late stage 6 I am guessing a year or so... sigh... i have to get back to my desk...

Sounds like everybody's having a fierce time. Which is not at all surprising, of course.

For what it's worth, I started out with a private caregiver, then added an agency for additional hours, then added a care manager, then had to switch agencies when my father went onto community Medicaid, then had to get the private caregiver onto the new agency's roster so she could continue on the case. While there were problems with some of the individual caregivers, there weren't many conflicts about who was in charge. I found that if I made it clear that I was the person in authority, and that the care manager was my representative, they understood and followed direction. The conflicts we had would have happened anyway - they were within agencies, not between agencies.

Long way of saying that you guys might really want to think about expanding the ranks. If resources allow, hiring a care manager to pull it all together can be very effective.

Nobody can sustain an unbroken run of AD care - everybody needs relief.


Best,
Alan

Barb, in addition to the wonderful support on this site, you might also like to check out a site specifically for spouses/partners of people with Alz and other dementias.

Many of the folks there share your feelings.

It's at:

http://www.TheAlzheimerSpouse.com

The message board links are on the left.

Barb, Another option for you is to think about participating in caregiver forum chat room. There are caregiver's online every evening after 8 or 9 pm..All are welcome. It is talking to people in a different way, but certainly connecting in real time.

Alan A.

i just want to say how very much i agree with your statement about the fairy tale version of AD patient..docile patient and selfless care-giver..don't happen..I almost never get away for any "me" time. My DO does not have a temper most of the time, but it is the repeating, repeating, and the "going Home' that drives me up a wall sometime..

You all are great. I have dropped in on the spouse site and it is a help too. I have been checking out different sites all afternoon. I am going to call his sis tomorrow and ask her for a couple of days off,Oh I talked with the longterm care rep today and found out they will cover only until 2012. I did not know dh had signed up for longterm disability ins-not longterm care ins. Oh well, could be worse,we could have NOT had the longterm disability at all.

I think you may need to give yourself permission to look into other care options such as a nursing home.

You may want to start planning and talk to an elder care attorney. No one should have to live this way...you deserve some freedom to enjoy your life and caregiving may someday hurt your own good health.

If you are so miserable, this can't be good for anyone in the long run.