I am currently paying $12,000 for care at an alz. facility because of the 1-1 care my mom needs at this moment. She is very unsteady and falling, in a stage where she is losing the ability to use the bathroom but not quite ready to go in the depends so she is up and down all the time. She is also very weepy and wants to go home (Not entirely new but getting up to go if I won't take her)

I was hoping an adjustment to her meds would get us over this stage and she could stay in the alz. facility but have been looking at nursing homes just in case.

One I like the best (and I don't like it much) is about 10 miles away and has a small alz. unit of 17. It would be out of my way but still do-able to visit often.

The other is not a choice I would make normally because it is not an alz. facility and it is very "busy" and mom needs quiet and calm for her best interest. However it is 75 miles away but closer to my sister and brother. I could only visit once a week and I am so tired at this point the thought of the drive after my work week does not thrill me. Plus my brother and sister have been NO help for the past 2 1/2 years so I am afraid they won't follow through. However I have been doing everything and maybe it is time to just give up some of the control to them and take some stress off me.

Maybe having her so far away will stress me further--the thought of her being afraid just kills me. But then maybe my sister will step up. She doesnt work and has alot more time.

I don't know what to do.
1 leave her and hope the drugs start to help and she gets over this stage.
2 move her to a nursing home and visit her less often but still be her main caregiver.
3 move her far away and give up the role I have taken for the last 2 1/2 years and feel guiltier than ever

Please help me.

On the outset this might sound like a step backward, but here's my thought. What is your housing situation? It just so infuriates me that family pays "rent" at these Alz facilities, and is still expected to pay for one on one care on top of that. Unless the facility discounted the rate while you pay for one to one care. Your mom is only occupying a bed. She's not being given the benefit of their staff which should be the most expensive part of her rent.

Emotionally this is taking quite a toll on you. I see what you mean by damned if you do.....
I wonder if you might ease a bit of that at least in the short term by hiring an agency to do 24/7 at your home while you seek out the "longer term solution." That way, you're paying an agency fee and getting your Mom one to one attention, you can see her at all times, and that should help her to feel assured. Even if the agency cost 5 or 6 thousand for the 24/7, some place like that facility isn't getting an extra 5 or 6 thousand just for your Mom having a bed there.

Hi lostnow. Bless your heart! After reading this post and your earlier one, I can totally understand how you must be feeling! I think first, a meeting with the doc and DON of the facility where she is now is in order just to make certain that everyone is on the same page with your mom's care and treatment. Emphasize to them that you should be immediately alerted to changes in meds or condition and be sure they have MANY ways to contact you (fax, email, home phone, work phone, cell phone, etc.) when changes are noted. They should not be changing her meds without FIRST contacting you!

If after a reasonable amount of time her condition doesn't improve with the meds she's on, it may be time to have her evaluated by a different doc just to double-check the treatment choices that her current doc has selected.

Take it one step at a time and realize that working with "the system" is mighty tough and frustrating... the squeaky wheel gets the oil, so keep up your hard work on her behalf.

If there are aspects of your mom's care that your sibs can help with, by all means, try to involve them and take some of the load off you; but it's hard to get sibs to work together on the subject of care and treatment. Sometimes, it makes things more confusing to have more people pulling in different directions, especially if they have not been involved and don't understand.

Hang in there and be GOOD to yourself during this stressful time!

Is it just me or does $12,000 sound "gia-normus?"

I pay $3700 for a beautiful board and care with 6 people (very quiet) and 24 hour care. The caregivers live there so not a lot of activity. Maybe you could find something like that close to you.

My dad's got a catheter and uses diapers because he's too heavy to lift onto the toilet.

My thought is you use the AZ Assoc referral services. That's how I found my dad's B&C.

As far as your sibs helping? If they have not stepped up yet, don't hold out hope. My youngest brother does "nothing" but expects my dad's money when he kicks. My older brother does what he can with dad's house but he's working long hours and pretty tired. He will help when I need things done, but I hate to ask him because he's working so hard right now.

I'm trying to make things easier on me. Dad can't walk and is in a wheelchair so I'm looking for a van to purchase. Even if I only need it for a few years, it will be worth it. I can't take the county bus system anymore. They are "government" workers, and need I say more? Orange County Access is either very "late" or very "early" and to just go to the doctors takes 5-6 hours of milk runs while they drop off other riders. It's too hard on dad and way to hard on me.

Anyways, I divert.

Do what makes it easier for you, but check out those prices. That sounds insane, unless it's a hospital setting, or extended medical facility. IMO.

Before I placed my Mom into ALF,,,I checked every and all places,,,from umpteen ALF,,to Board and Care,,,ugh!

I was hoping that I could find a nice B&C home for her,,cause I felt it would present such calmness and family atmosphere,,but I swear to God,,all of the B&C's I looked at were awful,,I cant even believe that the state actually gave them a license to take people with dementia.

The one B&C I found that was up to "MY" standards,,well heck,,they wanted even more per month than the ALF.

So,,,Mom is in a really nice smaller ALF,,only 14 to 16 residents,,very homey atmosphere,,the aides and nurses are wonderful,(for the most part,,just one aide I'm not fond of),,they treat the residents like family.

I took Mom out today for lunch,then we went downtown shopping and stopped and had Gelato,,,just really nice,,then off to buy some more flowers for me to plant here at my house. (Someone stop me with the flowers,I'm getting out of control!)

I took Mom back to ALF,,,and the aides we changing shifts,,,came up and hugged Mom and asked her where she had been,,did she have a good time,,I really like that ALF,,and its only 5 minutes from my house.

Now all I have to do is try to find a job this fall so that I can contribute to Mom being able to stay there,,as her cash will be gone with in the next year! Peace

The alz. ALF is $3875 and I have hired 1-1 care from 7am to 7pm 6 days a week (4000 for 2 weeks) and I am doing my day off--Sunday and I get there by 7pm in the evening and sit with her until she goes to bed about 9 and I make sure she is good and asleep before I leave. This morning she got up out of bed at 6 and fell so I will have to have someone there earlier to cover that. It costs $26 and hour and time and a half on holidays and weekends for the agency I have hired. They don't have to be CNA's and in fact will not provide any assistance such as lifting or toileting since she is already in a facility. The sitter just calls someone to do those things.

I could hire someone on my own but I have to set up a payroll through an accountant and I am not unwilling to that but I don't have alot of time and energy to hire someone and since I needed someone on short notice I had to go the agency route. The ALF said they had no one extra and could not provide any one to sit with her as they have 2 other 1-1 patients and were usuing all the extra help for that.

I have looked at B&C but found them to be just not right for my mom and they were doubtful they would accept her because she is a fall risk and has to be watched so closely. A regular nursing home is doubtful to take her because of the alz. and the fall risk but I did find one that has a small alz.unit within the nursing home and felt they could PROBABLY take her. She is very upset around crowds and doesn't even like more that 2 people around and she starts freaking out. She will not and never has enjoyed any of the social gatherings at the ALF. Mostly stays in her room. Is scared of everything and everything.Risperdal helped with that for the past 2 1/2 years but now she has such difficulty walking and still has the fears so now we are trying a diff. drug but it is not working yet and I honestly believe that it may not and it is the progression of the disease.

Did you call the AZ Assoc for referrals? I found them very helpful. I know I sound like a broken record but without them, I would not have found dad's B & C.

Dad's caregivers live there, so there is no staff changes. This is very good for AZ patients. I don't spend much time there anymore, because they have lots of visitors. They have music therapy and art therapy. He has a nurse twice a week, too. They do Bible studies, too. Dad got a new caregiver about two weeks ago and he's a wonderful young man. Dad is the only male so he gets the royal treatment. I'm so blessed to have this place. The owner goes to Saddleback Church, my church, and I actually knew him because he did a financial class that I took a few years ago! Small world. He does not generally use the AZ referral group but they "happened to call" that day. This is a "God thing." We've been praying so much for him. Not only was he led to this place, but he accepted the Lord there. He was not much of a believer so I know he won't be "whole" on this earth but he will be glorified in Heaven.

I am so sorry for those of you who do not have dad's situation. I can only give the glory to God. It is almost surreal.

But I am alone. I am his primary contact and I do a lot for him on the side, including doctor appts, ordering medications, supplies (like diapers)., and his financials. Dad was a big man in the government...and he had his own business and was offered jobs in China and everywhere else--he could name his price. But, alas, he got sick. But he has financial resources and that is another blessing. Tho he did not manage his money very well when he was sick, it is now being well tended.

A long and winding road...