Kat51, I know what you're going through.

When my mother got dementia and could no longer live alone, I, to had to handle everything on my own. Maybe my brother couldn't handle the thought of her not being our "Mom" anymore, maybe he's just self-centered. I don't know. But every Sunday I would drive her 45 miles to church, go to her house and clean it out for an hour, then go back to the church and get her and drive the 45 miles back to our house. My brother visited her once at our house and twice at the nursing home. He said he couldn't babysit her because he was too busy, etc. etc.

I, too, had to arrange for the burial trust, pay her bills, arrange for adult day care and eventually a nursing home. My husband was wonderful -- and thank God we didn't have the grandchildren then or I would have completely lost it!!!!

I do have a question, though: Your father's deterioration seems to be so rapid that expensive memory care may not be appropriate. Have you had a second opinion? Does he have Alzheimer's or some other type of dementia? Would memory care help, or is he too far gone? There's really little they can do to recapture memory in advanced stages of dementia.

The Catch-22 is that you don't qualify for certain funding unless you have Alzheimer's, so that's what they put on the forms. We were never sure if my mother had Alzheimer's or vascular dementia. Sometimes the symptoms are the same, and she had several TIA's before her memory went.

Here's what I did: I immediately began to find the best nursing home close to our house. They have so many Medicaid beds, and will put you on a waiting list. It took us about six months before we got the call, and my mom ended up in a wonderful, caring, clean place for her last year.

The final kicker was when she died. My brother accused me of taking "all of her money" when in fact, he had borrowed virtually every cent before she came to live with us! He demanded that I pay for her funeral, and her trust didn't cover the whole thing, so I had to take out a loan. It was AWFUL!!!!

We didn't speak to each other at her funeral or for a year after, and my mom didn't deserve that disrespect, but that's the way it often happens.

I'll say many prayers for you, because this is a terrible situation, and I know how alone you must feel. Not only because you're stuck with all the work but because you're also losing your father.

Sara, I'm so sorry about your mother and the way your brother treated you after you did everything to care for her.

Actually, the memory care facility is less expensive than a nursing home. The facility is not necessarily to improve memory. It is designed specifically for dementia patients for comfort and care. They are smaller than nursing homes so they are not as intimidating and confusing to dementia patients. They are more like large houses - usually about 14 - 20 bedrooms, a large living room, dining room, kitchen, and maybe a community room for gathering everyone for activities. One house even had a 'family room' with a large table and kitchen you can use for family gatherings like birthdays.

The bedrooms are private and you are encouraged to bring their own familiar furniture from home. The homes are designed in a square so there are no corridors to get lost in. The one I liked best also has a 'memory box' - large glass display case - outside each patient's door. Family is supposed to display items that pertain to their parent. For example, one woman liked to crochet so the family added a crochet hook, doily, and family pictures. Often when the patient is upset, the staff will lead them to the case and ask the patient to tell them about the items to distract them.

There a lots of activities specially designed to help with memory and outings like trips to parks and rides to see fall colors. The doors are alarmed to keep residents from wandering out an getting lost.

Memory care facilities also have more staff per patient and all staff has extra training specifically for dementia. As one director said (and my dad does do this) often dementia patients are nocturnal and wander around at night. In a nursing home, they are expected to be in their rooms at night. At a memory care facility, if the person is up during the night, that is not a problem. If they want someone to play cards with them at 2:00 a.m. or want a snack at 3:00 a.m., someone will play card with them or give them a snack. The staff is trained to not try to bring the demenita patient into our world, but instead to join their world - whatever that is at the moment - 1947 or 1999.

The cost of the nuring home my dad is at now is $6,000/month. The memory care base price is about $3,300/month plus the additional amount for care which depends on the level of care the person needs. Each care level adds about $500 to the cost. Currently, I think my dad would be level 2, so his cost would be $4,300 now but will increase as he worsens - highest level is 5. The highest level of care would be about the same as the nursing home is now.

I hope I can get him into the one I want because when I tourned it I saw a LOT of staff interacting with the residents and they seemed very caring. The person who did the tour has worked there for 38 years, another staff member for 25 years, etc. so they are long-term staff who are there because they like it not because it's the only job they can find for now.

That sounds like a wonderful concept! They didn't have those when my mom got sick, so this is a great step in the right direction.

I hope you can get your dad in there. I still wonder why he went "downhill" so fast?

I am wondering that, too. The neurologist at the memory clinic said it was not a stoke - MRI did show that much. It was blurry because he moved but the doc said he thought he saw enlarged areas that could indicate NPH. The only thing they could do is put in a shunt to remove the excess fluid but the surgery at his age is very dangerous and the swelling would have already destroyed brain cells so it would be pointless. The therapist said she's seen NPH go both ways - the person going downhill very quickly but occasionally she's seen them improve and there's no way to know if he will improve or not. Today was not good. He was angry, combative, and uncooperative. I had wanted to take him for a ride to the park but he was not in any condition to do that. I did get him to calm down and took him for a wheelchair ride outside to the courtyard and we visited pleasantly. He finally cooperated and let the CNA's change his feces-smeared clothing and he wanted to lay down in bed because he said his legs hurt. He was dozing off when I left.

It's just the saddest thing to see our parents like that, isn't it? I just don't know what else to say...except that I will pray for you to have strength to deal with it :-)

Thanks, Sara. I knew I could count on this group for support and prayers.

Kat
I'm sorry about your Dad, it is sad when we become our parents, parent. I am very lucky I do not have this issue in my family...yet.
I watched my Mom do it with my Grandma and it emotionally and physically drained her and that was with the 4 of us grandkids helping her out.
I have seen 80 year olds do very well with NPH shunt surgery, but it depends on well physically they were to begin with.
I'll keep you in my prayers and come here no matter what there is more to life than raising the grands and we often forget that we have to deal with life also.

Thanks, Ravensgma. Today was especially hard. I've been upset all week because tomorrow would have been my mother's 80th birthday so I've been greiving. Today my dad kept begging me to take him home, then he asked me where she was because he hadn't seen her there. He's forgotten that she's been gone more than 3 years now.

I'm wondering if you're missing a few things here. It might be too late, but I would check with a lawyer regarding placing the house in a trust for your brother with you as responsible party. If you could do that, the NH might not be able to touch it. It certainly w/be worth a try. There is also a consideration for having your dad in his home with caregivers for both him and your brother. I agree that programs they have today are wonderful but there is an emerging theory that the elderly are better off at home with care. Medicare w/partially take care of help coming in the home. Proper medication could calm your dad down. My mother was diagnosed with Dementia of the Alzheimer's type. She was hospitalized for bleeding ulcer's and while at the hospital, she also went downhill quickly. Within days, she was transferred to the dementia unit where she stayed until she died. I w/also recommend you try the 211 system which is going to be nationwide but is not available in all states. I have found that if you put 211 into your search you will be directed to services available. You can talk to someone there regarding your options. Clearly, you have your hands full and believe me, I understand. At one point, I had my disabled husband, my daughter with a brain tumor, her infant son, her idiot husband. My younger daughter graduated college and moved to Florida until my older daughter was put into hospice program. She came home to help me. My son did not want to be bothered and I had two dogs! I threatened to put a Red Roof sign on the front of my house! That was when I learned the true meaning of living one day at a time. Just wanted you to know you are not alone. I took care of a Huntington's patient when I worked in the hospital and it is a terrible disease. My heart goes out to you having to watch your mother and brother go through this. Be strong, my prayers are with you.

Thanks, Daisyduck. To be honest, my dad's 'home' is falling apart. It's a nearly 40-year-old 14 x 64 mobile home on an acre of land, he's tacked on a couple of porches and put a house-type roof over it. But it is terrible disrepair. The plumbing is bad, part of the floor is rotted out from leaking plumbing, electricity not working so great, most of the window cranks are stripped and don't open, etc. The only thing of any value is the land because I can't imagine anyone would want to live there and I'm not sure how in the world I will even be able to sell the place. If someone buys it for the land, they will need to deal with getting rid of the mobile home, porches, garage & rusty metal shed. They will also have a nearly 40-year-old well and septic system to build around.
I've been trying to convince my dad for the past couple of years to try to sell the place and move into a senior apartment building.

Dad is in such bad shape now that he would need 24-hour care. When I checked on the cost just to have someone stay with him from 9:00 p.m. until 11:00 a.m., it was $250 per day. That was not for a CNA - only someone to stay with him and they do no personal care or meds.

Dad has a doctor appointment tomorrow and I'm going to ask his doctor if he should see the psychiatrist my brother goes to. He might be better at using appropriate meds to help with his agitation. Dad's family doctor did not want to use anti-anxiety meds because my dad reacted to them badly - they made him so sedated he was unable to function at all, so he's trying a low dose of another med beginning tonight at bed time. I think it might take a bit of trial and error to find what works for him to feel calm and safe without being drugged into a stupor.

Understand your dilemma. You should look for psych doc who works with the elderly. There is a drug that my mom took that is for dementia. I can't remember the name (lol) but it began with an A and I heard it advertised on TV recently. It did help her. She also was a "sun downer" and became very anxious around sundown. She was given Zoloft for that and it helped a lot to reduce her anxiety. Meds are so important but the wrong diagnosis and rx can be devastating. I was on a task force for nursing home commission in our state and boy, did I see a lot! One thing I did and advised others to do was to visit at odd times. I w/stop in the morning, 10 minutes for visiting hours were over, etc just to let them know I w/be there. I was able to ascertain a lot of things about my mom's care by doing this. Nursing homes aren't bad but sometimes the people they hire need to be watched. I kept my mom there because I could not care for her at home and you are right that care in the home is expensive. I w/like to tell you though that I ran a nanny agency for 15 years and there were times when moms asked me to help get them someone to care for their parents. I had some wonderful ladies from other countries who were wonderful. Coordinating this with caseworkers and/or discharge planners who taught them how to move the patient and prevent falls, etc. They worked for $500/600 per week, usually cash. This was supplemented with trained nurses, aides, homemakers, etc from a Medicare licensed agency. Medicare does cover some of these visits and if you space them out in coordination with live in companion, you get more out of the benefits. I had male and female doctors from Europe who did this and they were very kind and capable. Please note that I'm not trying to tell you what to do in your situation but I'd like to share my experience with you if it will help. Again, take care. You have a lot on your shoulders.

Thanks for the tips, Daisyduck. One of the reasons I want to get Dad into the Memory Care facility is because I know people who work there and most of their staff are long-term. My friend has worked there 38 years, another 25 years, etc. And all staff have special training for dementia, the facility is small - only 15 beds, and has a high staff to resident ratio. I think Dad will get the best care there. Dad can have his own bed, dresser, table, television and chairs there and I think he'll be much more comfortable.

Sounds very interesting. I was surprised at how well my mom did I admitted her and it was nothing like what you're describing. She was still functioning fairly well when I admitted her. It became a problem with her wandering off and I just couldn't be there with everything else on my plate at the time. I was not happy with the dementia unit when she was transferred and wish they had a place like you are describing, but I guess things improve with time. I'm sure it will be less stressful for you knowing he is in good hands. Take care.