N1K2R3

Norene,

Thanks for the complements about my insights. This has made my day for I have spent most of it feeling stupid and fed up that my youngest son has enough to deal with given his ADHD, but then the incompetence adults he must deal with in his high school and his community college and universities (well known like Emory and UNC). Does anyone know or care to know how to do their jobs anymore. What a mess!!!!!

The illness is called PSP,and believe me I know and am a member of every support group thats out there! I even did all the research for the facility that she is in, as not even many doctors have but limited knowledge on this one, it is very very rare! but all I do know, everyone that is involved with mom now, has a clear understanding what its all about,,,,,,,,,,,,unfortunately there is no cure, it is not terminal,but falling and pnewmonia are the nujmber one cause of death, somehow I think mom thinks she is exempt from the seriousness and trickyness this desease causes..............Its cunning, baffling,and insidious, and extremely progressive,her food and the consistancy of it isalways changing,making it more and more difficult for her to swallow,where food and liquids get caught in the lungs because of going down the wrong pipes,and causing infections(pnewmonia),and the other thing thats so serious is the falling out of nowhere, apparently her brain is misfiring, and her mind registers that she can do way more physically than it can, they cant coincide with each other,and I think she believes that it wont or cant happen to her! it just creeps up, so does mom, I think alot out of reflex, she just cant help it, she is very impulsive,and just does things without thinking..............Believe me we have explained all this to her over and over with no results, I feel so depressed and helpless to do anything to help, it isnt even funny, I am totally getting to the point of not even wanting to get out of bed, which I cannot do, for my sake, her sake and my husbands sake,,,,,,,,,,,,,just totally taking a toll on me! and like they say "this too shall pass" and I know thats true!
thanxs again for your support, made me feel better to even explain and get some of this crap off my chest, as I think ot was startong to eat me alive!
thanks so much for your support, and just beng here to listen!!!
hugs from Sue

Great response.

Thanks for the hug, Verlaine!
Each day is glorious, as everyone complains about the heat, I love it. think back to last winter's cold.

It will be sooner rather than later - the responses/support I have received has been fantastic. My wife & I have already discussed how we will be changing and focusing on his time left without being distracted by the behaviour of others.
THANK YOU

I love reading the notes on " my wall". I empathize with so many of you. As I mentioned before, I am about the same age as many of your parents , except that I am in fairly good health. Changes come gradually. Necessary changes take place or should take place because of health reasons. For example, I now have to puree my food. UGH! I need to find a house on one level, a ranch, an apt., a condo or something with the master-on-main. I can no longer drive after dark. I must use the health aids that come with living, such as a potty seat/lift that sits on the commode/toilet, a small step ladder with handle bars, etc. When the time comes for me to leave and go onto an Assisted Living facility, I'll be ready to go without tears and without drama. Remember we all must go someday, and the time and place we know not. I am thankful for a glorious life (so far) and I welcome the changes that come before I leave for good.

I do agree with u about keeping parents home as long as possible, but in my situation, my mother has PSP, which is very rare and she has dysphasia, where she has to always have a speech therapist around to order throat studies and her food changes on a daily basis, example: she is on thicket which is a powder that has to go in all her liquids, she is on nectar consistancy and now has to have her meat grinded and cant have corn, or any nuts, she cannot drink wih a straw either,,,,,, she hates the stuff and resents the fact she cant eat or drink what she wants, but if she doesnt she will get pnewmonia from food and liquids getting caught in the lungs and then they will need to be drained by operation, this situation requires skilled care that I cannot offer at home, first of all we could never afford to do it as we would need companions, and speech therapists daily, she also coughs alto and drools which means he diet needs to be changed again and a new throat study needs to be done,,,,,,, it would never work with her at home as I would be scared to death of making mistakes, and not realizing things that I should..............I am very sad that she cant be home, but I bring her home regularly for a few hours alot,,,,,not during meal times, as I wouldnt be able to keep up with all the changes!!! its really hard to see her suffer through all this and not have dementia, if she did at least she wouldnt even be aware whats going on, but she is sound of mind, and that is sad and scary for her,,,,,, all I can do is make her comfy, bring her home, and bring the doggies to see her!!!! she loves that and so do the other patients, who end up keeping me there and I stay cause I enjoy making other people happy too that never get visits, and the majority in those placrs never get visitors, its so sad that people just dump off there parents and go on with thier lives like they dont exist anymore, and all they do is cry..................

I based my comment on my personal experience. My husband received the full amount of what was estimated on the value of the house, he shared that money with his sister
while I took care of my mother in law in that house. The reverse mortgage was with Fannie Mae Foundation. Check it out with them. Again, I say, the law can change from time to time. That was year 2000.

I know exactly what you're going thru N1K, as I went thru it 4 months ago with my 88 yr. old sister. She was further along in the disease than I ever imagined. I simply told her my nerves were getting very bad, and she did need to move to a place of her own. (a nursing home, but I didn't say it) She was infuriated with me, but I never spoke of it again, but went about my business looking for a place for her. She protested violently, but in the end a wonderful nurse from a home came for a visitation and revued her 3 times. She also took her to lunch and made a real friend to her, so my sister really trusted her. In the end the nurse even took her to the doctor for her entrance exam to the home (my sister doesn't believe in doctors). Also took her on a tour of the home, and introduced her to a lot of the staff, which made my sister feel very important. She even took her to lunch the day of the transfer to the home, while we took her clothes, etc. there. It couldn't have gone smoother. I had put myself under a lot of stress (and my family too) surrounding this issue. God does take care of us without a doubt, as he did once again. Now my sister thinks she has a job at the home, and they give her room and board:) After 3 months she's even getting a little more social. Physically she is OK, except for osteoarthritis in the back and dementia. It was really a miracle. Maybe you could just go visit a home on your own, as I did, and perhaps they can take it from there for you. There are wonderful, caring staff in these places.

cynical?