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OMG Beth-nothing will ever diminish your brilliant and shining spirit! They all had the tissue tucked under their bra straps doncha know! I can not even imagine how difficult it is for you to research your new nest...oh, wish I could be there and help...where are you looking? May be I could do some online sleuthing for you? hugs to you bright star!
 
Don't know why they were staring Beth! LOL I've seen walking zombies in nursing homes! Assisted Living Facilities also have a variety of wonderful characters. My Mom was in an AL facility and they have assigned seats for "dining." Seems the men sit at different tables than the women (surely not in your case though). A guy took a shine to my Mom and came over to speak to her. Another woman got jealous and caused a scene, declaring my Mom was in the wrong seat! They had to take the woman away to her room.

It's a very interesting dynamic in such places and I hope you truly find a good one for you and your husband!
 
As usual, Beth, you are doing more than an army of soldiers. Sweetie, your example of strength and patience and your courage and endurance, puts me to shame........ and I almost jumped in my car and came to you. A few choice three and four lettered words came to mind as I have read your posts..... and I'm not one to swear.

Long have gone the days where you got a backrub and a thorough bedbath daily in the hospitals........anywhere. Talk to anyone who has had a hospital stay and you'll hear grief. I think we must avoid doctors and hospitals at all cost.

My sister died on Dec. 5th in her last stages of leukemia. Neither the GP, the oncologist, nor the hospital staff would authorize hospice for her at home. She was discharged from the hospital without help, and didn't even send her home on oxygen when she had it on 4 litres there. They said she was fine and in remission. Less than a week later she had two strokes and went into respiratory failure. Finally she got hospice and they cried (literally) about her condition and what we were dealing with.

We were given a rickety bed. No one knew how to get a catheter into her, and we were scheduled for outpatient appointments yet! Thank hospice for finally making available the morphine and other meds to give her comfort in her last days. Her husband was in denial that she was even failing because of the doctor's reports to the contrary. It was difficult dealing with his emotions.

I knew that her dry cough indicated congestive heart failure or blood clots. She had both. She was also bleeding internally from the bone marrow failure to produce platelets etc. We as amater caregivers knew more than the doctors I guess (We also had the internet to search information on.)

There's more I could tell, but I won't bother. You get the picture.

I guess we must try to count our blessings where we can find them.... the equipment we do have and for the people who know what they are doing.

Rick recently had a swallow test and was told that he could swallow fine but that there are spasms going on. It was recommended that he take a muscle relaxer... yeah right, give an ALS patient who is on a bipap with low diaphragm function muscle relaxers. I know better than that!

Oh, and the technician said he doesn't think Rick has ALS or he would be gone by now. He thinks it is likely Parkinson's... and we know he doesn't lack dopeamine(sp) and the symptoms are far away from that.

Oh boy life is great is you can bear to live it! Bless you Beth!
 
Marjorie, I'm so sorry about the loss of your sister. That sad story is SO typical of what our medical system has come to. Thank heavens for hospice (when you can get it in time), and the care and understanding they provide.

I know your's sister's experiences make her death even harder to bear, but she is at peace. I hope you and Rick have many blessings in 2010. He is certainly blessed to have you ...
 
Marjorie, I'd like to echo Beth's sentiments.

I'm sorry you lost your sister and for the incompetent doctors you had to endure. I hope you can find a good doctor for Rick; one that is smart enough to properly diagnose him!

Kim
 
I SO wish we could create a village where we could all live close, surrounded by people we love and with our own special hospital and hospice staffed by people who know what they are doing and CARE.
It is beyond appalling that you have had to suffer incompetence and lack of care on top of the illnesses themselves.
I send love
Irismarie
 
I believe they did have villages as you suggest. They were called leper colonies. I think we're better off the way things are. The quality of some doctors makes me sick. When you get one, make a complaint. They might not do much but it might make you feel better.

AL.
 
Well, there is a guy that has created such a village in Boston, Mass! His name is Steve Saling and he has ALS! This is a well planned "village" that will accommodate pALS that have no one to care for them. It's high tech - state of the art. He is a landscape architect and his specialty was handicap compliant cityscapes. (Hope I got that right) My husband and I met him back in 2007. He was so very inspirational in our time of need.

Unfortunately it takes a lot of money and much effort to cut through all the red tape for one of these facilities. But I am so happy that some pALS will be able to take advantage of Steve's vision! He is trying to go for more centers in other states. I haven't kept up with it, but you can google his name and I'm sure you will find more info if you like.
 
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