Lynn and Kate, you are both right. I just hate to ask but I know I need to get over that. The strain on myself is becoming more evident. Yesterday was the first day for inhome PT. the therapist asked me if I was going to be able to do this. My response was that I will for as long as possible. She is going to help get a social worker over to help me sort through what other benefits dad is entitled too and what other help I can get at home. Problem is that everything she offered dad to help him as far as safety he turned down. He was supposed to have a cat scan yesterday and refused to go. I had to reschedule. He said he was to tired after PT. So frustrating!

My husband has 2 siblings, one who lives 2 1/2 hours away and the other across the country. They did not help when I was 24/7 caretaker and they were the only relatives around--we have no children. I really needed them to come take care of their brother each for a week and a half while I had to leave the state on business. It also would hae saved us a bundle of $.

I went through several stages of asking, begging, trying to reason that this was their brother and that there was a short window of opportunity to have meaningful communication. I also tried to shame them into it, which point they got and were very annoyed with me, but it still didn't help. And these are people I considered compassionate and family oriented--I won't have the same close feeling about them again.

Soooo--rots of ruck.

Gail

People can be a source of pleasant surprise but are often a source of profound disappointment. I have learned not to depend too heavily on them. Nor do I judge them harshly. This is for purely selfish reasons--my own peace of mind, not because it affects them.

Exactly Pat. If we were to think about those who should/could have helped, we would become bitter and it would only hurt ourselves. Those people would be blissfully unaware, as they would be keeping their distance anyway. There were many people who said they would call in and visit Dad, (people who were 'good friends' of his some years ago - quick to let him buy them a drink)- they pass his front door every single day. I have had to hold my tongue on many occasions and given myself some strict lectures to ' let it go' - a saying I love is 'Let Go, Let God'.

Ger

I'm wondering why you are taking him for a cat scan. What would be the purpose? Would you put him through surgery if the scan showed something operable? Having our LOs go through testing if we know we wouldn't do anything different after knowing the results seems like it's putting them through a lot of stress for nothing. I'm wondering what the dr.'s reasoning is for recommending it. Lynn

Because he fell twice this week. He was complaining of headache and said he felt like his brain was swelling. I'm thinking if there is any danger, it would have happened already. Dr ordered the CT over phone.

So, what would be the purpose of doing it now? If I were you, I'd talk with the dr. about the necessity of this. I'd ask the dr. what s/he was looking for and what would be the treatment if the results were X, Y or Z. Then I'd figure out if putting my LO through the treatment is something I'd want to do at this point.
I'm hoping this is helpful and that you don't think I'm trying to bully or challenge you. It seems like our LOs get particularly stressed going through tests, and if they can avoid further testing, I'd be all for it if it were my LO. Lynn

My husband has a mass in his spleen, being watched for now. Even though he is on hospice (perhaps a little prematurely), I will have him cat scanned, x-rayed, or whatever they do, in 6 months. If it's cancer, I wouldn't do anything about it, but think that knowlege would be helpful in treating pain and other symptoms.

He now complains of pain in his back and has for some time. There are several things that could be causing it, but he is unable to describe what kind of pain or the exact location. They give him a Loritab before bed and when he wakes up in the middle of the night.

I wish the hospital had come up with a conclusive diagnosis for Dad. I really believe he has cancer, definitely of the prostate, and I also think these abdominal pains are from something else going on down there as well. The only test they did on him was the ultrasound, and then only when I fought like h*** to get it done. At least if he had been diagnosed with cancer, he would have been given proper pain relief instead of just plain paracetamol When we brought him home on Wednesday, his regular doctor prescribed oxycontin for him (a form of morphine), and thank God, since then he has had very little pain. Diagnosis may not just be for surgery, but to know exactly what pain relief to give.

Good point about testing for the sake of finding appropriate pain relief, Gail and Ger.

I definitely don't want to cause dad any undue stress or unnecessary testing. I'm just wondering what if there is something else going on too. I will speak to the dr at greater length. Dads headaches are pretty intense. Does anyone else have LOs with severe headaches? Is that just part of Lewy?

Hmmm Maybe new topic??

My dad had a bad headache once in a while, but then he'd had migraines a lot while I was growing up. He didn't seem to have many headaches, let alone migraines in his last years. Has your LO ever been diagnosed with migraine or any other seizure disorder? Lynn

No seizure disorder. Migraines I'm not sure about.

Hi. I'm not sure this will fit in with the thread of the posts, but I'm going by the title. Anyway, I finally got a CNA to come in twice a week. Primarily, to give me a break and to get Tom used to care from someone other than me. Also, to get established in our healthcare group insurance system. Bottom line--getting out is almost worse than just staying home When I make the turn into our subdivision this feeling of dread almost overwhelms me. Tom will be pacing the room waiting for me. He will not have taken his nap or been to the bathroom, so, the stress level will be very high. I really like his CNA, he's very quiet and reassuring, but so far that hasn't helped. Some days, I stay home while he's here just to avoid the stress of leaving. I know it sounds silly. I never had problems with getting sitters for our kids when they were little. But the repercussions of their anxiety didn't last hours either. I'm hoping his anxiety and mine will eventually lessen. I'm sure it will, when he no longer recognizes me as his wife--how sad. Any thoughts about the time being? Kathy