View unanswered posts | View active topics It is currently Wed Nov 26, 2014 10:47 pm



Reply to topic  [ 37 posts ]  Go to page Previous  1, 2, 3  Next
 What happened to me? 
Author Message

Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: What happened to me?
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!


Fri Jul 29, 2011 9:35 am
Profile

Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: What happened to me?
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


Fri Jul 29, 2011 11:37 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: What happened to me?
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. :P

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Jul 29, 2011 11:51 am
Profile

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: What happened to me?
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

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Fri Jul 29, 2011 1:15 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: What happened to me?
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

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jul 29, 2011 1:28 pm
Profile

Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: What happened to me?
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.


Fri Jul 29, 2011 1:44 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: What happened to me?
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

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jul 29, 2011 2:00 pm
Profile

Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: What happened to me?
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.


Fri Jul 29, 2011 7:13 pm
Profile

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: What happened to me?
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 :evil: 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.

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Fri Jul 29, 2011 8:12 pm
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: What happened to me?
Good point about testing for the sake of finding appropriate pain relief, Gail and Ger.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Jul 29, 2011 9:36 pm
Profile

Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: What happened to me?
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?


Fri Jul 29, 2011 10:21 pm
Profile

Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: What happened to me?
Hmmm Maybe new topic??


Fri Jul 29, 2011 10:22 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: What happened to me?
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

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jul 29, 2011 10:24 pm
Profile

Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: What happened to me?
No seizure disorder. Migraines I'm not sure about.


Fri Jul 29, 2011 10:38 pm
Profile

Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: What happened to me?
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 :cry: 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

_________________
Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Mon Aug 01, 2011 9:27 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 37 posts ]  Go to page Previous  1, 2, 3  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr