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 Excruciating Anxiety 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Polly,
Wonderful news! Congratulations on your fine work!
Robin


Mon Nov 09, 2009 5:10 pm
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Joined: Sat Jan 31, 2009 7:21 pm
Posts: 172
Location: Ohio
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Polly: what good news. And as you well know, it's not often we hear good news in this community. It's so good to hear that this has turned out so well for you. And on some level your DH may also realize that this is good for both of you & especially eases things for you. You've done so well by him. Dee


Mon Nov 09, 2009 5:52 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Reading todays posts about success at the nursing home and feeding tubes, validates life is not simple anymore. Frank is still at the rehab/NH and can walk a little but doesn't want to. Out of the last 9 meals he has refused 6 of them. I left early tonight when he wouldn't touch his dinner so maybe the staff got him to eat. It does seem like he has given up, but physically he is very healthy, so I just don't know. We have a meeting tomorrow to see what everyone thinks. He does have a DNR but I don't know what that would extend to. Today, Life stinks.
Take Care,
Gerry


Mon Nov 09, 2009 8:45 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Gerry -

DNR is for resuscitation only, or CPR. Additional options are: DNH (hospitalize) and DNI (intubation).

Do you have hospice helping you?

I know of several in our local support group who decide they've had enough, and just stop eating/drinking.

Robin


Mon Nov 09, 2009 9:42 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Robin, Thank you for the fast reply. Can you or will they just stop trying to force him to eat. Our PCP said he "activated"? the Health Care Proxy for Frank, so I will be making all the decisions. He doesn't talk to anyone so I just don't know what he's thinking, if anything. Do you know if the rehab legally has to give him fluid by IV? Who knows, maybe tomorrow he'll be a different person. Thanks again,
Take Care,
Gerry


Mon Nov 09, 2009 9:59 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Gerry,
This is one of the reasons I recommend you get hospice involved right away. When hospice is involved, they are then managing Frank's care, not the facility. Hospice will do what the healthcare proxy orders. First thing tomorrow, ask the social worker or the patient care coordinator (on the NH side, not on the rehab side) what hospice organizations they will allow to enter their facility.
Robin


Mon Nov 09, 2009 10:10 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Polly,
So glad to hear things are working out for you and Ray. I do believe you hit it right on the head: they need a stability, routine, no challenges. It is a more simple way of life for them. You stood up to the challenge, addressed what needed to be done and followed through. You and Ray are both benefiting from it. Hugs to both of you.

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Dianne C.


Tue Nov 10, 2009 1:20 am
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Joined: Fri Jun 26, 2009 9:39 pm
Posts: 92
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Just a quick comment on the not wanting to walk bit. Johnny was more cognitive yesterday and said his feet felt so heavy he could hardly walk. He can walk a mile or so, but it's such an effort and I think one really has to have the will to do it, in spite of the lack of energy. He also verbalized that his gut hurt, and I'm wondering if that is part of the illness or something going on. He didn't pee all day long, but voided overnight. He does most of his peeing at night. He hardly talks and never complains of pain. Nothing today, just sleepy.

Polly---So glad things are working out for you. I can't go there yet. Too soon, I guess.

Judy


Wed Nov 11, 2009 2:14 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Judy - I highly suggest you have the drs. run a cat scan to see if there is something else going on. If his stomach hurts and he is having a problem urinating sounds like it needs investigating.

Gerry - Hopefully life is better for you today. I am wondering if Frank can walk without pain or if pain is being masked by the dementia. When my LO was in rehab (where the staff doctor discovered he had cancer too) he tried to walk but simply could not. After they found the cancer they said it was possible that he had been in pain but the dementia masked the pain and was exhibited in various other ways i.e., anger, agitation,etc. Have them check him out thoroughly. Hospice may be a good option for both of you.

While we try to see to it that our LOs are getting the best of care, sometimes the drs. just don't find additional problems as they are so focused on the dementia/parkinsons/lbd etc. so we must push to keep searching.

Hugs to both of you for doing such a great job.

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Dianne C.


Wed Nov 11, 2009 4:45 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
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Dianne, Frank is still in rehab/NH and he can walk with aid, but has trouble getting up. The PT people are coming to the house tomorrow to see if Frank can get around and make suggestion. I will bring Frank home and then return him, if all goes well, he'll come home Sat. AM. He sleeps most of the time, when he comes alive PT grabs him to exercise but there is so much going on there he is preoccupied watching everything else. I'm hoping he improves some when he returns home because right now, he is out of it. Can't remember 5 mins ago. I stay there 9-10 hrs and when I go to bed alone, I start thinking about the loved ones lost over the last several months, how lonely it must be.
Take Care,
Gerry


Wed Nov 11, 2009 8:49 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hopefully they will be able to help you work things out. Don't know how to put this delicately but do you think he is getting towards the end? Those last few weeks, my LO couldn't walk anymore, slept all the time, memory faded. I do have to admit that at times it is lonely...like I want to tell him something...but he isn't here. Most of the time I am so busy doing things that were put on the side for so long that I don't have a lot of time to feel lonesome. It has helped having my son here a good share of the time. It made the transition go more smoothly. Went through a period I could not sleep..guess we just got used to it..all of those sleepless nights. I thought I could sleep for weeks I was so tired...then when he was gone and I could..well, thats when I couldn't sleep. I still feel tired and its over 2 months now.
Keep up the good work...just do your best...its a tough journey you are on. I guess when I learned to accept the end was coming...it made things more peaceful.
Will keep you both in my thoughts and prayers.

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Dianne C.


Thu Nov 12, 2009 2:15 am
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Joined: Mon Oct 05, 2009 12:30 pm
Posts: 17
Location: Philadelphia
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Have just rejoined the forum after some time away.

Sorry for Gerry's situation, things look better for Polly. Polly's success with a facility seems encouraging, but I still can't see that for us. My mother continues terrified of contact with others.She only wants family and often begs us to get for her long deceased family members such as her mother. Polly notes that her husband had very hard times at home "with hallucinations, panic attacks, anxiety." This is our situation 24 hours per day, with only occasional breaks when she becomes absorbed in irrational tangents.

Our mother's longing for family has always been part of her make-up. She was never good alone, and always preferred husband, children, and some other close family members to friends and acquaintances. While she was not terrified of others previously, her current state (an exaggeration of her desire for family only, plus terror of others and excruciating anxiety over her illness and deficits) makes it seem doubtful she would thrive in a nursing home. She suffers all the time now as well, but I think to the degree there is any comfort, it is provided by my brother and things familiar. That would be yanked away by a nursing home.

I am pleased to see things have improved for Polly, but I suspect there is something different in the essential make-up of her loved one and ours that make a nursing home the answer in one case and not in another.

Thanks, Perry


Sun Nov 22, 2009 1:29 pm
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Joined: Fri Jun 26, 2009 9:39 pm
Posts: 92
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Dianne,
Sorry to be so late in replying to your suggestions. I had talked to the Dr. about his urination, and he wasn't concerned. He said it had to do with his heart being above his feet, so when he lays down out it comes. And the gut thing? All gone by the next day. We had started Quetiapine at night and I wondered if that might have affected him initially. Next time I asked him if he hurt, he said the soap was hurting him. "Your eyes?" "The soap won't let me talk." He is so funny sometimes. The other night he was saying he needed to put this copper wire all around the world. I told him we had someone coming the next day to help us with that, so... Of course, it was all forgotten the next day. Isn't life fun?
Thank you for staying with us!!!
Judy


Mon Nov 23, 2009 5:34 pm
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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Gerry
just a thought on his movement. for Mother the Parkinson part of her LBD is quite active- according to her neurologist the problem with initiation of movement is very common- with her if I stand her up she can walk a few steps with me (she used to love to walk and could go a couple of miles)
Sharon

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syt


Wed Nov 25, 2009 10:10 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Sharon, Thank you for your thoughts, we never know what will work for others. Once Frank got home, he improved daily, physically, he seems to have lost a bit more mentally. We have been walking for 1 - 1 1/2 mile each day, we're making that a prioity. I don't know if it was the strange surroundings or the meds or ??????, but I kept saying he just needs to get home and he'll do better. I was keeping my fingers crossed because I knew I'd never be able to take care of him in that state. So we're back on track, for the moment.

EVERYONE, have a wonderful Thanksgiving, I know it will be difficult for those who have recently lost their loved ones.

Take Care,
Gerry


Wed Nov 25, 2009 12:41 pm
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