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 Just hang on! 
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Dinny,

Thanks for your support. It certainly is welcome! This is such a thankless job...except inside I know I am doing what my LO would want and that hopefully will carry me through. Tough at times thought...and getting tougher. I pray I can see this through to the end.
Don't ever think your LBD problems are not as hard as anyone elses. This is a hard journey from beginning to end. Your LBD problems are just as great. Might be in a different way at this time but just as important. Hang in there and stay strong.

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Dianne C.


Thu Aug 20, 2009 11:58 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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mm- Thanks for the good advice...it helps...it all helps. I don't know what I expected it to be like but it is certainly more sad than I thought it would be. Tears that I thought I had shed so many times there would be none left to spill...now overflow at times for no reason...like now. Relating to all you have gone through in recent weeks yet you have the strength to support the rest of us.

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Dianne C.


Fri Aug 21, 2009 10:41 am
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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one of the gifts we have is to be guides for those who will follow us. I never thought when Tim died that I would grow and be able to reach out and share in order to help. The grace from God will help you- day by day and not always as you expect.
Have courage my friend
Sharon

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syt


Fri Aug 21, 2009 11:21 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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It has been 4 yrs since Jim passed and I also during the illness thought I would walk away from LBD as fast as I could then I realized, I could put to use all that I learned over the yrs that we dealt with LBD,The way I look at it is, if I could ease just one person's mind while they are dealing with it then it is what I need to do, if I could just help one person from the torment I went through in the very beginning than it is well worth it, I speak to many new caregivers via telephone, it is unbelieveable how thankful they are ! So to me it is what I was meant to do! Maybe one day I will walk away from it but I do not see that happening any time too soon!

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Irene Selak


Fri Aug 21, 2009 4:13 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post 
You ladies are just tooooo incredible....totally amazing! Just reading the posts of support are getting me through this terribly sad phase of life.

I met Irene one night when I called in...nowhere to turn, totally ready to break, didn't know how to handle my LO..you got me through it that evening and on to this site...I will never forget you for it....ever.

MM...what can one say other than you are one super, wonderful, incredible person. Here you are sharing, helping us and others when the love of your life has just left this world. You are truly amazing and strong. Another friend forever.

Sharon...you are a gift and treat to all of us. Loosing Tim, taking care of your mother, supporting us...caring for everyone. The support and advice you offer have seen many of us through the pain of LBD. Friend forever.

To those who have been sending me messages of support, Robin, Renata, Dee, Sofia, Lori, Doris, etc. I thank each of you...this is a true sisterhood. All friends forever.

And to all of you not named...I do think many of us will remain friends...a close bond has been formed. After all, how many other friends do you have that you can discuss wee, poo and other personal issues with? Never in my life would I have thought of discussing some of the things we did...and we did it in a manner that was frank, stark and with humor.
Have a good evening friends. I will thank you all in my prayers.

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Dianne C.


Fri Aug 21, 2009 10:42 pm
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Joined: Tue Oct 16, 2007 11:27 pm
Posts: 84
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I just want to share with all of you what has been happening with John. :cry: Since there was a major decline in his health and he threatened a care giver at the Adult Center I knew it was time to get him checked out to see if there was something going on medical. I got him admitted into the VA hospital on Tuesday, believe me they didn't want to keep him but I explained to them that he was a danger to himself, and they finally agreed to admit him to the Phyc ward. I told them I wanted to know if it was medical of physcotic. They ran blood and urine test did chest x-rays and all checked out ok. They increased his Seriquil to 75mg so when I saw him a day later he was slumped over and really out of it, so they lowered his Seriquil to 50mg. They said he seemed to straighten up and was more with it, but then Friday night he hit a nurse and then tried to run away and fell. So they did x-rays and gave him Benadril to calm him down. When I went up today he is totally slumped over, very much out of it. If I told one doctor I told them all, please, please watch what you give him, any medication because of his condition of Lewy Bodies can be very harmful to him. I will be calling his Doctor tomorrow. The one thing I will say is that they are taking really good care of him, they have a one on one nurse with him, they make sure he gets food and liquids, but its just awful to see him in the slumped over state but he seems content. It just seems to get better and better with this terrible disease.

B


Sun Aug 23, 2009 5:31 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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B Myers -
Benadryl??! Good heavens, what are these people thinking?! Benadryl is an anticholinergic. It's a no-no for people with LBD.
Robin


Sun Aug 23, 2009 6:52 pm
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Joined: Tue Oct 16, 2007 11:27 pm
Posts: 84
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Robin,

I will be on the phone with the hospital tomorrow, I wouldn't mind if I didn't keep telling them he cannot have anticolenergenic meds.

B


Sun Aug 23, 2009 7:04 pm
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Joined: Tue Oct 16, 2007 11:27 pm
Posts: 84
Post 
Robin,

I decided to call the nursing station and told them to make sure that no Benadril was given to him tonight. The nurse would alert his nurse but I don't think he was scheduled to have more, they just used it to calm him down. So then I e-mailed the Social Worker on the floor and sent her the page from the Boeve continuum and told her to make sure that the Doctor got a copy of it and to please make sure they check all the meds they give him. I wouldn't mind but I have been singing this song to them since he was admitted.

B


Sun Aug 23, 2009 9:00 pm
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Joined: Tue Oct 16, 2007 11:27 pm
Posts: 84
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I have still been reading the forum daily but haven't had the time to update how John in doing. He was having a bad time in the VA hospital after they had increased his Seriquil to 75MG and then gave him the benidril. I requested a Neuroligist to check on him, one that treated him 2 years ago, since he was the one who said he had Lewy Bodies. He had them titer down the Seriquil to 40mg, then 12.5 twice a day said no Benidril at all. The bottom line is that he was in the hospital for 2 1/2 weeks, they couldn'gt get him to PT because his head was down to his knees, then when he did straighten up a bit they worked range of motion on his arms. They wanted him out of the hospital asap, because they could do no more for him. I had him transferred to a very small nurshing home that is just 5 miles from my house, takes 10 minutes to get too. Its not a fancy place, only has 45 patients, the staff is from the area, and very caring. They took him on Saturday, they were amazed at the way he was recieved, all stiff and curled up. I met with the Doctor yesterday, he cut his Seriquil back to 12.5, started him on PT. I like the Doctor, he goes to the NH several times during the week, he is also aware of Lewy Bodies. This morning when I went there, they had him fully dressed and in PT, walking the bar rails, they have him sitting up in a wheel chair, I'm not sure if he was totally able to recognize me, but he was not slouched over and was able to walk on the rails. Like I said this is a very small nursing home, a lot of people would steer clear of it, because it is so old and looks out dated compared to the new ones out there. As long as they treat him good and are caring and nice to him, at this point I am happy. :lol:

B


Mon Sep 07, 2009 4:21 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
B,
So glad you were able to get him moved and you are happy with the place and the care he is getting, having a Dr who knows LBD is another plus, I hope things get better !

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Irene Selak


Mon Sep 07, 2009 5:21 pm
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Joined: Sun Mar 01, 2009 6:48 pm
Posts: 11
Post Just Hang On
Hi to all you wonderful people.

I will pick my husband up from a weeks respite in the Nursing Home tomorrow. Can anyone explain to me why in my husbands case he seems relatively well when he is in the Nursing Home.
When he comes home things go downwards again. I have excellent care for him at home, 3 fantastic carers sharing the days and nights along with me and my 2 sons at the weekends.
At home he calls out for 4/5 hours in the night, we stay awake with him. We are up all night with him, the Nursing Home tell me it is not so bad in there. I think it has something to do with not feeling challenged to appear normal , the nurses love him, he is still a very charming man despite his bad moments, he always apologises, when he has been irritable.Ray has PD and LBD. His legs are now becoming very weak, and he is loosing his balance, so we daren't leave him for a moment. Leg tremors have increased which leads to great agitation/halluciantions. I am trying to promote the idea of a wheelchair, and I think he is coming around to the idea. My dilema with Ray is, that the 24 hour nursing he requires at home, is no longer feasible, he cannot dress, wash, or deal with the toilet, everything must be done for him, and yet he appears very lucid and sharpe most of the time. The costs are also enormus for home care, and I work to help pay for it. All the family, and all the support people I have say I must put him in the Nursing Home, there is one close to our home which is highly recommended. I am at breaking point, I feel the disease is taking over my mind, I know I cannot go on, there are nights that I can feel my heart beating so hard that it frightens me. I am 63, Ray is 73. Any thoughts/advice from anyone I would be most grateful for.
I have asked the Neurologist to reduce Serequel to 75mg, I have tried Melatonin (no help) Neuro has put him on sleeping tablet Zimaphane 3.5 mg at night, seemed to help, it is fast acting and does not stay in the system,

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Polly


Mon Sep 07, 2009 9:33 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Polly --

I am so sorry for your stress. As for sleeping, has the doctor tried putting him on clonazepam?

Now to the real issue ... what is stopping you from placing him in the nursing home's care? You did not mention that he was upset by the week of respite care -- would he be opposed to the move? If not, is it your own irrational "guilt" that is causing you such torment over this decision?

My dear, you are no good to anyone if you are in pain, over-stressed, over-tired, and overwhelmed.

You're in my thoughts and prayers as you struggle with this decision.

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Renata (and Jerome-in-Heaven)


Tue Sep 08, 2009 12:19 am
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Joined: Sat Mar 28, 2009 6:01 pm
Posts: 101
Post 
Polly,

It seems as if the respite period was insufficient for you to restore your own health and peace of mind. What is holding you back from placing him where he can receive good care, and you can start to regain your health? You will be a better caregiver to him that way. Just because someone is in a nursing home doesn't mean that the responsibility you have for his care changes. What will change is that you will enjoy your time with him, appreciate the fact that he still makes astute comments, and know that when you leave him, he will be in good hands. Especially if you have to work to support the expenses of care, whether it be in the home or the nursing home, placement will make that more feasible.

My husband's needs now are very similar to yours, and everyone I know has said that this phase is very, very difficult for us. I too have struggled with taking time for myself and getting enough help, but I realize that if I neglect myself, it undermines my ability to help my husband through this terrible sickness. So I am writing this as much for myself as for you, and I thank you for the opportunity to share our burdens and to try to renew our commitments to doing our best.

Doris


Tue Sep 08, 2009 1:37 am
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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,
What about leaving your husband at the nursing home, since he appears to thrive there? Please do not take this situation as an affront to your caregiving abilities.
Robin


Tue Sep 08, 2009 9:46 am
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