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Joined: Tue Jan 27, 2009 12:17 pm
Posts: 3
Location: england
Post Hello.
My mum was diagnosed with LBD 4 years ago. She is now in a residential carehome in my town in England. The first couple of years life for her was not too bad, she could do the every day things.
Now we are in the 4th year of this terrible disease and since Christmas she has gone down the hill. The carehome Manager phoned me last week to say that the doctor had been out to her and recommended that my mum should be taken off a couple of her meds to see if things would improve. Yesterday I went over to see my mum but was so shocked to see how she has NOT improved. The home manager told me that my mums state is as good as it is going to get! Right now I just feel so sad to think that my mum can't communicate with me, raise a smile or even know me now. I have so much I need to tell her but I guess she won't even understand me now.


Wed Jan 28, 2009 12:12 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Mrs. H
Sorry to meet you this way and sad for you that your mom is in failing. You have come to the right place for support and helpful information.

You would be surprised at what they can hear even though you may think they can't and even though they don't respond. Tell her everything that you are wanting to tell her. When my mom was in her final month I talked to her and told her what a good Mother she had been and how very much I loved her...a tear rolled down her cheek...in my heart I knew she heard me and understood.

Try to stay strong and positive.

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Dianne C.


Wed Jan 28, 2009 12:57 pm
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Joined: Tue Jan 27, 2009 12:17 pm
Posts: 3
Location: england
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Thankyou for telling me this. I do miss having conversations with her. In the days before she got sick we would chat on the phone almost everyday. I miss those chats I sure do.


Wed Jan 28, 2009 1:18 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Mrs.H,
Welcome to the forums and here is where you will find much needed information and support, I am sorry your Mom is failing at the rate that she is but I will say that the hearing is the last to go and I believe my husband heard everything we said to him , even if he couldn't communicate back, so tell your Mom everything you need to!

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Irene Selak


Wed Jan 28, 2009 1:49 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Mrs H

Perhaps they need to take another look at her meds to see if a possible adjustment is in order.

I lost my Mother in October 2008 and think of her and miss her every day. She was my very best friend. :) She lived 1500 miles away from me and was in a nursing home in the city where my sister lived although I would have preferred to have her live with me. In prior years she would spend the winter months with me. I could not spend much time with her in her final few years ..which I sadly regret...as my hubby has PD/LBD, cannot travel and I am his 24/7 caregiver.

Spend as much time with her as you can or phone often. She will hear you.

Aren't we fortunate to have had that close relationship with our Moms?

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Dianne C.


Wed Jan 28, 2009 1:54 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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Please compare your mother's current treatment to that recommended in Dr. Boeve's "Continuum" paper on lbda.org. Many patients can improve with the proper treatment. Whether this applies to your mother is unknown.


Wed Jan 28, 2009 2:13 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Mrs H

I remember a number of years ago, when my dad was in the hospital and on the day he passed, my sister and I were asking the nurse questions about his condition. She put her finger to her lips, took us aside and whispered to us: when a person passes, the last thing to go is their hearing so don't talk like he isn't with us ..he is hearing you. We were then careful to make sure he heard only good positive things...right till the end. Good lesson well learned.

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Dianne C.


Thu Jan 29, 2009 1:05 am
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Joined: Tue Jan 27, 2009 12:17 pm
Posts: 3
Location: england
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This is all such a comfort to find out this information.
My mothers condition has been a slow deteriation until just this Christmas gone. What is most up setting is the dramatic weight loss- she is literally skin and bones now. Trying to get her to eat is very hard but the home have been wonderful in all that they are doing for her. This is the second home that my mum has been in the first one closed down last summer.


Thu Jan 29, 2009 5:42 am
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