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 New and need advice 
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Joined: Mon Dec 01, 2008 10:51 pm
Posts: 14
Post New and need advice
I am new to this forum and really need some advice. My Mom (83 years old) is now in an assisted living facility (ALF) suffering from dementia, parkinson's-like symptoms and some hallucinations. Her doctors are now considering LBD as the diagnosis. She is not mobile; however, can sit up in a wheel chair. Her vocabulary is still very good, although she is confused.
For 6 months now my Mom has been on thickened liquids but regular food. Last week do to increased difficulty in swallowing she was put on pureed food.
Three days before Christmas the nurses at the ALF thought she was aspirating and sent her to the hospital. She had an EKG/Cat Scan/chest xray/blood work and bronchoscopy. All tests were surprisingly very good; although, they did have to clear the bronchials/lungs of fluid. We chose not to have a feeding tube put in after much research/advice. We were hoping that Mom could continue the elecrical throat stimulation therapy that she had just started at the ALF; however, the speech therapist at the ALF said that the therapy would not help her until they figured out what was really going on with her neurologically.

Does anyone have any other ideas that we could try with Mom? The ALF staff is talking about hospice care at this point. I don't think that Mom is that bad, except for the swallowing. I do know how serious dysphagia and aspiration are and I definitely do not want my Mom to suffer, but I wanted to see if any of you have had this experience and had any ideas.
We will be seeing her neurologist next week. We gradually took her off seroquel, which may have been giving her parkinsons-like symptoms and the doctor wanted to see her off seroquel before diagnosing LBD.

Thank you so much for letting me tell you my story. I am so sad and getting a little scared now...

Sincerely,
namaric


Sat Dec 27, 2008 1:58 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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namaric --
The dilemma you face is one that I have worried about -- what to do if Jerome's ability to eat/drink becomes compromised while cognitively he is still fairly "with it." Does your mom have an advanced directive or has she in any way indicated in the past what she would prefer in a situation like this? My thoughts are with you...

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Renata (and Jerome-in-Heaven)


Sat Dec 27, 2008 2:50 pm
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Renata and Jerome,

Thanks for posting so quickly... My Mom has given directives not to go through extraordinary measures and we felt the feeding tube was extraordinary. My dad just called to say that she choked again this morning and the ALF put her on oxygen. Now my dad and I are trying to decide whether to call hospice now or wait until after talking to her neurologist on Monday...

I'll keep you posted and thanks for your thoughts, Renata.

Marty


Sat Dec 27, 2008 3:28 pm
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Joined: Fri May 11, 2007 12:54 pm
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Dear namaric,

My mother-in-law suffered with this same thing. I agree with raffcons. I hope you already had this type discussion with your mom already, but if she has a living will or advanced directive the decision may have already been made for you.

Call Hospice. We did and they were wonderful. Hospice is not just for "the end". They will come in when the patient has a life threatening illness and need more care than you can provide. They have RNs that come to the house to monitor your loved one's conditions and are in close contact with your family physician. I have heard of cases where they were with patients for over a year. Hospice helps the patient to live out the rest of their life, not just to pass on. Please consider it. I wish I had called them sooner.

My thoughts and prayers are with you during this difficult time. Please keep posting. We all support you.

Joyce K


Sat Dec 27, 2008 3:39 pm
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Joined: Mon Dec 01, 2008 10:51 pm
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Joyce,

I really appreciate your input on Hospice Care. I did tend to think it was for "the end". Great information and I will advise my Dad.

I will definitely keep you posted.

Marty


Sat Dec 27, 2008 4:17 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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I agree -- call hospice immediately. Your mother could be near the end if she's losing the ability to swallow and aspirating.

When you see the neurologist next week, ask for a hospice referral. (He/she will write out an RX.)

Is she taking any dementia meds?

Personally, I would be very nervous about VitalStim, if that's the therapy your mother is receiving at the ALF.

If your mother's wishes include brain donation (or if that's the family's wishes for her), please make those arrangements immediately. This is not something that can wait until the last minute. This is the only way for the diagnosis to be confirmed (upon post-mortem analysis of brain tissue).


Sun Dec 28, 2008 3:13 am
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Joined: Mon Dec 01, 2008 10:51 pm
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Thanks, Robin, for your post. We already have a hospice in mind and have talked with them. All we have to do is to sign, which we will do ASAP. All of this happened so quickly !!!

Robin, if you can help me delete this duplicate post, I would appreciate it.

Marty


Sun Dec 28, 2008 3:12 pm
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Joined: Mon Dec 01, 2008 10:51 pm
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Robin,
I mean the duplicate post under Symptoms and Diagnosis (or maybe it doesn't matter).

Also, my Mom is taking Aricept and Namenda for dementia. I am not sure what the name of her throat therapy is (I will ask the speech therapist tomorrow). I do know that they put 4 electrical probes on her neck and stimilate the muscles for about an hour. It is supposed to build up the throat muscle tissue. She has only does this 3 times before the hospital visit. Does this sound similar to what you are worried about?

Thanks, again. Marty


Sun Dec 28, 2008 3:19 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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namaric --
You have your answer -- your mom did not want extraordinary measures. As others have said, hospice is for the living as much has for the dying -- they will be a source of comfort and strength to you as well as ensuring that your mother is comfortable and well taken care of. Please continue to post and let us know how you both are doing.

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Renata (and Jerome-in-Heaven)


Mon Dec 29, 2008 4:33 pm
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