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 Constant echolalia - how much time left? 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Constant echolalia - how much time left?
This sort of mental anguish can occur with those who are dying or who are thinking about dying.

I'd suggest the book "Final Gifts." There is at least one whole chapter on someone dealing with this sort of "psychic pain." I think that's the term they used. Plus something like "end-of-life agitation." The book notes that when a family member is dealing with this sort of pain and agitation, often the death is not peaceful and it's very hard for the rest of the family to experience.

Is your father on hospice? Can both the hospice social worker and the spiritual person on the team be charged with speaking with your father? Often these people have had patients like your father, so they have a good idea of what to say. Often they will talk about how dying is for many people, in hopes that some knowledge will make it less frightening.


Sun Apr 08, 2012 7:11 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Constant echolalia - how much time left?
It's one of the most heartbreaking parts of this disease---that frustrating inability to communicate. I want so very badly to understand what he's trying to tell me and I cannot and then he just gives up. :cry:

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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.


Mon Apr 09, 2012 12:51 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Constant echolalia - how much time left?
My mother used to complain bitterly of pain despite having as much pain medication as the doctor was willing to prescribe, including Fentanyl pain patches and Vicodin for breakthrough pain. My niece who is a NP practicing in oncology called it "psychic pain" and it was very hard to watch.

However, as my mother's dementia has progressed in terms of confusion, forgetfulness and delusions, she is perfectly able to communicate but no longer complains of pain and denies it when asked. (So far, the pain meds remain the same, except the extra PRN Vicodin is not given because she doesn't complain.) I don't know if this is typical but it is a big relief not to have her suffering the way she was.

Julianne


Mon Apr 09, 2012 8:51 am
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: Constant echolalia - how much time left?
So many of these posts resonate with me. I can't understand my husband most of the time when he talks, then he gets upset when I ask him to repeat. I try so hard to guess what he wants and make him comfortable and always feel I'm failing. I get plenty of times away, I have help, and I'm just so tired of the whole thing. Then I look at this dear man, reduced to being lead around and wearing diapers and I just feel so helpless. It's all a matter of management, ok, but I'm an old lady and a cancer survivor. Whatever happened to sitting in the sun and enjoying a well-earned retirement? I'm so sad, so sorry for all of us family members trying our best to find our way through the thickets of this frightful disease. And beyond sad at the despair of our dear ones suffering its effects.
Emmanuel, a sincere hug to you as you walk this dreadful path. We all walk beside you, though you walk alone.


Tue Apr 10, 2012 1:25 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Constant echolalia - how much time left?
Challenged, sending you a big hug too. Do you get some respite from CGing? Maybe a trip to somewhere so you CAN go sit in the sun, read a book, take a walk in the woods, or whatever would be a relaxing vacation for you sounds like it might be in order! Do you have someone come in once a day, a week, or something on a regular basis so you can get away and recharge? I hope you can keep up with friends and family regularly so you are not so isolated and dealing with the stress of being a CG 24/7/365. 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.


Tue Apr 10, 2012 7:47 am
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: Constant echolalia - how much time left?
Thank you Lynn. Yes, I bought long term health ins for both of us years ago. I have help daily for several hours, plus our children are actively involved. In a way it makes feeling so sad even worse, I feel guilty to be so fortunate. One of my kids said I had a "woe-is-me" attitude, makes being able to vent on this forum all the more important to me. Clearly i can't let my family in on the true horror of their dad's condition they don't believe it and don't want to hear it. He is quite different with them than with me and they all think I'm exaggerating. I get away to recharge, come back, and nobody else sees he's worse. My home is not mine any more, it belongs to Lewy and its nurses. And yet I'm truly fortunate...


Wed Apr 11, 2012 2:52 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Constant echolalia - how much time left?
I'm sorry that your family members can't or won't see what's really happening and that makes it worse for you. Life is so unfair sometimes. There will be a time when he will no longer be able to do showtime, so people will see what you are dealing with, and how much he is struggling. I am sorry some of your family members are unwilling to see what's happening and help you both more, but you know what is going on, and you know you are doing your best. That's all that has to matter for now, unless one of them is capable and willing to step in and be the primary CG. You have lots of empathy here! Many of us have or had family members unwilling to share the burden or really understand what was going on. You just can't let them drag you down! Make sure you are taking care of YOU! 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.


Wed Apr 11, 2012 7:15 am
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Joined: Thu Dec 08, 2011 5:23 pm
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Post Re: Constant echolalia - how much time left?
I have the same issues as many of you regarding Mom's inability to communicate. It's so sad and so very frustrating for both of us. Every time I read the posts I just sit here and cry for everyone who is walking through the valley of Lewy. I'm thankful that she does not have the pain that several have mentioned. Recently, she has taken to her bed and is refusing to eat. She still drinks a little water from time to time but not nearly enough and now has a UTI. Sometimes she refuses her meds, drops them on the floor or spits them out. She stopped wearing her hearing aid weeks ago and now will not wear her glasses. She's lost 20 pounds since January. I'm not sure what to make of all this, but I hate to see her upset, angry, agitated, combative and crying which is what happens anytime anyone tries to get her to eat or do anything else she doesn't want to do. All she really wants to do is sleep and be left alone. She mumbles or does not make sense 99% of the time, but one thing she has always been able to say clearly is "I wish I could die." I wonder if that's what she's trying to do now.


Wed Apr 11, 2012 9:49 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Constant echolalia - how much time left?
Hi - pardon me if this has been asked before, but have you had your mom evaluated by hospice? The symptoms and behaviors you are describing remind me of some of the things I read in the hospice pamphlet about what happens in a person's final months. They do tend to shut out the rest of the world, cut way back on eating, drinking and don't want meds. I'd ask for her to have hospice evaluate asap. She may be on that final leg of the journey and if I were you, I'd want to know that so I'd know what to expect next. I've been there myself only a year and a half ago, so I know how sad and sometimes frightening this part can be. Sending you lots of positive thoughts, and hopes that you have good friends and relatives to help support you as you support your mom. 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.


Wed Apr 11, 2012 9:58 pm
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Joined: Thu Dec 08, 2011 5:23 pm
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Post Re: Constant echolalia - how much time left?
Who does the evaluating to see if she is ready for hospice? The doctor? The hospice people?


Wed Apr 11, 2012 10:12 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Constant echolalia - how much time left?
A dr. has to recommend the eval. Then a hospice nurse comes and follows a rigid set of guidelines (let's say in our case it was rigid, but perhaps a little more flexible in some places) to determine if the person is eligible for services. If they are accepted, it is felt that the person has 6 months or fewer to live. That can vary a lot, of course, but they take care of people in their final months, weeks, hours, so they have a lot of knowledge about this stuff and support for the family which I found very helpful. Good luck and let us know what happens. The shared experiences here are helpful to others as they get to the stages where we are. 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.


Wed Apr 11, 2012 10:25 pm
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Joined: Thu Dec 08, 2011 5:23 pm
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Post Re: Constant echolalia - how much time left?
Thank you, Lynn. Mom is 83 and in an ALF. I love the people there and talked with one of the nurses today about palliative care. They tell me they can take care of her til the end. I am wondering if there is any advantage to having hospice come to the facility as they would to a private home. In other words, could they do anything else for Mom that the facility might be unable to do for some reason? I could also have her transferred to the hospice, which is a longer drive for me but would also be more comfortable as I could stay with her at night if I needed to. It's a lot to think about. I just want what's best for her but not always sure what that is.


Wed Apr 11, 2012 10:45 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Constant echolalia - how much time left?
dmdaviss,
Yes, absolutely there is an advantage to having hospice go to an ALF *on top of* what the ALF is doing. Ask the ALF if they only allow certain hospice agencies in. Tell them you are interested in talking to them to see what more they might be able to offer your mother *and* you. Or talk to some of the other families of residents who have been there awhile and ask what hospice agencies they've seen at the facility and what impression they have.
Robin


Wed Apr 11, 2012 11:49 pm
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Joined: Thu Dec 08, 2011 5:23 pm
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Post Re: Constant echolalia - how much time left?
Good advice. Thank you, Robin.


Thu Apr 12, 2012 1:03 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Constant echolalia - how much time left?
Robin (or anyone who knows), is there a financial advantage to using Hospice as well? If similar services are provided by the ALF or NH, are there extra charges?

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


Thu Apr 12, 2012 1:51 am
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