PDA

View Full Version : upset and confused ? :(



ccinjersey
5th March 2015, 12:59
Hi All

Has anyone heard of als dementia ???

My dear friend went recently went to respiratory doctor. She was adamant she didn’t want to go, but went to appease her partner. Once there she refused to do a breathing test, and refused to have her vitals taken. As usual she told them she was fine insisted she does not have this illness.

The doctor spoke privately to her partner, and said this is not denial ,but has a form of als dementia causing her to perceive that she is fine when she is not. The doctor also felt it was time to bring in hospice home care, and also stated she felt my friend will not make it till end of year. How can she make a statement like that?? Based on what ?? My dear friend did not let her do any tests on her to determine and evaluate further clinical findings.

I’m so upset and confused, we still go shopping, dinner and the movies together. My friend is still eating and breathing on her own, why would hospice be needed now??

We all thought her denial was just that, denial. Also if she has dementia how could her mind be completely focused, clear and sharp when it comes to everything else except als? Another concern to me if she has dementia how can she make any reasonable and logical decisions on her health ? She has refused any forms of intervention, tube feeding, assisted breathing etc..and the respiratory doctor had her sign forms stating this. If she has dementia and basing her choices on an illness she doesn’t believe she has then how do we know this is what she really wants ?

I would have asked all these questions to the doctor myself, but unfortunately I did not go on this visit. Going to call the nurse maybe she will have some sensible answers…. none of this makes sense to me.

Thanks for listening
CC :(

john
5th March 2015, 13:20
Hi CC,

Read this. This is the type of dementia which affects people with als/mnd. It can just affects mood behaviour so you find sufferers crying uncontrollable about relatively insignificant things or laughing hysterically inappropriately

http://www.nhs.uk/conditions/frontotemporal-dementia/Pages/Introduction.aspx

John

Springtime
5th March 2015, 13:31
Hi CC,
My hubby has Frontal Dementia with MND. They are both connected, also when someone is retaining O2 gases it can be the case that it can cause cognitive problems. So, your friend could have either of these mentioned.

Because it is only a part of the brain that is affected there are many areas of the brain that remain fine. My husband for example is affected with his thought processing, reasoning, concentration, emotions and short term memory can fluctuate. However his long term memory, spelling, and other areas are not affected, this is why it is called Frontal Lobe Dementia. Unfortunately, there is not enough awareness of this condition and as soon as Dementia is mentioned people think of Altzheimers. My husband is quite capable of travelling on a bus etc etc mentally, but because of the MND and weakness it causes, this prevents him from doing many things he could do. I get tired of telling our friends he cannot do A, B, or C because of MND or visa versa He is not able to do A,B, or C because of FLD. So for example many people think he cannot walk for his paper because he has FTD and will get lost, this is not the case he is as capable as you or I, to not get lost but MND has weakened his respiratory muscles so he gets out of breath therefore that is the reason.
Jim, has also signed forms for no recusitation, no peg, no Bipap. And, I at one time thought that maybe the medical proffesion would decide he was not capable of making these decisions, although I know he is. Anyway, it was decided by a panel of people after watching him and speaking with him that he is very much capable of being in charge of what he wants. I think the only difference maybe that we had to explain the options to him, keeping it short and simple and then let him mull things over in his mind for a while. I can say being married to him for 28 years that he would have made these same decisions years ago that he has made today, as it is what he has always believed or wanted.
Jim is still walking, eating, talking going out for meals or the pictures (although he often falls asleep)
So, I would say maybe your friend is very similar. But knows what she does and doesnt want and is therefore quite capable of making her mind up. As for the denial part, my hubby is in denial, now do we blame the dementia or do we look at the fact that he has always buried his head in the sand over anything confrontational or bad news. The Nurses at the hospice and I are in agreement he knows really, but has dealt with it and shut it away in a cupboard and thats where it stays as far as he is concerned.
Unfortunately, I also have to add that some people with FTD/MND can become quite unreasonable and aggresive, this has fortunately not happened in my husbands case.

Sorry to go on and on, its so hard to try and get the point across in a message like this. But tried to explain best I can. xxxx

njm
5th March 2015, 14:37
Hi CC,
My hubby has Frontal Dementia with MND. They are both connected, also when someone is retaining O2 gases it can be the case that it can cause cognitive problems. So, your friend could have either of these mentioned.

Because it is only a part of the brain that is affected there are many areas of the brain that remain fine. My husband for example is affected with his thought processing, reasoning, concentration, emotions and short term memory can fluctuate. However his long term memory, spelling, and other areas are not affected, this is why it is called Frontal Lobe Dementia. Unfortunately, there is not enough awareness of this condition and as soon as Dementia is mentioned people think of Altzheimers. My husband is quite capable of travelling on a bus etc etc mentally, but because of the MND and weakness it causes, this prevents him from doing many things he could do. I get tired of telling our friends he cannot do A, B, or C because of MND or visa versa He is not able to do A,B, or C because of FLD. So for example many people think he cannot walk for his paper because he has FTD and will get lost, this is not the case he is as capable as you or I, to not get lost but MND has weakened his respiratory muscles so he gets out of breath therefore that is the reason.
Jim, has also signed forms for no recusitation, no peg, no Bipap. And, I at one time thought that maybe the medical proffesion would decide he was not capable of making these decisions, although I know he is. Anyway, it was decided by a panel of people after watching him and speaking with him that he is very much capable of being in charge of what he wants. I think the only difference maybe that we had to explain the options to him, keeping it short and simple and then let him mull things over in his mind for a while. I can say being married to him for 28 years that he would have made these same decisions years ago that he has made today, as it is what he has always believed or wanted.
Jim is still walking, eating, talking going out for meals or the pictures (although he often falls asleep)
So, I would say maybe your friend is very similar. But knows what she does and doesnt want and is therefore quite capable of making her mind up. As for the denial part, my hubby is in denial, now do we blame the dementia or do we look at the fact that he has always buried his head in the sand over anything confrontational or bad news. The Nurses at the hospice and I are in agreement he knows really, but has dealt with it and shut it away in a cupboard and thats where it stays as far as he is concerned.
Unfortunately, I also have to add that some people with FTD/MND can become quite unreasonable and aggresive, this has fortunately not happened in my husbands case.

Sorry to go on and on, its so hard to try and get the point across in a message like this. But tried to explain best I can. xxxx

Springtime:

I think this is a very helpful response. The Frontal Lobe functions are so intricate and complex it very much depends which part is affected. Thus, as you say, it will manifest differently in every single person. For some it weights on memory disruptions whereas for others it weights more on personality/behavioural disturbances.

On another point: you mention Jim has respiratory problems and that those appear to be early onset. I was always under the impression (wrongly) that respiration issues came later and that it would be very unusual to still be walking etc when respiratory issues commenced. But clearly not so. Does Jim have other symptoms other than breathlessness. I am having chest problems: tightness and mild discomfort. I thought it was my long-standing asthma but possibly not. I am going for respiratory assessment in a month. I have a pulse oximeter and it reads 97% each morning and I have no morning headaches. However it sounds like that does not preclude respiratory decline. Your comments and re3flections are welcomed.

Charles

Terry
5th March 2015, 15:11
I have frontal lobe problems and often wonder if my short term memory is affected , my emotions most certainly are. I think that there are quite a few links with dementia and Mnd, especially with PlS.

I don't know much about dementia Cc, and it is quite likely that your friend has it in some way. But does it affect her in that way, |I don't think so otherwise you would pick it up from her when she was taking a year or two ago. By what they are saying, it would seem to be at an advanced stage.

I'm no expert but I think that they may have it wrong.

Love Terry

Jangobie
5th March 2015, 15:14
Hi Charles, my husband had respiratory onset MND and used a nippy from day one of diagnosis. So you can definitely have respiratory problems from very early on, but I think it is quite rare, he then developed all the other symptons after that. Diane

Terry
5th March 2015, 15:17
Hi Charles;

There are something like eleven different types of Mnd and the ways in which it starts. One starts with breathing problems.

Love Terry

ccinjersey
5th March 2015, 15:19
Thank you John, Zip, Terry for you help in understanding.

Other then sleeping more now, she does not show any of the symptoms your dear Jim is experiencing Zip other then the denial. Also, no strange outbursts of behavior John as that article explained could happen or even subtle changes that anyone has noticed. I agree, I think they have it wrong too Terry.

She lives in her Hope, of getting better, and believing what Dr. Quack tells her. A wonderful place to be in my opinion, and tragically heartbreaking at the same time. I believe it’s really that simple and what is really happening here. I see no change in her other then her physical limitations now. I wish she would have done the breathing test. It least it could have been some form of a gage of where she is at in her respiratory functions, but it was her decisions to make, and I guess ultimately what difference does it really make? She is breathing, she is here, that’s all that matters.

I also believe in my heart she chose not to do the test because she is feeling a change for the worse in her breathing, and like your Jim Zip prefers not to know and prefers to bury her head in the sand. A simple coping mechanism . I’m not on board with this whole dementia theory by a respiratory doctor that did no form of a clinical evaluation on her.

What upsets me more, and most that this doctor could make such a statement about her life expectancy without a physical examination and clinical facts. Sometimes I want to hit these doctors over their heads with their medical books.

Maybe I’m the one in denial now, but I’m just not buying this. She is living with mnd not dying of it, maybe one day, but not now :( :(

CCxox

pete
5th March 2015, 15:20
Hi All

Has anyone heard of als dementia ???

My dear friend went recently went to respiratory doctor. She was adamant she didnít want to go, but went to appease her partner. Once there she refused to do a breathing test, and refused to have her vitals taken. As usual she told them she was fine insisted she does not have this illness.

The doctor spoke privately to her partner, and said this is not denial ,but has a form of als dementia causing her to perceive that she is fine when she is not. The doctor also felt it was time to bring in hospice home care, and also stated she felt my friend will not make it till end of year. How can she make a statement like that?? Based on what ?? My dear friend did not let her do any tests on her to determine and evaluate further clinical findings.

Iím so upset and confused, we still go shopping, dinner and the movies together. My friend is still eating and breathing on her own, why would hospice be needed now??

We all thought her denial was just that, denial. Also if she has dementia how could her mind be completely focused, clear and sharp when it comes to everything else except als? Another concern to me if she has dementia how can she make any reasonable and logical decisions on her health ? She has refused any forms of intervention, tube feeding, assisted breathing etc..and the respiratory doctor had her sign forms stating this. If she has dementia and basing her choices on an illness she doesnít believe she has then how do we know this is what she really wants ?

I would have asked all these questions to the doctor myself, but unfortunately I did not go on this visit. Going to call the nurse maybe she will have some sensible answersÖ. none of this makes sense to me.

Thanks for listening
CC :(

Hi there CC,
Not sure that Pat is suffering as the doctor has said, from the very first post I have empathised with Pat , she is as always handling this condition with her own way, who is to say that's so wrong, we all have our own way ,who is right , my own views are whatever makes her halppy ,I was also accused of not doing as the rest did, feeding tube ,is a must!! No it's not if you don't want one. As for the Hospice visit again if she wants ,for me it was well worth the trip ,just to see not all of the horror stories are true, amazing place and people who gave me a positive visit .but as they said I don't need their services yet, but if and when I do I know what to expect.
What amazes me and has done from diagnosis is the complete lack of response from people who pay to be treated when sick and with MND/ALS there is nothing in the way of treatment ,we just commend the hospitals , as being great and wonderful service ,in what way is the no treatment other than pegs, trach, ops to keep us alive to endure more and more disability, he'll they can't stop us dribbling . Yes a truly wonderful service no cure no treatment and pointless trips to see the neurologist who ticks your boxes and see you in six months ?? ,why should we tolerate this abysmal response from those who are paid well for their expertise and yet still can't treat us for a disease that no one knows much about, just wonder how many more of us have to die befor someone gets a real kick up the rear to wake them up to what suffering is like with nothing to look forward too exept a decline in life.
So support your friend however alien it may seem ,she is dealing with her own demons in her own way ,long may she continue to do so.
Pete
XXX

Steve
5th March 2015, 16:14
Some wonderful insightful comments on this thread. I wanted to add a comment but others have said things better than I ever could.

You're right to be annoyed CC, no one should make predictions about life expectancy without being asked. In some ways your friend's coping mechanism, which may seem stubborn, is in fact a very clever emotional response. Ignorance is bliss after all. My wife worked in a hospice for 6 months on her medical rotation, some people, even in their final hours refused to believe they had cancer. I think their brains just couldn't comprehend it. I guess no one knows how they would cope with a terminal illness until it happens.

Ellie
5th March 2015, 16:16
CC, I read your post several times and get why youíre confused and upset. Yes, some people, but by no means all, develop cognitive problems.
Notwithstanding the fact you didnít get the information first hand:
Cognitive impairment is diagnosed after appropriate tests, not just because somebody is stubborn and belligerent. You know what her "normal" is.
Itís almost impossible to give a prognosis; was there no explanation given?
I know itíd be a battle, but thereís no harm in hospice involvement, both your friend and partner could benefit.
Ellie xx

ccinjersey
5th March 2015, 16:31
Completely agree Pete.

There are many things I don't understand in her choices I have to admit. For example having a state of the art eyegaze system sitting in a box when we all want desperately to understand her. Tube feedings, and all the rest that comes along with this illness I couldn't say unless I was walking in her shoes, and could make choices that would only be right for me. She will always have my love and support, and most importanly she knows this :)

There is that one bit of hope out there with GM6 Pete. I have to admire Nicholas Grillo and his relentless fight to get it into the hands of all those enduring this unbearable illness. Can only continue to hope and pray the powers that be are listening.

XOXOXO

njm
5th March 2015, 16:35
Hi Charles;

There are something like eleven different types of Mnd and the ways in which it starts. One starts with breathing problems.

Love Terry

Terry:

Yep. I use an oximeter and my daily oxygen saturation (morning) remains a stable 97% on a daily basis. Notwithstanding, over the last months, I have been feeling uncomfortable in my chest and have a tight cough. It gets partially relieved by asthma sprays but is fairly continuous. I suppose the oximeter readings do not preclude respiratory muscle involvement.

Charles

ccinjersey
5th March 2015, 16:53
Agree as well Ellie. There is so much assistance and support groups out there that she and her partner could both benefit from, but as you said it would be a battle. When I suggested it in the past it was shot down. In some ways to me it seems she is her own worse enemy. I hate the isolation she suffers, and much as the illness itself. Again though, I have to remind myself these are her choices to make not mine.

Our hospice here is a bit different. When hospice becomes involved it usually means end of life care whether it be in home or at a hospice facility.

Hoping her stubbornness, and state of mind will take her a long way.

Thanks again
CCxoxo

njm
5th March 2015, 16:56
CC:
I too, like Ellie, have read your post several times and this is what strikes me. please correct me if I have this wrong:
Your friend has a definitive diagnosis of MND
All around her (including you) see clear deterioration in her consistent with the diagnosis
She completely rejects the diagnosis despite experiencing that deterioration
She thus completely rejects any attempts to get her to engage with the diagnosis
Others see her deterioration to a point where it seems advanced

So my questions and thoughts are:
1. If not to MND what does she attribute her symptoms to?
2. To the observer (or better still her partner) is she clearly deteriorating quickly?
3. was she always cantankerous or is this co-morbid with the MND?

I know a highly educated medical specialist in Cape town with MND and FLD. He is in complete 'denial' of his condition. he falls all over the place, his spech is palpably impaired but he is utterly unable to comprehend it. I think it is safe to say this goes beyond denial. His complete lack of insight into his condition (which he could diagnose in others) is a tragic component of the Frontal Lobe damage. My calculated guess is this could well be the case with your friend.
I hope I do not sound judgemental.

Regards

Charles

Springtime
5th March 2015, 17:10
Hi Charles in reply to you, Jim has had shallow breathing and difficulty taking breaths for 18 months or so now, he was treated for COPD. I never believed it was because the symtoms did not fit the picture. Finally we were referred to a Neurologist from Liverpool who recognised immediately ( from his reaction) what was wrong so symtoms were, weakness in his fingers and hands, hollowing between thumb and finger, marked muscle waste in arms and shoulders plus more weight loss. He could not confirm anything obviously until tests had been completed, itvwas confirmed as FTD/MND in September 2014. Since then his respiratory muscles are weakening and he is retaining 02. I don't know but I think maybe Jim has respiratory onset, but until we next see the team in May at Liverpool this is not confirmed.

njm
5th March 2015, 17:32
Springtime;
thanks for the reply. So tough is it not? The FTD bit must be very difficult in addition to the neuromuscular part. I bear you in my thoughts as I do so many people here. I try to spend a few minutes a day thinking about, and pondering on, the people I have met here.

Charles

Springtime
5th March 2015, 17:43
Pete, I agree with so much in your post, as you know I speak as a Carer for my husband. And yes if somebody is in denial or whatever as long as they are happy .
The hospice is invaluable as you say they give good advice and make us aware of the true facts of not having feeding tube, Bipap etc without in any way influencing decisions that have to be made.
Also I think you make a very important point of supporting even if we may not agree with decisions made by our friends or loved ones.

ccinjersey
5th March 2015, 18:41
Hi Charles

I don’t think your being judgmental, just realistic.

Yes to all your above questions, except that she is very easy going in her personality, and only when mnd is spoken of does she disengage. She will not hear of it nor can anyone speak of it because she becomes upset and angry. Therefore, no one speaks of it.

There is a key component here that should be explained. It really comes down to choosing Hope above all things. She has a Lyme doctor treating her for Lyme. Which is the illness she believes she has, because he tells her this is what she has. I confronted this doctor awhile back with her partner, pushing him to answer realistic questions, and this slick quack had an answer for everything except why she is not getting better.

Even still, it makes no difference because he provides something no one else can, Hope.

I have taken some heat from friends and family telling me that as her best friend I should give her a reality check and tell her like it is since no else will. So she can stop wasting time and money on useless antibiotics that are at this point probably doing more harm to her then good. I’ve chosen not to say any more, it angers and upsets her, and for me I want our time together spent with love , and nothing else. I believe in her heart she knows…but can not come to terms with it.

Which is why I can’t get on board with dementia. Maybe dementia is involved in all this, it just strikes me odd that only when mnd is addressed that she has dementia?? If this is just another symptom of mnd then it sounds to me like it could have a very self protecting effect.

xoxox

njm
5th March 2015, 19:21
CC:

that new info here explains a lot. That does not sound FTD to me. And her refusal of MND is being reinforced by a doctor. I too would cling to the Lyme Disease. Clearly she wants to blot out anything that contradicts that. When that ultimately crumbles you will be there for her. What you say certainly does not sound dementia. Stay with her on the journey CC. Thanks.

Charles

ccinjersey
5th March 2015, 20:37
Yes I will be Charles, if the the fates allow.

Thanks for all your input it really helps, and puts things in prospective. My dear friend is no longer going back to see the respiratory doctor in the future. I don't know if that will be a negative or a positive thing.

I don't like this doctors predictions or her reasoning for it without clinical evidence. I feel like she is putting a jinx on my beloved friend. To much negativity for me, maybe that's why my friend won't go back again ?! How I wish I could talk to her about it, but she will only disengage from it, best to leave it alone.

Thank goodness for all you good people here :)

xoxoxo

Lycanthrope
5th March 2015, 23:20
Hi CC x I'm pretty sure my dad had FTD, although the doctors said there was nothing wrong with him in that respect, but I knew him well enough to notice the differences in his personality and behaviour. You and your friend are very close and as such maybe you would notice any differences in her? The doctors are not always right. tc xx Becky

BlueEyesOhio
6th March 2015, 04:19
CC and All,
Good discussion. CC, I'm glad you chose not to confront your friend. I don't think it would be loving to try to "make" someone accept the "truth" Her response is protecting her mental health. She hasn't accepted it and maybe she will never accept it. Denial is a protective mechanism of the wonderful body we live in. If that is the level of her acceptance - so be it. And that doctor - giving a prognosis with no testing or examination is just WRONG! Now her partner has to live with the so called "prognosis" What a horrible sentence to put on someone.

Ok, done with rant!!!

(((((((((((((((((((((((((((hugs))))))))))))))))))) )))))))))
Lynne

bakeit Forum