Silence sux

[jc141265]

How can it be that Dad can walk, and sit and watch tv but not talk? I visit with him an hour most every other day, and its been more than 2 yrs since he's said anything but a few words, and more yrs than I can remember since i could be sure that any utterances he makes were intentionally said. I.e. He says words now and then but I don't know if they just came out accidentally with no link to a conscious thought or whether he was actually trying to communicate with me.

My husband who I have been with for 7yrs has no recollection of my Dad ever 'talking' other than a 'yes' or a 'no'.

Yes I chat with him all the time. And I think I know what he wants to tell me, and I think his mumbles mean something most of the time.....but what I would do, to just have him 'speak' to me again!!! Hear it from him, not from my memories of who I think he is.

Ha! Thats why I haven't been on here for a long time...I am in tears already! Just thought i'd post here to clarify one of the sides to dementia many are not aware of...when it takes your loved one's ability to communicate away. Its not just the words...Dad can't point to things, or act out his messages...the best communication methods he has these days are loud yells...but even they can be random unconscious events at times. I'm not even sure if Dad can hold a train of thought long enough to want to be able to communicate with me...I often think its almost as if he has become autistic to a certain degree as he doesn't seem to need a great amount of interaction.....but he does light up when he sees me...in fact I often walk away and come back again...several times in a visit, just because he gets a real kick out of me arriving but I don't think he is able to stay on the train of thought to appreciate me staying!

Anyway other than this complaining...for those who know me well, the latest update on Dad is that he no worse off than 1 and a half yrs ago...after spiralling downward very rapidly in what seemed to be the last curtain call and resulted in Dad being admitted full time in a home...in the last 18 months its as if his disease has left him...left him demented and disabled...but it does not seem to be attacking his abilities any further. Has anyone else experienced this...a period of stability lasting almost 2yrs? So much so that when it comes around to his 2nd anniversary in the home next year in April...if he hasn't gotten worse I will be doing some foot stomping and requiring doctors to reassess...though I don't know how I am going to achieve this...

 

[Brucie]

Hi Nat,

thanks for your update - nice to hear from you again, though sorry about your concerns, of course.

You ask

Has anyone else experienced this...a period of stability lasting almost 2yrs?

it is spooky how often your posts and my thoughts have coincided.

Only last evening I was saying to Nina how others at Jan's care home have deteriorated rapidly, and have died, or at least obviously been on a continual slope downwards. I said to Nina that sometimes I even wonder if it may not be dementia, but some other thing that shows similar symptoms, because Jan is strong as a horse, her face is [almost] normal, but the rest of her body is quite wasted. All the other symptoms are those one would expect with dementia, and sometimes I wonder if the care home is providing too good a level of care, such that they have stabilised Jan in a kind of hell.

Jan passed her 5th anniversary in the home a few weeks ago.

My nightmare is that, ten years hence, I'll be saying the same things.....

 

[Grannie G]

My mother was in a NH for 6 years. She too, rapidly went downhill, then seemed to stabilize, while others showed signs of deterioration or died.
She did lose her speech and intelligible language, but was able to answer to her own name, almost to the end.
Global Dementia was on her death certificate, for what it`s worth.

 

[nicetotalk]

Hi Nat

so sorry to hear about your father, iam just responding to what you said about your dad does not say much or comunicate. Ive always wondered if it was just my mum who did not talk. 4 years after my mum was diagonosed she just stoped talking we never heard her voice again she remained that way for another 4 years. I often wonder myself could it be something else similer to alzheimers, it was like my mum had had a accident and from that day no talking no walking incontinent could not feed herself. Anyway you take care

love kathy x

 

[Amy]

Hiya Bruce,

I wonder if the care home is providing too good a level of care, such that they have stabilised Jan in a kind of hell.

Sorry to be negative, but I am sure they have.
Love Helen

 

[Brucie]

...

Sorry to be negative, but I am sure they have.

... and that is the dilemma!

I don't want Jan to go, I don't want her to suffer.

the two do not compute.

 

[Amy]

Bruce,
All we can hope is that the suffering is not too great; that there are many small things each day - a fleeting sight, thought, sound or sensation that brings pleasure - and one day they will be at peace. Till then Bruce, all we can do is hang in there - and love right up to the end.
Much love, Helen

 

[connie]

Hi Nat, been thinking of you so much recently, you were so kind to me very early this year.

So sad to read of your concerns for your dad, and can only try to imagine the frustration you feel as your dad cannot communicate to you. My love and thoughts are with you.

 

[jc141265]

Ramblings

Thanks all for your thoughts and comments..

Brucie, I know exactly how you feel...

I was saying to my husband the other day that I had kind of come to terms with the fact that my Dad had 'alzheimers' or whatever dementia it is...that I had come to terms at least to a certain extent...with the fact that he would lose his mind, lose his bodily functions and after much drama would die...

I had in fact steeled myself ready for it all...

But now...I wonder...

Like Jan, Dad seems as strong as a horse despite being as thin as a prisoner of war...compared to the other inmates who look like they would be blown over by a strong breeze, Dad looks like tarzan. And even the really sickly looking people last much longer than I ever thought possible for someone so ill and tired looking...so I can't even begin to imagine how long Dad is going to carry on in this fashion... (Isn't it terrible how this situation puts you in a position where you analyse the likelihood of death in those around you...and think about in a way that would sound to someone who doesn't know...that you have no feelings for the people you are thinking about?)

Like your feelings about Jan, I don't want Dad to die, but, I think the problem is...like I said above, that I had steeled myself, I have braced and planted my feet...and now I realise its time to start moving again...that the bomb may not go off for several more years yet.

As I again said to my husband...I think what I have to now come to terms with is that my father is like a person who has been in an accident and ended up physically and mentally disabled...I never thought Dad would be a disabled person...I thought he would be sick and die.

What I mean is I have to change my way of thinking to a certain extent..I have to think of Dad as an ongoing part of my life as a person in need of care...rather than my original thought pattern of him being a terminally ill person that I would care for until the dreaded end. Doesn't sound like much of a change of a mindset to outsiders no doubt...but to those who have lived it you'll know how tiring it gets trying to hold a mindset that will 'just get you through'...let alone having to find the energy to manage to change and adapt that mindset to a new understanding of the situation...

At the same time I can't completely unbrace...because you never know with this disease...any time, its like a ticking time bomb...could be 10 yrs could be tomorrow. Some might say that its the same for everyone you love...any of us could die any day...but the problem for dementia sufferers' families is the damn knowledge that the probability of your loved one popping off tomorrow is soooo much higher!

I think thats also why I am currently finding the lack of communication so hard to take. I could handle it with my old mindset, I would just hold his hand until it was all over...but now that I am beginning to realise he could be like this for many years, its really hitting me hard. To have him so close and alive for possibly many years yet...but to not really have him.

And not knowing how to help him, if I could do more of something but I don't know what....I don't want to be sitting around for 10yrs waiting for him to die...if there could have been something I could have been doing to change his fate....but where can I go to look for such answers...according to society he is a lost cause and I am just crazy...I could accept that when there wasn't time on our hands...

At the same time I also am aware that I walk a thin line between giving enough of myself to Dad and giving too much so that I can't cope and carry on my own life...I don't want to walk that tight rope for another 10yrs...but it seems as always that I will just have to do, whats not very pleasant

I have to try to do my best by Dad at the same time I have to try to have my own life. Morals, love and loyalty make me want to devote myself to Dad, but Dad's situation also makes me vividly aware of how precious life is, how short it can be, and how I need to make sure I make the most of it, while I have it. I wish Mum would be more devoted to Dad so I could feel like he had at least two people really caring for him. That would take the strain off immensely I think.

Wow, was going off on tangents everywhere there...a regular therapy session

 

[Lucille]

Dear Nat

You've put your thoughts so eloquently. It is indeed a fine line to walk. Preparing yourself for the inevitable and then the dawning realisation that it could stretch on and on. I really empathise with you. Although my mum isn't at the same stage as your dad, I often feel I cannot cope with the roller coaster of 'being prepared' all the time. Putting things on hold. Throwing all my energies into helping her and making her happy.

As you say, life is short, so seize the day. We have our lives to lead and, as difficult as they are, lead them we must.

Thank you for your post. It's made me realise that a lot of the thought processes I go through are also experienced by others!

Take care

 

[alex]

Hi Nat

My circumstances were a little different to yours..........when i read your post it just rang so many bells.............it was the exact same thing but over a very short period, as if everything was speeded up to fast forward..............my difficulty came in handling the constant daily changes...........i felt as though i just didn't have the time to adjust to the ever changing things that were happening............i'd accept one thing and the next day it changed and everytime it took me by surprise........and thats the thing with this disease Nat...........don't take anything for granted because it will take you by surprise when your not expecting it.

Love Alex x