How long can I go on?

[jc141265]

Hi all,

This poll might not be one everyone wants to look at the results for, but I really want to know how long I can expect to have to carry this feeling around inside my heart and I'm sure there must be others out there like me, who prefer to know than not know, even if the news is bad.

Living with a family member having this disease is like running a race, some of us really need to know how to pace ourselves, some start this race thinking it will be a 100m dash but others of us are beginning to realise that perhaps we're actually running in a marathon.

Oops just realised I need to explain the poll better! The question should be, how long has it been since diagnosis until present day condition?

Appreciate your input,

 

[katieberesford]

poll

Nat

I have put David down from when he first had his faints (1996) and when we were being messed about by several consultants at various hospitals all of whom scratched their heads and said not sure what is wrong with him but we will keep an eye on him. His official diagnosis was a long time coming and this was in 2002!

Hope I haven't messed up your poll!!

Katie

 

[Nutty Nan]

Katie,
Your experience is scarily similar to ours, although it did not take quite as long for the diagnosis to be made (but then my husband was a little older): we were worried about the faints, nobody had any idea what they were about, we went from pillar to post, months and years went by, we were made to feel like hypochondriacs for worrying about the faints - then we ended up with Aricept, and the rest is history ......

 

[Brucie]

Oops just realised I need to explain the poll better! The question should be, how long has it been since diagnosis until present day condition?

I ignored this as we didn't get a diagnosis until 1998, by which time we had already been 'running the race' for 4 years since I diagnosed it, and another 3 years since the most obvious symptoms had started.

For us it has been more of a marathon, but I'm hoping the 26 refers to miles and not years...

Great idea for a poll, by the way!

 

[Lulu]

Mum had 'faints' too, and these occurred some 6 years before diagnosis. After the faints there was something different about her, but I wouldn't have been able to say what other than a few memory problems which seemed to creep up on us, and a feeling she was somehow a bit distant. I am absolutely convinced that the faints were the beginning, but diagnosis only came 18 months ago.

 

[Canadian Joanne]

Just to be able to put a definite answer down, I voted from the actual diagnosis time. Which will be 5 years January 3, 2006. Engraved on my heart.

jc, everyone is different (I know, you've heard that a thousand times). But it is true. And it seems the earlier the onset of the disease, the faster the progression, which can be good in some ways, bad in others. Since my mother is considered earlier onset, it really depends on my day & my mother's day. Sometimes I'm overwhelmed & I want everything to be over. Other days, I'm desperate to hang on to my mother as long as I can.

These things happen & we just soldier on as best we can.

 

[connie]

Like you Joanne I put down from date of diagnosis (and yes engraved there forever).
have heard all the talk of early onset deteriating quicker, but from reading many of the posts on this forum, that evidently is not so.
I have never come across an illness that was so indivual. You can take any amount of data, but no two cases are alike.
There are always similarities in the progess, no hard and fast rules.
I am sure it is better this way.........Frustrating I know, Connie

 

[McK]

One Day At A Time

Nat - My wife, aged 65 was diagnosed almost 9 1/2 years ago at age 56. You can probably add a year or two from the time of being diagnosed, since in retrospect, there were "signs" prior to the diagnoses, but as with many of us, alzheimers was the last thing that crossed our minds. As stated in earlier comments, each case is different but so similiar in many ways. At this state, your health and the health of all those involved as caregivers is of the outmost importance. So, take care of yourself, because your loved one, no matter what stage they're in, depends on you and your closeness to them for love and support. McK

 

[jc141265]

Mck,

If you don't mind my asking what behaviour is your partner now showing, is she still able to walk/talk, bedridden, able to communicate, not able to communicate, swallow, not swallow? Horrible questions, but I would like to know what I should expect regarding Dad in the future...aware also that your situation might be different again.

Dad currently can't talk though he comes out with the occasional word often as a reflex response, he can still walk but gets a big lean up at times, is very rigid when lying in bed, all stiff and crooked with only his eyes moving, his mouth open. He can still swallow but he coughs a lot and his breathing sounds very watery so I think he's sucking his spit back into his lungs and not swallowing it all the time. He still eats heartily however if someone feeds him. Totally incontinent, totally unable to dress or undress himself, sometimes appears as though he means to pick things up or move them but hands movements are nowhere near the object. Sometimes dribbles, can take some effort to catch his eye but he is able to swap eye contact for quite some time once you get his attention.

Appreciate any comments you or anyone else can make regarding whether Dad appears to have a long way to go or is ahead of your own partner in bad symptoms despite it having been a shorter period.

Likewise I understand if this is too difficult or you don't want to reply. I am very straightforward, possibly harsh and too up front for some people. I think I have a strong ability to handle shock so am quite happy to hear the harsh blows, get the facts straight on the chin, and often am unaware that what I say sounds so shocking to other people.

On the other posts about the differences with earlier onset, I think it's quicker and harsher with symptoms but perhaps the younger you are the stronger physically so you tend to survive longer.

As for the everyone is different thing, yup I know this, I see it every day,...still by weighing up information from all these different cases you can develop some kind of expectation/average I would think??

 

[McK]

Who Knows!

Dear Nat - Thanks for your inquiry. As I stated before, My wife, like your dad was stricken at an early age (56), and progressively declined fairly fast. My wife has been bedridden now going on 2 1/2 years and is basically like an infant. She has had four major seizures in that time and the only medication she is on is for the seizures. I puree all her food and feed all her liquids by spoon since that's the only way she can take it. Her swallowing is becoming more difficult at times and you have to take the time to feed her. A change in the swallowing patern is usually a sigh of "things" to come. Eventually we will face decisions that will test us in ways unknown at this time. As for a time period; I was told almost 1 1/2 years ago that my wife wouldn't be here. Changes can occur overnight or over the long haul and as you stated before, all we can do is stand by helplessly and watch as our loved ones fade from us a day at a time. In my case, I'm supported by a loving family and my faith. Your dad, you and your family are in my thoughts and prayers. McK

 

[Sandy]

Swallowing Difficulties

Dear Nat,

I don't know if you've seen this before, but here is a link to a very good article on swallowing and dementia by a Speech and Language Therapist:

http://www.picksdisease.org/swallowing.html

Take care,

Sandy

 

[jc141265]

Mck you are an angel

Thank you Mck for your response and your very kind words, you touched my heart and I am glad you still have your faith.

I kind of still do, but was never brought up in church, my family had their own religion I guess, we knew all the Christian stories and followed their morals as best we could, but I haven't been christened and don't go to church except for weddings and funerals. The way I interact with God, is thus probably not so respectful, my God allows me to be angry at him, and he knows I am very very angry with him these days...sooo angry, not because of what is happening to me but what is happening to my innocent father! I am still on speaking terms with God though and I will have a chat to him about your situation as well, and 'pray' for you, your family and your wife too.

The way I see God, is that he made me this way, full of questions and that my reaction of anger, hurt and confusion is understandable, if he truly exists then he will understand. I will rightly be even more annoyed if it turns out there is no such entity, but I have to hold onto the fact that there is, because otherwise this whole thing called life, is pointless!

Best wishes to you and my thoughts are with you,

Nat

P.S. Sandy thanks for that link I'll have a read.