My mom has been having potty accidents and I decided for her to wear briefs(diapers). I would have to change her and just thinking about makes me uncomfortable. I have never been close to my mom and now I have to change her.. Just thinking about it makes me sick to my stomach. But I know it has to be done and I have to suck it up !I knew that this day would come but not so soon.

My mom seems really depressed since this all happened. Im depressed. I didnt want to go home and see her. I just want this to be over. I hate to see my mom like this. I hate this stupid disease.

Would this situation consider her in the late stage or will be surprise again and again.

Thanks !

Liz

Ummm, the stages are sort of to give a bearing of communicating where progression is quickly. But the average person with Huntington's disease sort of slides from one stage to the next with some signals they are one stage and others they are more advanced. I would say rather than one thing making a person late stage, that I would say she has begun progressing into more advanced HD. There is just sort of a point where you just feel comfortable thinking "late stage" because there is not much middle stage ability left. There is always a transition period... and I would say we always have to be aware of abilities a person has, and what they don't have, so the appropriate care is given.

BTW... helping with "personal care" for an adult family member is always a tough thing to adjust to regardless of "closeness". You will.. and she will. It's called personal care for a reason... and what we are taught from about 4 years old how it should stay. Especially in our ever cleaner society. It's not the reality though. People need help from time to time... even if it's because they have two arms in a cast.



Edited 2 time(s). Last edit at 05/03/2010 11:47AM by Eric.

Im so confused.

Lizceja,

No, she's not late stage. If she can still walk, eat, and talk, she's advanced but not late stage.

Now, I'm not an expert at the levels, but in a practical sense, she still has a few more years before she would be that far gone.

The way I see it, (and please anyone correct me if I'm not presenting this correctly), early stages is where the first cognative and physical symptoms occur. Like just before they wouldn't be able to work. This could be mistaken for being essentric or simply clumsy and irrascable.

The next big advance would be when the person couldn't work at all, or drive. The OCD behaviors start to manifest, and the reasoning ability is essentially shot. They will have trouble with swollowing and eating at this point, but they can still feed themselves. Dealing with day to day business (like anything involving bills and money and long term goals) is out of the question.

After that stage, the person has trouble with personal hygiene and can't seem to be able to focus on any conversation. They become more introverted and can't seem to understand what other people are trying to tell them. They can't read other peoples moods, and have a great deal of trouble with communication. Executive functions like reasoning is totally gone.

Then the full time care stage begins where the Phd has trouble with about any physical thing. They can't dress or bathe themselves at all. They need help eating, and they need to switch to soft foods. They may not be able to walk, and it's very difficult to understand what they are saying. They will be incontient to some degree at this stage. And they will not be able to walk. This could go on for up to 4 years.

After this, the final stage, where the person cannot communicate at all, and cannot eat on their own. They will become immoble. They will not be able to do anything without help. This is very near the end. This stage could last some time, maybe a couple of years. After which the person succombs to the disease by either kidney failure or some other breakdown of the autonomic systems.

If I'm wrong, and sometimes I am, please correct me those of you that have had more experience with this.

Fred,
Thank you sooooo much for that breakdown! That was so enlightening and informative. Much more than any others I have read and gives a caretaker a much better perspective on what we're dealing with as far as progression.
Do you have an estimate of years between what you listed as stage 1 & 2 above???? The stage between "can not work" & "can not dress themselves". And how long the next stage last? I know nothing is exact and it's all just an estimated timeline between stages. It would so help with trying to figure out how long I may be able to work outside of the home.



Edited 1 time(s). Last edit at 05/04/2010 02:35PM by LizzieAnn.

Hey Liz,

My mums in late stages, she has had HD for about 17 years. She has been in a nursing home for the past 10 years. She could still walk, talk and kinda attempt to dress herself when she first went in, and she was still managing the toilet ok (or i should probably say she was obsessed with it). Now she is totally dependent and hasn't been able to walk for about 4 years.

Early on, being the only girl in my family i always felt i got stuck with the toilet job when we took her out, or even at the nursing home i felt they expected me to do it when i was there...and i totally hated it and resented it.

Now she is in late stages I feel im just used to it, and it doesnt bother me so much. I think because she is much much more dependent, she is less hard work generally, and its alot easier now to manage because she is relatively still in bed. I think i also have less anger at her generally too which helps when there's a mess to clean up!

But those early years were gut wrenching and filled with anger. Im not really sure who at but just the whole thing! It is depressing!

There's a part of me that looks back and wishes there was a little more emotional protection from people who were expecting me to do that stuff, and less expectations that you just do it...But sometimes i guess there just isn't anyone else.

I feel for you in the situation your in...i think when the person your caring for drops to another stage or loses an ability theirs a strong sense of grief and confusion. I know when they started putting mum in pads i cried and cried.

It aint fun that's for sure.

Michelle



Edited 2 time(s). Last edit at 05/04/2010 04:19PM by Michelle.

This is what is probably the best "official" breakdown.

How Does Huntington's Disease Progress?

The progression of Huntington's Disease (HD) after a person is diagnosed can be divided into five (flexible) stages, as described by Dr Ira Shoulson(1):

* Early Stage - the person is diagnosed as having HD and can function fully both at home and work.
* Early Intermediate Stage - the person remains employable but at a lower capacity. They are still able to manage their daily affairs despite some difficulties.
* Late Intermediate Stage - the person can no longer work and/or manage household responsibilities. They need considerable help or supervision to handle daily financial affairs.
* Other daily activities may be slightly difficult but usually only require minor help.
* Early Advanced Stage - the person is no longer independent in daily activities but is still able to live at home supported by their family or professional carers.
* Advanced Stage - the person with HD requires complete support in daily activities and professional nursing care is usually needed.

People with HD usually die about 15 to 20 years after their symptoms first appear. The cause of death is not the disease itself but complications such as pneumonia, heart failure or infection developing from the body's weakened condition.

The cognitive impairments and mood disturbances can come in any of the stages, or not at all in particular... so I don't like to use them in the stages. Somebody can have trouble doing the check book right off the bat but doesn't mean necessarily they are intermediate (middle) stage and by the same token they may be able to do the checkbook but unable to preform in several other areas and thus really are mid stage. I also think as diagnosis gets better the life span will increase from that 15- 20 year span to more like 25 or even 30 year. Only because the person will be diagnosed sooner now that we are recognizing and admitting the earliest symptoms of HD... and not waiting on chorea.



Edited 1 time(s). Last edit at 05/04/2010 03:58PM by Eric.

Thank you so much!

LizzieAnn,

I dunno, it depends on how old the person is. From what I can "gleem" from numerous treads on this board, the younger the person is, the quicker the disease progresses. Young starting in the 20's or 30's. Older like 55+. Once the person is in their Midlife and older, the progression is more gradual.

That could account for all the divorces and broken marriages between 30-45. The person's behavior changed and the spouse moved on ; not really because of the disease, butfor whatever reason, the couple had "drifted apart".

Could have been a normal arguement over normal stuff, sure, or it could be a consistent decline in congative behavior that drove the spouse to "fall out of love", with that person with early symptoms.

Was it the fact that the couple just had "irrconcileable differences" or HD? We can't measure that. It's something we can never know for sure.

I read that alot in the forum here, particularly from parents of at risk kids who now, years later, realize the spouse ACTUALLY had the disease, and may be passed from it. When at the time they didn't realize what was going on behind the curtain.

Again folks, correct me if I'm wrong, but they younger the faster the progression, right?

...double posted through computer glitch....



Edited 1 time(s). Last edit at 05/04/2010 04:46PM by Fred.

Is marriage failing a symptom?.. no. It may be a symptom of a symptom(s).

It does seem that the earlier the onset the harder the symptoms. That would make sense be the CAG count would be higher in general. However it might also be that HD is influenced some by lifestyle and life experience. Both of the suffer and the caregiver. Kids in the home add to stresses of a younger couple, where the older couple has raised them already and might even have support of those children. An older couple is more financially set, or will get that way, removing certain stresses that way. And just history helps maintain a stronger emotional bond and trust. All that stuff can help the older couple cope better and have different perspectives than a young couple might have. That in turn can help manage circumstances revolving around HD better. An older couple can have the better environment for HD, the house set for it, the atmosphere, the attitudes. It's one on one care.. and not juggling needs of kids, of jobs, of finances of everyone. It's also much easier to see doing something for the suffer is of benefit when what you do for them doesn't have some mitigating repercussion to an entire family. A spouse can "sacrifice" for a spouse, but may not want kids to sacrifice the same way.

There are the clinical ways to to answer about stages... policies to help with trials etc. But the rank and file are not dealing in clinical situations, or working within policies. And that's the problem.

The answer to Liz is really, yes HD sucks sometimes... and yeah your mom is getting worse, what ever stage she is "officially". You could have had the stages down pat for years. That doesn't mean you are ready for what is happening today. HD is a little ahead of you. And it is depressing sometimes. Just as you accept something, then something else pops up and you have to adjust again. It's very taxing. I get you don't want to do this.. not cause it's messy.. it's your MOTHER for gosh sakes! If you were an aid in a NH within a week you would be a pro at messes. And be out partying on the weekend with no thought of it. Just like every single issue... it's emotional at it's core. And if your emotion is depressed this week... that's ok. Or hers. If you can't get over it... you need to talk to someone. But for this week it's ok to feel bad so you can adjust in a while.

Thank you guys ! You just dont understand how much I needed to know it was ok to be depressed.I'll be ok. I am strong and I'll keep getting stronger. It's just sometimes it gets to me. I know my husband and my family are there for me but its not the same. They dont understand me if that makes sense. But thank you guys from explaining it to me. Not even a doctor and nuero could explain to me like that.

Thanks!

Hello,

My name is Lisa. My husband has HD and has been having problems for a few years and then last May we found out he has HD. He has not worked for one year and also can not drive. He does do sometings around the house but not like he used to. His walking has gone down hill over the last year. I am afraid one of these days he will not be able to walk again because he has a very hard time walking these days. He is 40 years old and it seems the symptoms are getting worse. I never thought he would go down hill this fast. HD scares me and the thought that we have a 6 year old daughter who may one day also have HD.

I agree the caretaker is very hard. WE have been married for 10 years and I never thought I would be caring for my husband this early in our marriage.

Take care,
Lisa

Hey Lisa,

HD is very scary. And is a horrible disease. My mom is 45.. I would have never thought to see my mom like that ever.

All you can do is hang in there. This place is so helpful and if you ever need to talk you can count on me.