Time Lines - your stories needed!

[annesharlie]

Another post from a clueless newbie. This is all still so foreign to me and I have so many questions.

Ron has FTD, 52yrs old, and now not working, not driving and kind of pottering round the house and in a very flat emotional state. Very little conversation happens, it is not a marriage of equals any more. What I want to try and establish is how long will I be able to leave him alone? I know of course, that each person is different.

I'd love to hear from you who are a bit further along about how long you had of this stage, after diagnosis, until caregivers were needed in the house? Also then how long from then till the move to a care home? I wish so much I knew. Actually, I wish even more that I could press the FF button and have it all done, I've always been that way, if there is something difficult I always want to get it over with! I was talking on the phone last night to a lady who is further down this path, and her husband is in care, and doesn't know her now, and I said I actually felt envious of her, as she has quite a high level of independence now, and there is not all that anxiety around his safety at home. There is also now the beginnings of her living her life for herself, and picking up the pieces and moving on.... Am I the only one with these awful thoughts?

Anne

 

[Grannie G]

Hi Anne,

You are not a `clueless newbie` you may ask as many questions as you wish, but whether or not the answers you receive will be what you want to hear is another matter.

My husband is older than yours, is considered to have Alzheimers, having been diagnosed in 2005. From what I`ve read on TP, there are both similarities and differences with AD and FTD

The `marriage of equals`, seems to be over very quickly, as one becaomes a carer and the other becomes very dependent.

In my husband, I see it as a slow decline. He was retired when diagnosed, but now does not know what to do with himself in the house, apart from go to buy the papers, read the papers, vaccuum and make endless cups of tea.

My husband has always been a very private person and hasn`t taken kindly to two home visitors, a Community Psychiatric Nurse [CPN], who we both found intrusive, and someone from Social Services, we`re not sure who, who didn`t seem able to relate to our needs, and left flustered.

Following experiences with my mother in a care home, we promised each other it would not be for us. I can see the day will come when I will probably have to break that promise. But it seems a long way away.

The same applies to home carers or respite care. I cannot see my husband accepting anything like that yet. He would insist he is perfectly capable of looking after himself.

Saying that, I was at the hairdressers for 1 hour, I`d left him a note, he had my mobile number, and the appointment was written on the calendar. When I was on my way home, I phoned to tell him, and found him in a panic. He didn`t know where I was, thought I`d gone shopping and had had an accident and was getting ready to go out to look for me.

I have no feelings of resentment towards my husband, it`s not his fault after all, and he has been deprived of the plans we made for retirement just as much as I have. I`m one of those people who feel that whenever life knocks you back, you just have to make the best of what you`re given and get on with it.

I`m living my life from day to day. We can`t plan for the future, as we don`t know what the future will bring. I feel so much compassion for him, I could cry, just looking at him. He is frightened, of the future, of what is happening to him and sometimes, he is frightened of me. and that is awful.

If I had the choice, I would prefer to be the carer than the one being cared for.

My life is on hold.

I don`t know whether or not I`ve answered any of your questions Anne, or even whether anyone can.

 

[Skye]

Another post from a clueless newbie. This is all still so foreign to me and I have so many questions.

Anne, we all feel clueless at times! Every stage is a new experience for us, and we all need to ask questions. In time, you'll be the one answering them!

Very little conversation happens, it is not a marriage of equals any more. What I want to try and establish is how long will I be able to leave him alone? I know of course, that each person is different.

There is little or no conversation in our house either, and I very quickly had to become the dominant partner, as John lost the ability to converse, or deal with money.

It is now seven years from diagnosis, and although I have carers in for two sessions a week to allow me to go out and attend meetings or just talk to people, John still goes out for walks on his own in the immediate area.

I started to have the carers 21/2 years ago, and this year he has started to go to day care one day a week. I don't have any other help in the house.

I hope we won't be ready for a care home for a long time, if at all, but who knows?

I was talking on the phone last night to a lady who is further down this path, and her husband is in care, and doesn't know her now, and I said I actually felt envious of her, as she has quite a high level of independence now, and there is not all that anxiety around his safety at home. There is also now the beginnings of her living her life for herself, and picking up the pieces and moving on.... Am I the only one with these awful thoughts?

I think we all have times when we think we can't cope any more, but I don't think I ever wished it was all over.

I don't think you should be envious of your friend, I don't think the worries cease when the loved one goes into care.

If you read the posts from people in this situation you will know that there are feelings of guilt to contend with, besides the constant struggle to ensure that the loved one is receiving proper care. There may also be financial worries.

I don't think 'moving on' can realistically begin as long as the loved one is still with us.

Sorry if this is upsetting for you, but I think you have to face the fact that you may be in for a very long haul.

But we're all here to support you, so keep posting.

Love,

 

[connie]

Dear Anne, forgive me if I say"be careful what you wish for, one day it might come true"

I say this because there were times when caring for my dear Lionel at home, and having to call out the paramedics in the middle of the night to pick him up, I wished things were different.

Daylight and I was back to being patience itself, but lack of sleep, and lifting Lionel took its toll of me. Last November he went into care permanently.

Where is my indepence now. I am only as good as he is. If we have a nice visit, then I sleep well. On difficult days, and at present things are very bad, no sleep.
MISS HIM LIKE MAD. WOULD GIVE ANYTHING TO HAVE HIM HOME AGAIN.

Do try to enjoy whatever time you have. My thoughts are with you. Take care,

 

[Skye]

Connie, love, you have just said what I was trying to say, only so much more graphically.

I have so much respect and sympathy for you.

Love and huge hugs,

 

[gerrie ley]

To Anne

I am no expert on alzheimers my wife is into her fourth year now.She is on 10mg Aricept. You MUST get all your husbands affairs sorted out now if you havent already done so such as his will and Power of Attorney these are a must. The first year was easy and it was hard to believe that she was suffering from Alzheimers just forgetting things in general Things deteriorate slowly now four years on she humms all the time an occasions messes her knickers wont bathe or change her underclothes unless she is forced tends to do the oppositeto anything I ask her to do wont let me out of her sight even in the house wakes me up during the night to tell me the time Sits in her chair and refuses to clean the house make meals wash the clothes iron and is generally disruptive when I am on the phone or speaking to someone or watching television or indeed doing this post now.She says the television is two noisey I have bought a pair of headsets she cant understand television she doesnt trust anyone even me she is always saying someone has taken her money.She is man mad I dare not leave alone with a man in the house she is very possessiveshe goes to bed at 6.30 and shouts and bangs on the floor until I go up.I would think about twelve months and I wont be able to cope I am at my wits end now I hope I havent upset you but this is my experience and I hope it isnt yours in four years time

 

[nicetotalk]

Hi anne

Just read your post and i agree with conne, unfortuantly no one can realy say well in 6 months this will happen in a year this will happen. Its such a diffecult time for you and its the not knowing what lies ahead for you and your husband. My only advice for now is take each day as it comes, keep posting on here any time of the day or night.

take care
kathy x

 

[Grommit]

Hi Anne. No you are not the only one with awful thoughts.

Tonight I could have easily taken Jean to the local hospital and left her there for them to look after. She is going through a phase of destroying everything, letters photographs, books, papers, paper money, in fact, anything she can get her hands on while i am out of the room or at work. So I thought I would not leave anything for her to destroy and she started on the marmalade jar, all the tops missing, Olive oil bottle top missing, address and telephone book missing, half a bottle malt whisky missing.

Searched the dustbins and cannot find them. Searched the house and cannot find them.

This disease is cruel, exasperating and very, very difficult for the carer.
So what must it be like for the sufferer? I almost envy them at times. They seem to be ok in their own world, totally unaware of the disruption they are causing to "normal" life.

Fed up, Doncaster

 

[Skye]

Hi Grommit

You poor thing. How on earth are you coping with that and a job as well. I'm not surprised you feel fed up.

You know without me telling you that it's the illness, not Jean, that is behind this disruption. But it doesn't make it any easier to cope with.

Does Jean have anyone with her while you're at work? It sounds as if she needs 24 hour supervision at the moment. Is there anyone who could be with her during the day? Are you getting as much help from SS as you need? (It doesn't sound like it!)

I know you've talked about the possibility of a NH, and I know what a difficult decision that is. But you are only human, and there is only so much you can do.

In the meantime, love and hugs,

 

[DaisyG]

Same Feelings.....

Morning Anne and all,

Anne, I understand what you mean about the FF control. I sometimes have these thoughts too. It might not sound fair to some, but I do.
My husband is young too. Even younger than your husband. Our lives have become even more difficult in these last few weeks.
We don’t have an equal marriage like so many others. It hurts so much.

NOW…….I NEXT TO NEVER GO OUT NOW WITHOUT ARRANGING
A ‘PAID FOR’ SITTER. I’M FINDING I CAN’T.

Grannie G, I’ve experienced a few of the things that you have.
If by chance I do pop out, (and when we have a sitter), I ALWAYS go over things again and again…. Where I am going … What I shall be doing…..
I write a HUGE note in thick black marker pen, get my husband to read it OUT LOUD.

I check that he can ring me (this is becoming MORE of a problem), he knows what to do in an emergency etc… etc..
Can he reach the house phone… and mobile phone…?.
I can get ‘all ready to go’… get my coat on …. AND he looks at me and says..
“Where are you going?” !!!

One time I was out (without sitter) 10 minutes MAX, been to get paper from local shop….
Had breakfast half an hour earlier , left him with a HOT cup of coffee, and a biscuit….
“Oh my GOD !!! , where have you been… I’m starving !!”

HE WAS IN A REAL STATE AND PANICKY… HE COULD NOT SEE THE PHONES ON THE TABLE IN FRONT OF HIM OR HIS OVER SIZED NOTE …. HE THOUGHT I WAS GONE FOR HOURS !!
Coffee incidentally, was still warm on my return.


Like you and so many of us Sylvia, I feel that my life is on hold.
I often say to myself (and I have NEVER said to anyone else, until now) “I want my life back”..


I’m edging closer and closer to finding him a permanent place in a home. I dread it.
I’ll have my life back I know…. But I’m dreading that too.
Having a chance to start over, and having no-one to share it with. It’s so unfair.


My husband is still in hospital now, getting over that dreaded pneumonia, and other things…
Despite having a little ‘peek’ at what a normal life once was, I MISS HIM SO MUCH.

Before he went into hospital, he was not very mobile at all…. Chair to loo… etc…
Now it’s likely that I will have to have a hoist on stand-by for BAD days… Lifting will be an issue like it was for you Connie. And like you, I'm an expert at not having sleep!!


He’s most likely to be doubly-incontinent now, unless we are lucky and that ‘comes back’.


I feel so guilty in having to say… “I can’t do this any more….” But, it’s just a matter of time.


Take Care,

DaisyG

 

[annesharlie]

Angels

Dear dear people! What angels you all are! Reading these notes I get an over-riding feeling of such love, such selfishness, gentleness and kindness under the most trying circumstances. Wow! This is not what we signed up for when we said "I do" - or rather, we had no idea what we were signing up for!

It is so scary to think of facing these things that you write about ,but I suppose it comes just a little at a time so one gradually adapts.

Grannie G - I am worried about you - I know you are coping for now, but you do need to have the chance to get out, whether or not your husband likes caregivers - otherwise you will wear yourself out totally. It may help to have the same face coming, and at first just for an hour while you are there so he becomes used to it. It's hard that he feels he doesn't need help = that fierce independence on his part would complicate things. But you really do need time away - that much I know already even if I am new to this.

Skye - thank you, I know you speak with such wisdom and experience. I know I must live for today!

Grommit - oh dear- I am amazed that you are able to manage all this! You must be so stressed out at work, wondering what you're coming home to each time. Can someone come to check on things while you're out?

Daisy - you have moved into that next stage - needing someone with him all the time - it must be so hard. My psychiatrist suggested ( later) getting one of those cell phones with only 4 big numbers, and they each dial one number, they're designed for pre-schoolers to contact mom or dad. Maybe he could get one of those around his neck, though I do sense now you're at that stage where you just can't leave him. I am sure you sometimes just want to scream, like that day when you nipped out for the paper. What age are you and your husband? Do you have children too? It really is so unfair. I am finding it hard to see "normal" men round town, running errands, doing chores, and looking with a wistfulness at what I won't have in the future....


Thank you all
A

 

[Blacksheep]

Dear Anne

Mum had her diagnosis of FTD one year ago. Like you I would like to know time-line, the reading I have done shows the disease taking its toll anywhere from 2 - 20 years. Already we do not leave Mum alone, she is currently passive, restless, difficult to engage in any task. I can go from chuckling over the lastest mis-placing of stuff to tears of anger, helplessness, sadness and self pity, and though I don't want to admit to it have also wished for an end to watching this deterioration, it seems daily at the moment.

x

 

[Grannie G]

Dear Black Sheep

All forms of dementia can drive anyone to the limit. All the emotions you have just recorded, are the changes we have to adapt to, day by day, or even hour by hour.

When we feel we are coping, we feel compassion, sorrow, even pity. When we do not cope so well, we feel anger, resentment, impatience.

We are all in good company. We try our best.

 

[annesharlie]

Blacksheep

Your honesty makes me feel better that I'm not the only one with thoughts like that. How old is your mom?

I read you wise words about our emotions when we are coping well, and when we are not. Ok, now tell me how to spend more time coping well rather than not? Right now, as Ron is still communicative, and able to look after his needs, I don't feel the anger, frustration etc. Though sometimes when the sentence starts "Tell me again..." I want to roll my eyes, as he'd been told 5 min before!
I had a bit of a fright yesterday - happily! - I had sold one of my paintings ( I'm an artist) but he put the cheque in the recycling bin. I spent a panicked hour looking everywhere for it, of course he said he hadn't seen it. So now I have to be very very careful to put important papers away. On the table, or kitchen counter is a danger zone!! Thank heavens I found it, I was so relieved. I will also have to check the bedroom bin before emptying it, he'd thrown away his travelpoints card yesterday. I'm sure you've all been here!

A

 

[DaisyG]

Dear Anne,

In answer to your questions...
I'm 39, and my husband 46. And we have no children.


I too have the frustration of repeating myself, again and again.
I remain calm and cheery, (on the outside), but inside my heart is 'flipping'.
It is just part of my life now, and some days can be better than others.


I know all about the missing mail thing.
We went through a stage when he was more 'mobile', ..... where he would 'claim' the mail for himself.... then hide it (easy to find), and BAN me from paying any bills.


Thankfully most bills paid AUTO, anyway.......


When he went to the bathroom, I would 'find' the mail, copy it, pay anything that needed paying ..... put the mail back in it's hiding place...
He was none the wiser !!

Make sure that you NEVER leave a 'paper shredder' plugged in though.
One day last year, he shredded 'something', and to this day I have no idea what it was. He said that it was not him though....


Timeline...
He has gone downhill pretty fast over this last year.


Now, we have some days when he can't even use the phone, so I'm not sure that getting a simple one would do, but it worth a try.

He can lock the phone, then forget how to un-lock it.
Then not be able to find anything on it ...... as
I HAVE MOVED AL THE NUMBERS AROUND.... and shuffled the order that things were in.....
Some days are OK.

Right now, he does not know his phone number (house/mobile).

Some days he can't use the remote, and throws it in temper.


Hope you are having a sunny weekend in Vancouver.

Take Care,

DaisyG

 

[SusanR]

Timeline

Anne, timelines will vary, but I will share mine as best as I can remember. My husband was diagnosed with FLD at age 58 in Sept. of 1998. He was a salesman who needed to drive quite a lot for his work. When his confusion level increased, he retired in October of 2000. I stayed home with him the first year, but returned to the work force in Aug of '01 because of the need for health insurance. At that time he was still driving and would do our grocery shopping and would still shoot at his club. He quit driving in '03. It wasn't until March of '06 that I had hired help at home while I was at work and still left him alone occasionally for short times. I placed him in assisted living in September of '06 and a nursing home on December 19th. I had thought placing him in assisted living was the hard part, but seeing him at the nursing home is harder.

Rich has been on Reminyl since the onset to slow down the progression - have no idea if it has or has not.

Through all of this we still went to concerts, took vacations and ate out as much as possible. It became my job to shower, shave and dress him for the past year and I started to resent it - I remember the morning he was going to assisted living and thought, please let this be the last time I have to do this.

He will come to depend on you and will not want you out of his sight - you will become his security blanket and it will break your heart. He will take his frustration out on you and you will get angry right back. Don't be surprised when you hate him and know you can't live this way anymore. Be assured that once he is no longer at home, the love returns and this is when it gets tougher. The guilt has been hard for me to handle.

Rich is now on a dementia wing in a nursing home. I go to see him once a week at lunch time. I go during lunch so I will have something to do since there is no conversation and I just plain run out of things to say - for the most part, he can eat by himself, but prefers assistance so I'm there. He knows me, but no longer smiles when he sees me. I think he knows I'm his wife. We will be married 41 years next month so that hurts a little.

I will say to take care of yourself and make sure you have a life away from the disease. Make sure you have an attorney who specializes in elder law to assist you in setting up a power of attorney for health care and financial matters.

I am enjoying my new freedom - sometimes finding it difficult to fill all the new found hours that are mine. I have a job I love and intend to keep working - retirement just wouldn't be the same without Rich to share it.

I've read there is a 10 year timeline with this disease and we will be entering the 10th year in September - I don't know if this means death or the last of Rich will disappear.

When you have more questions, just fire away.

Susan

 

[annesharlie]

Oh Daisy, you are both so young!! Are you able to leave him? How long ago was the diagnosis? I have a paper shredder, but Ron doesn't know it - it's down in my art studio where he never goes. Thanks for that advise. I'm trying to deal with bills and important papers right away, and not leaving them lying around the house as I usually would. I think Ron may loose his ability to use the phone fairly soon, as he has a lot of trouble with a longer number ,but is fine with the shorter ones. We have everything programmed into the phone so that's a real help.

Susan
Thank you for your honesty - you have been through such a rough time, it's been a long time. I am so much in two minds about medications - the whole progression of this disease is clearly so painful for the family, I wouldn't want to delay the inevitable, and for Ron's sake too, it's a really hard decision - as it would be good if he had a longer time of lucidity, and then a steeper decline at the end. Ghastly to even have to think about these things. We did a power of attorney and representation agreements over a year ago, so that's all in place. I suppose I should change mine now, so that my oldest son has POA. I am encouraged that you are somewhat able to move on with your life, your job, and the time you have to yourself. That's the most important, it sounds really like Rich is comfortable and well looked after where he is, so you don't need to feel guilty. I feel you did more than most wives would do, with that showering and shaving him - wah, I can't imagine it, you are a saint. I think that I will find it trying that things will just take WAY longer to get done, I'm very efficient with my handling of time.

A

 

[Lila13]

Timelines: we were aware of my mother's dementia in Oct./Nov. 2005, Aricept was first prescribed in April 2006 and she died less than 3 weeks later.

Our next door neighbour looked after her aunt at home with dementia for 23 years before she had to be transferred to hospital. (The neighbour's husband had said either she goes or I go.) I can't remember how long she was in hospital before she died, that was over 30 years ago, medicine has changed so much since then.

A colleague of my mother's took early retirement to look after his wife with dementia in (about) 1981, and she was still alive and living mainly at home at the time of my mother's death in 2006.

Lila

 

[annesharlie]

My word, Lila - all these stories are a surprise to me. I am just amazed at how quickly your mom succumbed - was there something else brewing that actually caused her death? In a way it is a mercy, as I am sure that man may say, over 25 years of looking after his wife, what a life commitment. That is what's so hard about this, one just doesn't know what the future holds.

Anne

 

[Lila13]

Well, I think she may have had a bad reaction to the Aricept, or she may have hoarded her pills and taken too many at once. We'll never know ... No, I didn't think it was a mercy, it was too soon. And the man who was looking after his wife for about 25 years (she was spending one week in 8 in respite) didn't sound as if he'd have thought it a mercy either, (I never met him but saw his letters to my mother), seemed to be very fond of her and didn't want her to go into full-time care.

Only the neighbour, when someone at the hospital said the conventional "I'm sorry about your aunt", said she wasn't sorry, she was glad that that nightmare was over. I think it was very hard for those children, their great-aunt was horrible to them, as their mother obviously thought her duty to her aunt was more important than her duty to her children. I know, there are children who have a worse time of it than that.

Lila