Need to unload

[NORTHSIDE]

Hi, I signed up to Talking Point several months ago. I've followed some of the threads, but have yet to make a post. But today has been really bad and I just need to unload, even if no one reads this I will hopefully feel better after I have set this down in writing.

My wife was diagnosed with Alzheimer's four years ago when she was 55, although it was obvious what the problem was for some time before that.

She is now 59, I am 62. I gave up work in order to look after her and was fortunate that I was able to draw a pension when I was 60.

My wife no longer enjoys any of the social activities we used to do together, she constantly complains about whatever we do. I have now got to the point where I cannot be bothered to make the effort to take her out. It seems much easier to stay at home and let her talk to herself in front of the mirror.

She has become very anti social and is extremely rude to friends and my daughters. Although she is physically fit, she can no longer speak coherently, struggles to dress herself, shower times always descend into a fierce argument when she refuses at the last minute.

I've tried to get her interested in various activities but she refuses to take part. I've finally taken the plunge and now have a carer in for two hours on two afternoons a week and use this time to go swimming.

Today we went out for a big food shop, she refused to take her shoes off when we got back, (I know this seems a very small issue but it was the last straw). We had a big largely incomprehensible argument after which I shut down and couldn't be bothered to speak other than to say her tea was ready, she spent the rest of the day sat in the bedroom talking to herself.

Tomorrow she will have forgotten all about this, I will still be full of resentment and anger. We used to have such a close loving relationship, I can't believe it has ended in this way.

I dread what tomorrow will bring but hopefully it won't be as bad as today and we may even laugh about something together.

I'm sorry for writing such a despondent first post, sometimes we have one or two days when things don't seem too bad, and I will try and reflect this in my next post.

 

[Shedrech]

hello @NORTHSIDE
posts on TP are always read and with sympathy and understanding, be sure of that
I'm sorry you've had such a day - now you know you can come here and offload, keep posting with whatever is on your mind

 

[JaquelineM]

I'm sorry to hear of your frustrations Northside , so much of what you say is similar to problems I have experienced , I know just what you mean about incomprehensible arguments , we have had them many times ! Even though everyone says , rightly, that it is futile and probably counterproductive to argue , it is impossible sometimes to avoid getting drawn into some hopeless tangle , none of us can be constantly patient ! Nothing helpful to say really , just offering my sympathy , and hoping that you will have a better day tomorrow .

 

[marionq]

Your mention of "your" daughters suggests this is a second marriage? Have you had your wife assessed by social services to see what other care could be provided? Remember that in assessing the assets which are relevant they are those which your wife has and not you. Therefore if she has little savings or pensions you might be entitled to a lot more help which you sound as if you need.

Day care can be a Godsend or a Befriender to take her out or sit with her. Carers to shower her in the mornings would help too. These are all services which should be part of the assessment for her and you too as her Carer.

 

[NORTHSIDE]

I'm sorry to hear of your frustrations Northside , so much of what you say is similar to problems I have experienced , I know just what you mean about incomprehensible arguments , we have had them many times ! Even though everyone says , rightly, that it is futile and probably counterproductive to argue , it is impossible sometimes to avoid getting drawn into some hopeless tangle , none of us can be constantly patient ! Nothing helpful to say really , just offering my sympathy , and hoping that you will have a better day tomorrow .

Hi Jacqueline, thank you so much for your reply. I must admit that just setting my thoughts down in writinghelped me feel better. Today was a much better day, a carer now comes in on Tuesday and Thursday afternoons just for two hours, just enough time for me to get to my local pool for a swim. I had few black looks from my wife as I left but she was genuinely pleased to seemed when I got back which was lovely. I do hope you are coping with your situation, Thanks again for you good wishes.

 

[NORTHSIDE]

Your mention of "your" daughters suggests this is a second marriage? Have you had your wife assessed by social services to see what other care could be provided? Remember that in assessing the assets which are relevant they are those which your wife has and not you. Therefore if she has little savings or pensions you might be entitled to a lot more help which you sound as if you need.

Day care can be a Godsend or a Befriender to take her out or sit with her. Carers to shower her in the mornings would help too. These are all services which should be part of the assessment for her and you too as her Carer.

Dear Marion thank you for replying to my post. Yes this is my second marriage, we will have our 20th anniversary this year. We've tried until recently to get by without outside help, however I decided late last year that I really needed some time to myself and got social services involved. We were fortunate in that my wife was able to claim her occupational pension on ill health grounds and is also in receipt of the full PIP. However because of her assets my wife is not entitled to any contribution from the local authority although they did provide me with a list of care providers. We now have carers two afternoons a week which enables me to get out by myself, l'd like to take things slowly at first, I'm sure before long I will need further help.

It was so good of you to get in touch, it really helps to know that there is help and advice out there from people who really understand my situation.

 

[Pam3482]

Hi Northside. I too have only just started using this forum and it does help to know that there are others who know what you're going through and offer support. I'm afraid I lost it abut today. We were going shopping and I started suggesting my husband got his lunch from about 12 o clock - he is in the early stages and can do this himself. An hour and a half later he still hadn't done so and when I mentioned it again I was accused of always rushing him. I lost my temper and said I didn't regard nearly two hours as rushing! One of his main problems at the moment seems to be awareness of time. He has just gone to bed nearly two hours after he said he was going. Sorry to go on - seems once you start the floodgate open but it's good to get it off your chest.

 

[NORTHSIDE]

Hi Northside. I too have only just started using this forum and it does help to know that there are others who know what you're going through and offer support. I'm afraid I lost it abut today. We were going shopping and I started suggesting my husband got his lunch from about 12 o clock - he is in the early stages and can do this himself. An hour and a half later he still hadn't done so and when I mentioned it again I was accused of always rushing him. I lost my temper and said I didn't regard nearly two hours as rushing! One of his main problems at the moment seems to be awareness of time. He has just gone to bed nearly two hours after he said he was going. Sorry to go on - seems once you start the floodgate open but it's good to get it off your chest.

Hi Pam, it's nice to hear from you. Please feel free to set down in writing anything at all, I'm sure any way of unloading is of help even if replies can't off practical solutons. It doesn't matter how much notice I give my wife that we are going out she is completely unaware of the passage of time and will only act when prompted. So if we are going out I will need to remind her to go to the loo first, then hand her her coat and try to persuade her to put shoes on. Unfortunately it often ends in a row of sorts and consequently I don't take her out as often as I used too. Then now and again she will go out with no trouble at all and we can enjoy a browse around the shops and a coffee together which she really enjoys. You have to hang on to these good moments as they become the incentive to keep on going. Sorry, your quite right that once you start you could go on forever. Hope to hear from you again, Phil

 

[technotronic]

Hi Northside
Having not long lost my wife that (suffered from Early Onset Dementia ) on the 2nd of Jan this year due to a chest infection, I can understand how it all feels to you with your wife. It's a learning curve as to what to n what not to do when caring for your wife, as I learnt when my wife's dementia started in 2012-2013. Over the years I've seen her change quite a lot and our marriage n how we lived it too. No point in getting into any arguments with her or correcting her when she says words wrongly, n any violence can be easily countered by a raised arm in front of you to fend off any blows when they happen. Dementia can change a person so much all you can do is think of her n take care of her n look after her the best way that you can. My thought are with you.
Feel free to off load on here anytime, there's always plenty of people that understand what you're going through n to help you n advise you.

 

[NORTHSIDE]

Hi Northside
Having not long lost my wife that (suffered from Early Onset Dementia ) on the 2nd of Jan this year due to a chest infection, I can understand how it all feels to you with your wife. It's a learning curve as to what to n what not to do when caring for your wife, as I learnt when my wife's dementia started in 2012-2013. Over the years I've seen her change quite a lot and our marriage n how we lived it too. No point in getting into any arguments with her or correcting her when she says words wrongly, n any violence can be easily countered by a raised arm in front of you to fend off any blows when they happen. Dementia can change a person so much all you can do is think of her n take care of her n look after her the best way that you can. My thought are with you.
Feel free to off load on here anytime, there's always plenty of people that understand what you're going through n to help you n advise you.

Hi Technotronic and thank you for replying to my post. I'm very sorry to hear that you have so recently lost you wife.

In the cold light of day I know that it is pointless and only makes matters worse when we start to argue, although as time goes by I think I am learning to just let things go and take a stance only on the things that affect my wife's welfare. Thankfully although there can be some verbal abuse she is not at all violent, let's hope it stays that way.

We are quite fortunate in that she has some good friends who have really made an effort to stay in touch despite the cold offhand way she sometimes treats them.

I hope you are able to move forward positively in your life, Thanks again for your support which is a real help.

 

[Grannie G]

Tomorrow she will have forgotten all about this, I will still be full of resentment and anger. We used to have such a close loving relationship, I can't believe it has ended in this way.

Please don't give up hope @NORTHSIDE

This is exactly where we were at one stage and I was also deeply hurt by my husband's behaviour.

As the dementia progressed, he began to lose the insight which caused so much fear and anxiety and which caused him to make life so difficult for me.

Although I did have to accept residential care was the only answer, his basic personality slowly returned and we were able to enjoy four very close years before he died.

 

[Philbo]

Hi Northside

I have followed a similar route to yourself, in that my wife was diagnosed with FTD 4 years ago (we are now both 67). I had taken early retirement at 59, before she really started to display the early signs (at least I hadn't picked up on them). Our aim was to spend more time travelling, holidays etc but for the first year or so, I spent a lot of time renovating my son's first house.

It was during this period that my wife's mood started to change, becoming more argumentative and silly things, like becoming reluctant to wash her hair, get changed to go out for the evening etc. When challenged about this, she would get very cross, not just with me but with anyone who remarked.

Things came to a head when she acted very strange whilst on holiday in Ibiza, where she started greeting strangers like she knew them. In fact she swore blind we were in our home town, so I knew i had to get her to the doctors. It took nearly another year before we found out what I'd feared all along.

Four years later and although she has withdrawn into her own little world somewhat, she has lost the anger and anxiety and luckily for me, is generally a happy soul. So whereas like you, I'd struggle to get her to dress/undress, for example, after an initial reluctance, I am usually able to help her without much fuss.

Don't get me wrong, though she doesn't argue anymore, I can still get very angry/frustrated over the most silly things, after which I feel very guilty but I guess this can happen when you are caring for someone 24/7. The thing that has affected our lives most is that she's been mainly incontinent now for around a year/18 months. Just another thing to cope with but it has affected how we lead our lives. I do get some respite (see my other posts) for which I am thankful but I agree with you and others, that it takes it toll watching the one you love disappear before your eyes.

I wish you well on your journey.

Regards
Phil

 

[NORTHSIDE]

Please don't give up hope @NORTHSIDE

This is exactly where we were at one stage and I was also deeply hurt by my husband's behaviour.

As the dementia progressed, he began to lose the insight which caused so much fear and anxiety and which caused him to make life so difficult for me.

Although I did have to accept residential care was the only answer, his basic personality slowly returned and we were able to enjoy four very close years before he died.

Hi Grannie G, Thanks for getting in touch. Since my wife's diagnosis I have been reading about people's experiences (mostly bad) of caring for a loved one with dementia and I have always thought that will never happen to us, inevitably it always has. So to receive your post which gives some hope and a positive experience is a great comfort.

We had two friends over tonight for a meal and my wife would have nothing to do with them initially, however with much understanding from them and the aid of a reindeer antler hoop la game they gave us for Christmas we ended up having a lovely evening with lots of laughter.

I'm very sorry to hear that your husband has died but hope that you are now taking care of yourself and have been able to move forward in you life.

 

[NORTHSIDE]

Hi Northside

I have followed a similar route to yourself, in that my wife was diagnosed with FTD 4 years ago (we are now both 67). I had taken early retirement at 59, before she really started to display the early signs (at least I hadn't picked up on them). Our aim was to spend more time travelling, holidays etc but for the first year or so, I spent a lot of time renovating my son's first house.

It was during this period that my wife's mood started to change, becoming more argumentative and silly things, like becoming reluctant to wash her hair, get changed to go out for the evening etc. When challenged about this, she would get very cross, not just with me but with anyone who remarked.

Things came to a head when she acted very strange whilst on holiday in Ibiza, where she started greeting strangers like she knew them. In fact she swore blind we were in our home town, so I knew i had to get her to the doctors. It took nearly another year before we found out what I'd feared all along.

Four years later and although she has withdrawn into her own little world somewhat, she has lost the anger and anxiety and luckily for me, is generally a happy soul. So whereas like you, I'd struggle to get her to dress/undress, for example, after an initial reluctance, I am usually able to help her without much fuss.

Don't get me wrong, though she doesn't argue anymore, I can still get very angry/frustrated over the most silly things, after which I feel very guilty but I guess this can happen when you are caring for someone 24/7. The thing that has affected our lives most is that she's been mainly incontinent now for around a year/18 months. Just another thing to cope with but it has affected how we lead our lives. I do get some respite (see my other posts) for which I am thankful but I agree with you and others, that it takes it toll watching the one you love disappear before your eyes.

I wish you well on your journey.

Regards
Phil

Hi Phil, coincidentally my name is also Phil. Thanks for taking the trouble to reply to my post. It sounds as though we have had very similar experiences, we used to really enjoy our holidays, rather than go away every year we would save and have a bit more expensive holiday every two years. My wife knew that I had always wanted to visit Iceland and secretly booked a holiday there for my 50th Birthday. It was a wonderful holiday and I appreciated it so much more knowing that she would rather have been on a beach in Ibiza.

The last holiday we went on was to Madeira 3 years ago, which had its good parts, but by this time my wife was very anti social and extremely rude to some very nice people we met. Not to mention going through airport security, no sooner turn your back and she had put her coat and shoes on again.

I look forward to the point where she doesn't argue about everything we do, if that point ever arrives. I couldn't be bothered to argue today when she refused to have a shower, but there will be no putting it off tomorrow, I fear the worst.

Incontinence is another issue, we have had a few accidents both at home and outside. I'm not sure if it is true incontinence or just leaving it too late due to being anxious about going somewhere strange. Before we go out I always ask if she wants to 'pay a visit' this too is often a cause of arguments.

Anyway think you for your good wishes, I have found the process of thinking about and setting my thoughts down in writing and reading other peoples thoughts on this forum very therapeutic and almost relaxing.

Best wishes Phil

 

[tesscol33]

hello Northside, likeyou I signed up some time ago and have only posted once. i started a blog on word press to get my frustrations off my chest.
My Husband is 79 and his dementia is progressing rapidly. it wasn't noticed by me even though several things that happened were really out of character. it was on a family gathering just over 2 years ago that others remarked on his behaviour,
In the past three months he has changed even more. I try not to argue and walk away if he contradicts me. I know he will get agressive and use bad language so I try to avoid that. He has also taken to going to bed very early then getting up in the small hours to have his breakfast. this has resulted in me have broken nights
I am still going out for various activities like Choir and volunteering in my local Library , usually 2 hour sessions, but worry about leaving him. I also worry about him cooking or using the Microwave if I am not around.
i realise that my situation is not nearly as challenging as yours. You must keep up your swimming and any other social activities, for your own well being,

 

[NORTHSIDE]

hello Northside, likeyou I signed up some time ago and have only posted once. i started a blog on word press to get my frustrations off my chest.
My Husband is 79 and his dementia is progressing rapidly. it wasn't noticed by me even though several things that happened were really out of character. it was on a family gathering just over 2 years ago that others remarked on his behaviour,
In the past three months he has changed even more. I try not to argue and walk away if he contradicts me. I know he will get agressive and use bad language so I try to avoid that. He has also taken to going to bed very early then getting up in the small hours to have his breakfast. this has resulted in me have broken nights
I am still going out for various activities like Choir and volunteering in my local Library , usually 2 hour sessions, but worry about leaving him. I also worry about him cooking or using the Microwave if I am not around.
i realise that my situation is not nearly as challenging as yours. You must keep up your swimming and any other social activities, for your own well being,

Hello tesscol, Thanks for getting in touch. The more I read on this forum the more I realise we all have had so many common experiences. Although I had noticed some changes in my wife it was not until I met up with some of her work colleagues who expressed their concerns that I really realised what was happening. Then because of a restructuring at her workplace she had to reapply for her job which included an interview. Needless to say she didn't get the job, as it happened I knew one of the interviewers quite well and speaking to him a few weeks later I was told the only question she could answer was to give her name. She couldn't even explain what her current job was.

Last summer my wife was getting up as soon as the sun came up 4.30ish. Because she was anxious about going out of the room she would sit on the end of the bed and hum loudly uhtil I got up. In the end I bought black out curtains and they seem to have done the trick, she now stays in bed until I get up.

I am glad you are able to get out and about, it's important to hang on to these things for as long as you possibly can, but I know what you mean about the worry of leaving your husband alone. I no longer leave my wife alone, if I did I'm sure she would leave the house looking for me and I can't really lock her in.

I hope you manage to catch up on your sleep, everything seems so much worse and it's not easy to be patient when you are tired. Keep in touch, I think setting our issues down in writing is very helpful.

 

[tesscol33]

Hello tesscol, Thanks for getting in touch. The more I read on this forum the more I realise we all have had so many common experiences. Although I had noticed some changes in my wife it was not until I met up with some of her work colleagues who expressed their concerns that I really realised what was happening. Then because of a restructuring at her workplace she had to reapply for her job which included an interview. Needless to say she didn't get the job, as it happened I knew one of the interviewers quite well and speaking to him a few weeks later I was told the only question she could answer was to give her name. She couldn't even explain what her current job was.

Last summer my wife was getting up as soon as the sun came up 4.30ish. Because she was anxious about going out of the room she would sit on the end of the bed and hum loudly uhtil I got up. In the end I bought black out curtains and they seem to have done the trick, she now stays in bed until I get up.

I am glad you are able to get out and about, it's important to hang on to these things for as long as you possibly can, but I know what you mean about the worry of leaving your husband alone. I no longer leave my wife alone, if I did I'm sure she would leave the house looking for me and I can't really lock her in.

I hope you manage to catch up on your sleep, everything seems so much worse and it's not easy to be patient when you are tired. Keep in touch, I think setting our issues down in writing is very helpful.

 

[tesscol33]

Good to hear from you Northside.
As you say it is a comfort to know that one is not alone with this dreadfull affliction.
i have tried various strategies in order to keep my husband up later
some of which have succeeded. it is difficult to get him engaged in any TV programmes
now whereas in the past he loved watching all the David Attenborough Nature programmes and countryfile. However if I manage to get him watching something fairly low key from 8 to 9pm that seems to work.
So far this has worked twice this week!!
I discussion with my daughter we also concluded that he seems to have developed activities often connected to people on the autism spectrum!! My kitchen is obsessively cleaned all the time with no sign of anything having been used within minutes!!
Conversation is no longer an option either......even though we watch the news together he is unable to discuss any issues. He also has problems with telling the time too!
As a retired Infant teacher and mother of four, i always was a patient person but i am finding this very challenging.
Thanks for taking time to respond to me!!!
Tess

 

[NORTHSIDE]

Good to hear from you Northside.
As you say it is a comfort to know that one is not alone with this dreadfull affliction.
i have tried various strategies in order to keep my husband up later
some of which have succeeded. it is difficult to get him engaged in any TV programmes
now whereas in the past he loved watching all the David Attenborough Nature programmes and countryfile. However if I manage to get him watching something fairly low key from 8 to 9pm that seems to work.
So far this has worked twice this week!!
I discussion with my daughter we also concluded that he seems to have developed activities often connected to people on the autism spectrum!! My kitchen is obsessively cleaned all the time with no sign of anything having been used within minutes!!
Conversation is no longer an option either......even though we watch the news together he is unable to discuss any issues. He also has problems with telling the time too!
As a retired Infant teacher and mother of four, i always was a patient person but i am finding this very challenging.
Thanks for taking time to respond to me!!!
Tess

Hi Tess, I was interested to read that your husband was obsessively cleaning, my wife too has developed similar behaviours, mostly she tidy things away stacking them in pile usually on our bedroom window sill, or wrapping them up inside a jumper. I will find that things disappear, table mats and coasters from the dining room table; CDs next to the stereo; magazines; this mornings post; sure enough there it is neatly stacked/folded and wrapped inside a jumper on the bedroom window sill.

I too have almost given up on trying to make conversation (which I feel quite bad about) as I either get no response, a few nonsense words or an angry retort that has nothing to do with what I've said.

Anyway, onward and upward as they say,

Regards

Phil

 

[Philbo]

Hi Phil

Yup - constant "tidying" resulting in not being able to find a dammed thing!. So when the TV displays a "the TV will turn itself off in 3 mins" message, the hunt begins for the remote - often found in the kitchen bin.

I am gradually getting rid of any ornaments, as they travel more than I do and everyone down the pub keeps a very close eye on anything they put down on the table, drinks included!

Phil