Angry!

[JoJo11]

I don't think it's unreasonable to feel anger - after all, as carers, we have no reason to believe that our situation is ever going to improve. Looking into a black tunnel all the time is not going to make anyone feel uplifted and bright!

I do, however, think that in the main, carers do a great job in controlling their anger. And that is the most important thing. Sometimes, when I'm controlling my anger, I find myself pressing my fingernails into my skin, to remind myself!

Nonetheless, I love my Mum and I don't have to remind myself very often about that! She cared for me when I was tiny and unable to do anything for myself. Its my turn now.

 

[love.dad.but..]

Hi All

Most of you talk about parents. My partner is 69 and has had it for four years. His mother had it and is sister of 78 is in a home and just sits now not speaking and double incontinent so my partner thinks now that is what will happen to him.

He can still be left if I leave a note where I am but he frequently gets up in the middle of the night to shower, constantly searches for his wallet although I try to get him to leave it n the same place. This can happen in the day or night when the house gets turned upside down. He cannot manage his finances or medication and has to have his clothes laid out each day. Obviously there is much more but by far is the lack of conversation. We used to chat all the time and laugh a lot. I miss him. I was married for 33 years but we have only been together for 17 years and I am sad it will not be longer. He was my soul mate and we had so much in common I do miss him how he was but I still love him to bits

Hi All

Most of you talk about parents. My partner is 69 and has had it for four years. His mother had it and is sister of 78 is in a home and just sits now not speaking and double incontinent so my partner thinks now that is what will happen to him.

He can still be left if I leave a note where I am but he frequently gets up in the middle of the night to shower, constantly searches for his wallet although I try to get him to leave it n the same place. This can happen in the day or night when the house gets turned upside down. He cannot manage his finances or medication and has to have his clothes laid out each day. Obviously there is much more but by far is the lack of conversation. We used to chat all the time and laugh a lot. I miss him. I was married for 33 years but we have only been together for 17 years and I am sad it will not be longer. He was my soul mate and we had so much in common I do miss him how he was but I still love him to bits

There are also many on TP who have or have had partners with dementia and there is a section called 'I have a partner with dementia' so pop into there and you will find similar posts and support. Am sorry to hear of your problems...in my case it was my dad who had dementia and whether parent, partner or friend none of it is great but you will find a sympathetic ear wherever you post

 

[shirleywurly]

My mum was domineering when i was younger and was a carer all her working years for the elderly in their homes. I cared for my partner most of my life till he died, now I feel it should be my time.
But my mum had 2 strokes which she recovered from with my help and professional when she came out of hospital she went into rehabilitation for 8weeks then I was pressurised into being her carer and told any money she has( including small amount of savings) i should keep for her care that I should become the parent now as I have no children and let her come live with me.
I felt as thou I had No choice on the matter as was told council could not pay for her care as they didn't have the finances. I am 58years old and feel I was not ment too have a life I am sick of these 4 walls have lost my friend's now and only go out for shopping. I don't get restbite and left to my own devices banging my head against a brick wall for help and advise. Sorry this is so long just so fed up. Not mum's fault

 

[Sue17]

I'm going to go against the general grain (so far) here...but I feel angry that my father has dementia and I have to deal with it after all the years of having to deal with his narcissistic, functioning alcoholic, demeaning attitude/beliefs/behaviour/comments. He's my dad and I love him on some level, plus he's a human being/close family who I don't want to see neglected. I battle daily with what I WANT to do and what I SHOULD do. I fight and challenge health professionals for his care and medical needs.

But I still feel so angry that I've been put in this position. I feel angry that the dementia is magnifying his foibles which I always hated and now trigger me. I feel angry that I thought it was a good idea to get LPOA, because that is now a millstone around my neck with him phoning me multiple times a day demanding money to load onto 'adult' chat sites (which aren't legit ones!), and nothing I (or siblings) say will persuade him that he CANNOT just spend the rent or carer money on it, nor can I (we) placate him. I should have just got him to pay for a funeral plan and then just left him to it. Perhaps the professionals would have taken his illness seriously a little sooner if he'd stopped paying his rent and care visit fees...!

I also feel angry and sad when I see on Facebook the people my father worked with, or my friends' parents, going about all 'normal' and spritely, on holidays, treating their grandchildren, making plans, etc. Some of them are still working and highly respected in their field(s). My father? He shares inappropriate (and sometimes graphic) links on Facebook, and doesn't realise, remember, or care that he's done that.

I did carry on with the rant but decided to delete as I could be here all day. Suffice to say I am sad and angry that my father has dementia, but not as sad and angry I would be had he been a beautiful loving kind caring person prior to the illness. So I feel sad and angry for you all.

Sorry for the rant, but I've tried telling the couple of friends I have left, and all I get is "but he's your dad, you're always gonna love your dad"...which does not help or reassure at all.

I am exactly with you on this point "I feel angry that the dementia is magnifying his foibles which I always hated and now trigger me"

I have learnt so much about Dementia since my mother has had it and what you said about magnifying foibles touched a nerve with me. I believe that, although Dementia is generally different in all sufferers, the person they were is still there in some ways (good or bad).

I get sad when I hear people say about the person/family member that he or she is a lovely sweet person, as they are so lucky that their PWD is like that and probably always was, in a way.

My mother was always a bit of a cold fish and could be hurtful with things she said plus she never kept any friends, as there was always something she didn't like about them. Now it's so hard for me to hear her feeling lonely and saying she has no friends. Sadly my dad died 25 years ago but my mum has forgotten all that and thinks she is feeling lonely because he's more recently died but she was always happy to be on her own. Although she moved across the road to be near my husband and I, she hardly saw her grandchildren in the 22 years she lived here while they were growing up (her choice and independence at the time saw to that, until 2 years ago when the vascular Dementia/Alzheimers started. !) but we accepted it as 'just her' and were always there to help her if need be (my husband doing DIY and gardening and me taking her out and shopping etc).

I have LPOA and now look after her finances, after she cut up her cards so no one could use them , including me I expect, when she started the Dementia, although I only helped her get cash out now and again.

I then stupidly but kindly told her I have an LPOA bank card and can get her money when she need it ....but proving she hasn't changed into this 'sweet old lady' that others talk about LOL, with her Dementia, now each time she gets in a mood she says "can I have that card you have so I can cut it up! "

I'm sure the magnifying of foibles brings out the nasty, awkward side that was always there in certain situations. I am also sure, well in my mums case that she has a selective memory that she strangely accesses occasionally - even though she can't remember anything much, even from years ago now... not just short term!

Although my husband and I do everything for her, including me cooking her meals every day and shopping for her bits ( as she has no idea how to do it any of it anymore) She still thinks she goes shopping and a gardener comes to do her gardening plus all the other things - Its quite funny at times ( well you have to have a laugh eh!) how she makes up stories of how all these things get done that we do for her. Anyway I could go on but was so pleased to hear that someone else feels the same.

Shes still my mum and was a kind mum, when I was young, so of course I do feel guilty regularly feeling like this and I do I understand the Dementia is not her fault but I do wish she would stay this nice old lady that she can be on some days.

 

[Hex]

Anger seems to be a common emotion in this thread. I have to hold my hands up and say, yes, me too. I have been angry for most things. The things my mum does out of character. The things she no longer does that made her a loving mum and nana. Not recognising her grandchildren. Her terrible mood swings. Then I will get home and guilt takes over. I know most of these things are the disease and not her fault and for the past six years as a family we have made excuses and get on in any way we can. Mum has lived with this disease for at least the past ten years. Before any of us had any idea, she hid it so well. Just over a month ago we had to make a hard decision and place her in a nursing home (she had other medical issues besides Alzheimer's ). By this time she really had no idea where she was and it could have been anywhere. She settled well and I had my first decent sleep in months. Sadly after only a week she died, suddenly from a heart attack. Now that feeling of anger has been replaced with numbness, grief and more guilt. We celebrated the life she lived before Alzheimer's with family and friends. Even in my darkest days I tried to think of the times she was still in our lives as mum and all the things she would do for us. It helps

 

[shirleywurly]

Please do not take this the wrong way everybody I know we all have this horrid illness in common with a family member but in a way you should be grateful for the support of family members. Some have No family help at all and are told because we do not work we should be a carer. I have done this for my partner for 30years and have now been given No option as I am now widowed the council will not help and mum is not able too look after herself. Sorry No disrespect ment xx

 

[Countryboy]

Been reading some of the threads just don’t see the point in getting Angry if you are lucky enough to reach the 3 score and 10 in all probably as the years go by you will get a medical problem and Dementia is high on the list I was first diagnosed with dementia at 57 I’m 75 now and the dementia hasn’t been a problem except for all the bureaucratic rubbish we have to deal with , when I turned 70 on que the other medical conditions started to kicked in had first heart attack and second attack a year later & diabetes type2 never saw the need to be angry over this we must remember that 50 years ago I wouldn’t have survived but I’m happy dancing along quietly at moment and still above ground

 

[Juliasdementiablog]

Some days I feel angry with the care home my mother is in. Angry with the care staff and the managers. Very occasionally I have shown my irritation and been a little grumpy, and immediately apologised. It's not the care staff's fault they don't get adequate training. I wish they knew how to respond to my mother's grief at being locked in instead of compound the problem by telling her things that make her feel bad about herself. She feels as if she is being punished. There are creative ways around this, and other care homes find ways to distract and support their residents so they never have to feel the distress my mother goes through regularly. I mostly feel sad.

 

[Trapisha]

Yes portia i do get angry and think why my mom she is such a kind caring person who always
makes me feel better if i have a worry or not well. i do look at people much older even though
she is in her eighties my friends mom is 92 and has nothing wrong with her and another lady
90 soon and is fine so i do know exactly what you mean !! Suppose its normal feelings that
the person you love most has this disease and you can't do anything to change it, every day
i get worried and anxious in case something new develops i would love to feel normal again
but can't imagine i ever will. Wish i could accept things more easily hope i can in future i
wouldn't wish it on anyone xx

 

[Countryboy]

I'm a person with DEMENTIA we all go to move on at some point So my take on Life is similar to Monty Python’s Song

Some things in life are bad
They can really make you mad
Other things just make you swear and curse
When you're chewing on life's gristle
Don't grumble, give a whistle
And this'll help things turn out for the best

And always look on the bright side of life
Always look on the light side of life

If life seems jolly rotten
There's something you've forgotten
And that's to laugh and smile and dance and sing
When you're feeling in the dumps
Don't be silly chumps
Just purse your lips and whistle, that's the thing

And always look on the bright side of life
Come on!
Always look on the right side of life

For life is quite absurd
And death's the final word
You must always face the curtain with a bow
Forget about your sin
Give the audience a grin
Enjoy it, it's your last chance anyhow

So, always look on the bright side of death
A-just before you draw your terminal breath

Life's a piece of s***
When you look at it
Life's a laugh and death's a joke, it's true
You'll see it's all a show
Keep 'em laughing as you go
Just remember that the last laugh is on you

And always look on the bright side of life
Always look on the right side of life

C'mon Brian, cheer up!

Always look on the bright side of life
Always look on the bright side of life

Worse things happen at sea, you know
Always look on the bright side of life

I mean, what have you got to lose
You know, you come from nothing, you're going back to nothing
What have you lost? Nothing!

Always look on the right side of life...

Nothing will come from nothing, you know what they say?
Cheer up you old b*****r, c'mon give us a grin!
There you are, see, it's the end of the film
Incidentally, this record is available in the foyer
Some of us have to got live as well, you know

 

[bonnybee]

Angry? No, I tend not to stress things I can’t change as I wouldn’t want emotion to cloud my judgement.

When my wife started to decline I did feel grief and sadness but these feelings are temporary and I just hope I have the strength of both mind and body to cope as the end stages develop. I won’t worry about problems, beyond organising our affairs, until any problems arise. In the meantime I just make sure we enjoy our lives together and make things as good as possible for my wife while she still has the capacity to enjoy things.

I tend to agree with everything you say Pete....my husband has early stages of dementia but day by day I can see its steadily getting worse. I am keeping a happy atmosphere for his sake, and just have to accept what comes on a day to day basis. Alzheimers Society so far have been very good, and it relieves my mind to know whatever problems that may arise in the future, they will be only a call away.
He also has terminal cancer - but we are so lucky to have had a long marriage and fond memories.

 

[karaokePete]

I tend to agree with everything you say Pete....my husband has early stages of dementia but day by day I can see its steadily getting worse. I am keeping a happy atmosphere for his sake, and just have to accept what comes on a day to day basis. Alzheimers Society so far have been very good, and it relieves my mind to know whatever problems that may arise in the future, they will be only a call away.
He also has terminal cancer - but we are so lucky to have had a long marriage and fond memories.

My wife is early stages Alzheimer's and she is on Donepezil and Memantine. Those meds improved her functioning and eased some disturbing symptoms like hallucinations and confabulation. As with you, the deterioration continues here as well, but the pace is so slow that we are now enjoying life more than we did pre-diagnosis. Due to this I've dumped fear, grief and anger at the door and daily remind my wife of our 'present' situation in an effort to help reassure her.
I wish you and your OH all the best.

 

[Motherof3]

I'm still angry with both my parents for the demands they placed on me and my siblings and the lack of planning - they absolutely stuck their heads in the sand and left a complicated estate which one of my brothers has only just managed to sort out, 17 months after mum died. My mum had Alzheimer's and I'm only just beginning to remember the best of her - lots of her Alzheimer behaviour terrified me, and I think this is because it triggered childhood memories of her having postnatal depression. They both had their quirks but were basically good parents.

I also get angry when anyone talks about older people needing care and 'wanting to maintain their independence'. One of my brothers is at the beck and call of an old friend of my mum's who is terminally ill. In many ways it's a sad story, she has no family, but she does have plenty of money and could afford to live in a really nice nursing home. Instead, my brother gets phone calls at all times about anything from her boiler not working to the batteries running out in her TV remote. It has a huge impact on his family. i know, it's his choice to do this, but it makes me so cross.

I am determined not to put my sons through this. I do not see how it is fair for a generation who could mainly afford to buy their own homes and benefit from things such as a decent NHS and free university education, to expect their children and grandchildren to give up their lives, jobs and any contributions to a pension pot in order to be long term carers.

 

[bonnybee]

My wife is early stages Alzheimer's and she is on Donepezil and Memantine. Those meds improved her functioning and eased some disturbing symptoms like hallucinations and confabulation. As with you, the deterioration continues here as well, but the pace is so slow that we are now enjoying life more than we did pre-diagnosis. Due to this I've dumped fear, grief and anger at the door and daily remind my wife of our 'present' situation in an effort to help reassure her.
I wish you and your OH all the best.

Thanks Pete...hubby is on Donepezil but cant say he has improved, rather going the other way. The main problem at the moment is short term memory, no aggro, but he does make a joke of everything I say in a childish manner. i.e. he doesnt take me seriously.... I suppose its better than other more worrying symptoms. I had to laugh today though - first he couldnt find his wallet and then he found it where he always puts it. I had put my boots on, thick coat, to take out bags of rubbish that had been gathering the past couple of days, due to the weather. I came back in, covered in snow - and standing right in front of me said I've found my wallet. He was so happy at finding it, and no comment on his snow covered wife. Meanwhile, I could have tripped and fallen and died of hyperthermia in the back garden and he would never have known.....ha ha.

 

[love.dad.but..]

Thanks Pete...hubby is on Donepezil but cant say he has improved, rather going the other way. The main problem at the moment is short term memory, no aggro, but he does make a joke of everything I say in a childish manner. i.e. he doesnt take me seriously.... I suppose its better than other more worrying symptoms. I had to laugh today though - first he couldnt find his wallet and then he found it where he always puts it. I had put my boots on, thick coat, to take out bags of rubbish that had been gathering the past couple of days, due to the weather. I came back in, covered in snow - and standing right in front of me said I've found my wallet. He was so happy at finding it, and no comment on his snow covered wife. Meanwhile, I could have tripped and fallen and died of hyperthermia in the back garden and he would never have known.....ha ha.

It isn't funny I know but it always slightly amused me that Dad would miss the obvious visually but was able to comment on a minute detail. Hope you have dried out.

 

[karaokePete]

Thanks Pete...hubby is on Donepezil but cant say he has improved, rather going the other way. The main problem at the moment is short term memory, no aggro, but he does make a joke of everything I say in a childish manner. i.e. he doesnt take me seriously.... I suppose its better than other more worrying symptoms. I had to laugh today though - first he couldnt find his wallet and then he found it where he always puts it. I had put my boots on, thick coat, to take out bags of rubbish that had been gathering the past couple of days, due to the weather. I came back in, covered in snow - and standing right in front of me said I've found my wallet. He was so happy at finding it, and no comment on his snow covered wife. Meanwhile, I could have tripped and fallen and died of hyperthermia in the back garden and he would never have known.....ha ha.

I hope you thawed out. Develop a thick skin cause empathy goes out the window when dementia comes in the door. We have to get used to living in their world, not only because that becomes the easiest thing to do, but because that’s the only world that exists for them.

 

[Chrismitch]

What hell we all go through. My wonderful father died and then my wonderful sister died. I cared for my abusive mother and then my abusive husband. My mother died and my husband is in care. I am now trying to heal myself by being kind to myself, treat myself and doing things I enjoy. I’ve just about got my life back. I feel sorry for my kids who never had a kind Gran or father. But they are doing ok. There is light at the end of the tunnel. Be kind to yourselves.

 

[Countryboy]

Hi Tony. I love your attitude. My husband's cousin, a lovely man, died from MS aged just 50. We sang that song as we scattered his ashes.
My father and my first husband both died aged 43. Life is not fair, it just is. Best wishes.

Hi Normaleila well my own immediately family not to bad Sister died 73, brother 76 dad 85 mum 93 both parents had dementia, however my Wife’s family weren’t so fortunate or lucky , all her three brothers died at young ages 38, 57, & 60 , her Mum aged 63 Dad 65 nephew aged age 5 as you said not always fair but having said that the wife has made it to 74 and going strong apart from her Heart attack that was a bit concerning especially when her Dad & two brothers died of heart attacks, but best not to worry or think about it we always say there’s no tomorrow only today and yesterday’s. We have been married 52 years this so must live life to full live every day as though its your last and one day you will be right,

Obviously were all different Take care Normaleila

 

[Shedrech]

I cared for my partner most of my life till he died, now I feel it should be my time.
But my mum had 2 strokes .. then I was pressurised into being her carer and told any money she has( including small amount of savings) i should keep for her care ...
I felt as thou I had No choice on the matter as was told council could not pay for her care as they didn't have the finances. .. I don't get restbite and left to my own devices banging my head against a brick wall for help and advise. Sorry this is so long just so fed up. Not mum's fault

hello @shirleywurly
and welcome to TP
I'm not surprised you feel so fed up - you have been amazing as a wife and daughter
I really don't understand how you could have been made to feel you have no choice but to give up your own life to care for your mum - the duty of care lies with the Local Authority and they should not be putting on pressure like this
please do go back to Adult Services and tell them your mum's condition has worsened and you need support if she is to be cared for at home - say you are close to carer breakdown and need some time to yourself, so home care visits and day care and some respite are needed
you, too, have a right to a carer's assessment
as for finances - whatever money your mum has is surely there for her use, to be used in her best interests - if she has no savings and little income, then the LA should at least part fund her care but it's not for the LA to refuse care so that she saves money
maybe a chat with one of the knowledgeable folk on the AS Helpline might give you some ideas for how to get the LA onside
0300 222 11 22
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

 

[yayagoddess]

I feel like WE have been cheated. I was cheated out of growing old with my husband...he was cheated out of seeing our grandson grow up. He was an amazing man. I met him my first year of high school...he was in his last. I guess I have to console myself in that we at least got to grow up together. I still can't believe it. Five freaking months from onset to death.