Struggling to cope

[Louhelp1234]

The CT scan often doesnt show problems in the early stage.
Sometimes it can take a while for a diagnosis.

Thank ever so much for always answering. You're so knowledgable.
Mum took it ok she was anxious but that didn't change after just maintained the same.
Psychiatric nurse putting referral in though to try and get mum some help as she lives alone and struggles with her tablets and to be honest I have doubts if she's eating properly.
Filled her freezer with food on Wednesday nothing has gone out of it. It's now Monday so that's alarming.
Hopefully mum will be able to get some help.
Thanks again xx

 

[Mumstillhere]

Thank ever so much for always answering. You're so knowledgable.
Mum took it ok she was anxious but that didn't change after just maintained the same.
Psychiatric nurse putting referral in though to try and get mum some help as she lives alone and struggles with her tablets and to be honest I have doubts if she's eating properly.
Filled her freezer with food on Wednesday nothing has gone out of it. It's now Monday so that's alarming.
Hopefully mum will be able to get some help.
Thanks again xx

 

[Mumstillhere]

Hi I'm new here and very interested in what you have written.
Have you tried to get meals on wheels for your mum?
I used to be a home help and went to man's house to make his meals.
My mum is 94 so has memories loss, just keep telling her everyday things .
My nan had dementia and upset mum quite a bit, but just remember the good times. It's a horrid and cruel disease

Try relax more

 

[Graybiker]

Hi Lou,
Wanted to reply as your mum seems so similar to mine. She was eventually referred to the memory clinic about 18 months after me first expressing concerns. There they decided it was all down to anxiety and depression. Two years and 3 scans later, they agreed it was Alzheimer's, though there was no definitive proof. They said the only way to be absolutely certain of Alzheimer's is with an autopsy, sorry
Mam has always been "a worrier" and I personally feel this deflected from the true diagnosis. I am no expert, all I will say is, you know your mam best, if things aren't right you need to tell them and get all the help you can.
I wish you well xx

 

[Louhelp1234]

Hi Lou,
Wanted to reply as your mum seems so similar to mine. She was eventually referred to the memory clinic about 18 months after me first expressing concerns. There they decided it was all down to anxiety and depression. Two years and 3 scans later, they agreed it was Alzheimer's, though there was no definitive proof. They said the only way to be absolutely certain of Alzheimer's is with an autopsy, sorry
Mam has always been "a worrier" and I personally feel this deflected from the true diagnosis. I am no expert, all I will say is, you know your mam best, if things aren'right you need to tell them and get all the help you can.
I wish you well xx

Thank you so much for replying both of you.
Yes Graybiker they do seem very similar.

Update on my mum psychiatric nurse referred her to social services re enable team who accepted referral and met my mum and myself. on Friday.
They have agreed to monitor my mum for 6 weeks giving her her medication and making sure she eats. From tomorrow Mum not happy as There's nothing wrong with her. But it's happening so that's that. I personally think it's a good thing she needs so much more care than I can give her. So felt really pleased that something was happening.
However this was short lived. Mums friend rang me in a panic Friday night she'd gone to my mums who had turned on the gas hob not lit it and the whole house smelt of gas. She turned it off and explained that my mum musnt do it again.
Went to my mums today
Keys were on the outside of the door.
My daughter opened door straight away smelt gas my mum had two gas rings on full not lit. I have no sense of smell as suffer with sinuses but daughter said smelt very strongly of gas. Turned it off explained to mum not to touch it .
Her answer was it's not my fault it's broke I'll just buy another one. Told her not to touch it.
Went to make her some lunch.
Ham was out of date
Went to make her microwave chips as that's what she wanted. Microwave plate has disappeared. She hasn't had it.
All plates and knives forks where dirty she'd put them used and dirty back in cupboard not sure if she thought they were clean.
Eventually managed to make something which when I was in the kitchen she told my daughter she wasn't hungry and tried to hide the food.
Going to phone social lady tomorrow hopefully she'll be able to help. As I'm really worried for her safety now. She needs so much more care than I can give her.
On a plus side at least she's got carer starting tomorrow.
At wits end.
Just out of curiosity how is your mum now sorry for asking.
Many thanks for your help and advice everyone xxx

 

[Louhelp1234]

Can't believe in just over a week my mum has gone down hill so quickly.
Kept turning gas hob on had to have it disconnected.
No concept of Money keep finding money everywhere.
Hiding food not eating.
Today she had her jeans on back to front. Didn't even realise.
She keeps going to cemetery to ask her mum and dad for help. Or to take her.
I do what I can I know it's not enough but I can't do anymore. I've arranged for carers to go in etc and do what I can but still feel so guilty.
This is so hard it's like living a nightmare I just wish I could wake up and have my mum back how she was.

 

[Saltydog]

Hi Louhelp1234

Reading your post echoed some of the feelings I am currently having. I don’t have anything to add as I am trying to find my way through but wanted to echo some of the sentiment that you are experiencing.

My mum is 66 - diagnosed Alzheimer’s. She is a former physiotherapist and is struggling to cope with the diagnosis. Being a health professional these things happen to others and not you. So this is a challenge in itself for her and it’s heartbreaking to watch.

I don’t recognise her and struggle to get through that treacle to try and find her.

I have tremendous feelings of guilt as I am an occupational therapist and know how to use therapy to maintain and reduce the progression. I started off doing lots of therapy with mum. She made good progress and her ACE scores improved by 3 points. But the constant pressure of working full time and coping with my own feelings proved too much and I couldn’t sustain the effort. I could no longer divide my time and gave up the therapy. As a result her cognition has worsened. There is also guilt with that too ! At present there are no services available for her at this stage. So it’s down to me and her partner is struggling to cope and is withdrawing. V complex situation.

The work I do is very stressful and all my free time was being taken up with trying to make things better as well as be a daughter. I am finding it difficult to know where to draw the line and find myself withdrawing.

I so understand that feeling of hating going around to visit. I feel awful saying it but it’s so true. I also struggle with conflicting feelings of guilt as my Mum isn’t even that bad at the moment and it’s gonna get a hell of a lot worse than it is currently. I should enjoy her while she is still good and make memories. The reality is that I am withdrawing.

I know that I need space and that I need to be well to give her the time she needs. As I have said to others - you need to look after yourself first so that you can then look after others!

I think reaching out to others is important and that’s why I have signed up to the site so that we can support each other.

I guess what I want to say to you louhelp is that you are not alone and these feelings are quite normal - even I have trouble accepting that ! But it is something that I am working on.

 

[Shedrech]

hello Saltydog
and welcome to TP
it really does help to be able to come here and share anything that's on your mind with folk who understand - so I'm glad you found the site
it takes time to find a routine that works for person and carers/family, and even then there are plenty of surprises along the way to enjoy or cope with - my mantra is 'expect the unexpected', my second is 'today is today, accept whatever it brings'; each of us is different and finds our own way through
I disagree with one thing: your mum's cognition hasn't worsened as a result of anything you have or haven't done, it's the nature of dementia that's responsible - each hiatus or plateau can lull us into thinking it will last, and it may for some time, not for all time sadly

 

[Saltydog]

hello Saltydog
and welcome to TP
it really does help to be able to come here and share anything that's on your mind with folk who understand - so I'm glad you found the site
it takes time to find a routine that works for person and carers/family, and even then there are plenty of surprises along the way to enjoy or cope with - my mantra is 'expect the unexpected', my second is 'today is today, accept whatever it brings'; each of us is different and finds our own way through
I disagree with one thing: your mum's cognition hasn't worsened as a result of anything you have or haven't done, it's the nature of dementia that's responsible - each hiatus or plateau can lull us into thinking it will last, and it may for some time, not for all time sadly

Thanks shedrech, I think that’s the worst part the false sense of hiatus and knowing it may not be here for long.

Both are good mantras and ‘today is today and accept what brings’ is a good way to frame things.

 

[Louhelp1234]

Hi Louhelp1234

Reading your post echoed some of the feelings I am currently having. I don’t have anything to add as I am trying to find my way through but wanted to echo some of the sentiment that you are experiencing.

My mum is 66 - diagnosed Alzheimer’s. She is a former physiotherapist and is struggling to cope with the diagnosis. Being a health professional these things happen to others and not you. So this is a challenge in itself for her and it’s heartbreaking to watch.

I don’t recognise her and struggle to get through that treacle to try and find her.

I have tremendous feelings of guilt as I am an occupational therapist and know how to use therapy to maintain and reduce the progression. I started off doing lots of therapy with mum. She made good progress and her ACE scores improved by 3 points. But the constant pressure of working full time and coping with my own feelings proved too much and I couldn’t sustain the effort. I could no longer divide my time and gave up the therapy. As a result her cognition has worsened. There is also guilt with that too ! At present there are no services available for her at this stage. So it’s down to me and her partner is struggling to cope and is withdrawing. V complex situation.

The work I do is very stressful and all my free time was being taken up with trying to make things better as well as be a daughter. I am finding it difficult to know where to draw the line and find myself withdrawing.

I so understand that feeling of hating going around to visit. I feel awful saying it but it’s so true. I also struggle with conflicting feelings of guilt as my Mum isn’t even that bad at the moment and it’s gonna get a hell of a lot worse than it is currently. I should enjoy her while she is still good and make memories. The reality is that I am withdrawing.

I know that I need space and that I need to be well to give her the time she needs. As I have said to others - you need to look after yourself first so that you can then look after others!

I think reaching out to others is important and that’s why I have signed up to the site so that we can support each other.

I guess what I want to say to you louhelp is that you are not alone and these feelings are quite normal - even I have trouble accepting that ! But it is something that I am working on.

Hi Saltydog

So sorry to hear about your mum. I totally understand all that you have said and can totally empathise with how your feeling.
Please don't blame yourself for your mums decline I'm no health professional but I really doubt it was your fault.
I get the guilt bit I feel guilty that I can't be my mums carer. Guilty that I don't want to be her carer. Guilty that I don't want to spend time with the stranger that I just want my mum back.
It's such a heartbreaking disease there are so many emotions involved for the loved ones and grief and guilt seem to be the main two for me I'm afraid.
Practically my mums half way through the re enablement assessment she's getting used to carers going in.
So at least for now I know she's having medication and eating they were the two main immediate concerns.
This finishes in a couple of weeks but she's been referred to social services who should then be taking on her care.
We're quite fortunate to have an amazing care coordinator that works with our doctors she's fantastic she's on hand to sort all the practical things and she's really easy to talk to you know you can say what's on your mind without being judged.
If she hadn't have come on board I think I would have been heading for a breakdown or something.
I still feel heartbroken when I think how fast it's all come on but am trying to throw my energy into my work.
I just get through each day best I can. Have no idea if I'll ever feel happy again and I think if I did I'd probably feel guilty for being happy when my mums so ill.
Her consultant appointment has been bought forward to 21st November so I suppose then at least she'll have an official diagnosis but it won't really change anything.
Many thanks for your lovely words and support it means a lot.
My heart goes out to you I totally understand how you are feeling big hugs and lots of love xxx

 

[Saltydog]

Thanks Lou,

Just having that contact is great with others has been great in itself. Even though you have so much on your plate - you still find time to give out to others Lou. Your words mean a lot too. I think that says a lot about you and also others on here.

Attending to your Mum’s basic needs is a great start. If that’s all you can give then that’s great. Recognise your limits that you can’t be her carer is also v important. Something that I am starting to work on. I do this day in day out with patients with dementia etc with my work as an OT in social services but I know now that I can’t do this with my own mum. I need to be her daughter not her therapist. And ... I can’t be both. Having tried and realising the toll it is having on me personally. Perhaps being more self aware would have helped in the first instance! So I think it is an important step knowing your limits.

The same is true for you I suspect.
It’s good to know you are having a good experience with social care - I find that v heartening to hear.

When I read the run up to the diagnosis for your mum , I can say we had a similar experience. Mum was also diagnosed with depression / anxiety at first last year and she went through CBT which as you can imagine would have been very difficult for her. I think in the early stages, it is difficult for GP’s to diagnose in the first instance. When I think about how long it has taken - about year to get a diagnosis and prior to that a year for family to realise what’s going on and my mum to recognise there was an issue. Depression is a common feature in dementia- Alzheimer’s also has this tendency to exacerbate the anxiety that was always present in my mum. It wasn’t until she was referred to the memory clinic, I realised my mum had been diagnosed with OCD when she was in her thirties- something I was completely unaware of until that momnent.

Anyway, it’s really lovely to have contact from you and your thoughts to - really appreciated. I have hope that we will feel happy again - I don’t think it will ever go away but just at this moment it feels so unwieldy and if I’m honest a piece of me has faded just like her. This is anticipatory grief and I’m not loving this ! but know it’s gonna be tough - all the feelings of guilt, overwhelmed, anxiety are all normal part of accepting a life change not of our choosing.

Take care and if you feel like sharing the results from the consultant, I would be interested to hear or indeed anything else.

Xxx






QUOTE="Louhelp1234, post: 1462196, member: 56604"]Hi Saltydog

So sorry to hear about your mum. I totally understand all that you have said and can totally empathise with how your feeling.
Please don't blame yourself for your mums decline I'm no health professional but I really doubt it was your fault.
I get the guilt bit I feel guilty that I can't be my mums carer. Guilty that I don't want to be her carer. Guilty that I don't want to spend time with the stranger that I just want my mum back.
It's such a heartbreaking disease there are so many emotions involved for the loved ones and grief and guilt seem to be the main two for me I'm afraid.
Practically my mums half way through the re enablement assessment she's getting used to carers going in.
So at least for now I know she's having medication and eating they were the two main immediate concerns.
This finishes in a couple of weeks but she's been referred to social services who should then be taking on her care.
We're quite fortunate to have an amazing care coordinator that works with our doctors she's fantastic she's on hand to sort all the practical things and she's really easy to talk to you know you can say what's on your mind without being judged.
If she hadn't have come on board I think I would have been heading for a breakdown or something.
I still feel heartbroken when I think how fast it's all come on but am trying to throw my energy into my work.
I just get through each day best I can. Have no idea if I'll ever feel happy again and I think if I did I'd probably feel guilty for being happy when my mums so ill.
Her consultant appointment has been bought forward to 21st November so I suppose then at least she'll have an official diagnosis but it won't really change anything.
Many thanks for your lovely words and support it means a lot.
My heart goes out to you I totally understand how you are feeling big hugs and lots of love xxx[/QUOTE]

 

[Louhelp1234]

Hi Salty

Hope you are well. Thanks for replying. Yes I agree it really helps having people in the same situation that you can talk to. I think unless you are living through this it's impossible to understand all the emotional aspects etc.
Our mums do unfortunately seem to be parallel don't they bless them.
I would never have said my mum seemed depressed but has been anxious most of her life at some level however the last couple of years and most recently the last 6 months she seemed excessively anxious even about minute things. I suppose that could be what you said.
For a while me and my family was just hoping it was some sort of nervous breakdown. I very much doubt this now
I'll be surprised if the consultant doesn't diagnose her With althziemers like the cpn. Has suggested she says they don't just base the diagnosis on the ct scan but observations from the cpn and the addenbrokes score which my mum only scores 50.

The diagnosis really is irrelevant I know on my heart my mum is really ill and whatever label she's given is just that. The only hope of a diagnosis is I suppose she can be given the correct medication.
Yes I think the care support so far is amazing I'm a bit hesitant to think what will happen when she changes to mainstream after the reinable nent finishes.
I had a lovely chat to the social worker that was going arrange mums assessments and explained that if they asked my mum she would say she can cope with everything but the reality is different.
She can't do most tasks for herself. The carers have to make sure she swallows her medication eats etc. I also said that I wanted to speak to the assessor in private as my mum would just get distressed and angry at me sitting saying everything she can't do but it needs to be done so having private chat before would be useful. She agreed. So hope that will work.
I hope your feeling a bit better if you need a rant or virtual hug don't hestitate to get in touch. In a way I'd imagine it's harder having some medical training.
I will of course let you know of any changes and diagnosis.
Take care and lots of love xxx

 

[Louhelp1234]

Hey Salty yes I can totally understand the anticipatory grief.
The hardest bit of all this is the loss of a relationship especially when you were close. I really miss our conversations we could talk for hours about nothing. Now that's all gone and it's so sad xxx

 

[Saltydog]

Hi Lou

Good to hear from you. Yeah you are so spot on about the loss of that relationship - I just feel it’s wading through treacle and my mum has really no sense of who she is anymore. I don’t recognise her as my mum anymore - i can’t scratch through that Alzheimer’s facade and everything seems to be on a very superficial level which is such a contrast to how she was. Occasionally, I catch a glimpse but it’s so fleeting and it’s gone as fast as it appeared and gradually that’s becoming less and less which is heartbreaking.

It’s interesting what you say about having a diagnosis as a label. It certainly is that. Recognising mum is ill first and for most. But as a previous peeps has stated. It’s very difficult to diagnose Alzheimer’s and only after autopsy. A consultant can only make a supposition from all the factors presented, as you have said, CT scan, cognitive tests , reported symptoms etc.

Sounds like you really have considered the impact of the assessment process when social care come to visit. I have always found it helpful when relatives feel they can chat beforehand to outline issues of most concern. Also, doing so may reduce the stress on your mum given that she is so anxious and also hopefully not harm your relationship with her by discussing sensitive issues in front of her. The assessor will be very skilled at reading the situation and hopefully tactful in picking out pertinent issues that need addressing without compromising your relationship with mum. He /she will attempt to involve mum as much as she is able to be involved to make an informed decision. This a key to getting a good foundation set.

Thanks for your supportive words and kindness. So helpful at this time - you would not believe !

Take care and love to you too
Xxx

 

[Jacs321]

Hi Lou

Good to hear from you. Yeah you are so spot on about the loss of that relationship - I just feel it’s wading through treacle and my mum has really no sense of who she is anymore. I don’t recognise her as my mum anymore - i can’t scratch through that Alzheimer’s facade and everything seems to be on a very superficial level which is such a contrast to how she was. Occasionally, I catch a glimpse but it’s so fleeting and it’s gone as fast as it appeared and gradually that’s becoming less and less which is heartbreaking.

It’s interesting what you say about having a diagnosis as a label. It certainly is that. Recognising mum is ill first and for most. But as a previous peeps has stated. It’s very difficult to diagnose Alzheimer’s and only after autopsy. A consultant can only make a supposition from all the factors presented, as you have said, CT scan, cognitive tests , reported symptoms etc.

Sounds like you really have considered the impact of the assessment process when social care come to visit. I have always found it helpful when relatives feel they can chat beforehand to outline issues of most concern. Also, doing so may reduce the stress on your mum given that she is so anxious and also hopefully not harm your relationship with her by discussing sensitive issues in front of her. The assessor will be very skilled at reading the situation and hopefully tactful in picking out pertinent issues that need addressing without compromising your relationship with mum. He /she will attempt to involve mum as much as she is able to be involved to make an informed decision. This a key to getting a good foundation set.

Thanks for your supportive words and kindness. So helpful at this time - you would not believe !

Take care and love to you too
Xxx

Hi salty dog, interested to read your posts. As an OT myself with a mother who has recently been diagnosed I fully relate to the feelings. Something very unnerving as a health professional. I found myself yesterday doing an 'assessment' of her showering to try to get a picture of her needs as she is in total denial and my stepfather is hiding how bad things are. Spends her entire life in bed but denies the fact whenever she is challenged on it. Had lunch with her today and ended up obsessing about dysphagia as she was coughing. Just an issue with her damn denture it seems. The anticipatory grief is overwhelming me at present. They have referred her to cognitive stimulation therapy but doubt I will get her there unless I strong arm her out of bed. The though of what is to come and how I manage her at home for as long as possible with a stressful and full time plus job is terrifying me.

 

[Louhelp1234]

Hi Lou

Good to hear from you. Yeah you are so spot on about the loss of that relationship - I just feel it’s wading through treacle and my mum has really no sense of who she is anymore. I don’t recognise her as my mum anymore - i can’t scratch through that Alzheimer’s facade and everything seems to be on a very superficial level which is such a contrast to how she was. Occasionally, I catch a glimpse but it’s so fleeting and it’s gone as fast as it appeared and gradually that’s becoming less and less which is heartbreaking.

It’s interesting what you say about having a diagnosis as a label. It certainly is that. Recognising mum is ill first and for most. But as a previous peeps has stated. It’s very difficult to diagnose Alzheimer’s and only after autopsy. A consultant can only make a supposition from all the factors presented, as you have said, CT scan, cognitive tests , reported symptoms etc.

Sounds like you really have considered the impact of the assessment process when social care come to visit. I have always found it helpful when relatives feel they can chat beforehand to outline issues of most concern. Also, doing so may reduce the stress on your mum given that she is so anxious and also hopefully not harm your relationship with her by discussing sensitive issues in front of her. The assessor will be very skilled at reading the situation and hopefully tactful in picking out pertinent issues that need addressing without compromising your relationship with mum. He /she will attempt to involve mum as much as she is able to be involved to make an informed decision. This a key to getting a good foundation set.

Thanks for your supportive words and kindness. So helpful at this time - you would not believe !

Take care and love to you too
Xxx

Hi Salty
Big hugs good to hear from you I totally understand all what you said about the relationship I constantly look for a glimmer of hope that things are going to be ok. Sometimes I seem to set myself up for a fall though looking for a sign that maybe my mums in there somewhere. When she's calm we sometimes manage a conversation but it's nothing like it used to be just meaningless small talk, similar to what you'd chat to a stranger at the bus stop. My mum used to be my first call in a crisis the one I knew would always have my back. That would always offer words of wisdom. Although now I'm sure she still cares and would love to be that person she just struggles to be able to be if that makes sense.
Met my mums new social worker today she's lovely had lovely chat with her before so went through all the problems she's having etc beforehand so that there was no uncomfortable conversation with in front of my mum.
The social worker explained to my mum that the re enable team was just for 6 weeks and it was coming to an end but that new carers would be coming and they would look after her.
She wasn't very happy bless her she's got attached to the carers despite her totally refusing to have them in the house originally. She doesn't like change so wasn't happy but I'm sure couple of weeks into the care package and she'll be fine.
She seems a lot calmer now Drs upped her anti depressants dosage it hasn't like I hoped done anything to improve her memory or ability to cope. Was hoping stupidly that once she was on the right anti depressants she'd be better that it was the pseudo dementia thing they said it was last time. Realistically I knew it wasn't an option but you have to hope.

How's your mum doing hope she's as well as she can be. Hope your feeling bit better and not being as hard in yourself. The guilt monster has a lot to answer for. This whole journey seems to be a total emotional rollercoaster doesn't it.
Anyway take care big hugs xxx

 

[Louhelp1234]

Hi salty dog, interested to read your posts. As an OT myself with a mother who has recently been diagnosed I fully relate to the feelings. Something very unnerving as a health professional. I found myself yesterday doing an 'assessment' of her showering to try to get a picture of her needs as she is in total denial and my stepfather is hiding how bad things are. Spends her entire life in bed but denies the fact whenever she is challenged on it. Had lunch with her today and ended up obsessing about dysphagia as she was coughing. Just an issue with her damn denture it seems. The anticipatory grief is overwhelming me at present. They have referred her to cognitive stimulation therapy but doubt I will get her there unless I strong arm her out of bed. The though of what is to come and how I manage her at home for as long as possible with a stressful and full time plus job is terrifying me.

Big hugs jacs it certainly sounds like they are needed hope things get a little easier for you. Anticipatory Grief is an horrible emotion and can strike when you least expect it xxx

 

[Louhelp1234]

Hi Lou

Good to hear from you. Yeah you are so spot on about the loss of that relationship - I just feel it’s wading through treacle and my mum has really no sense of who she is anymore. I don’t recognise her as my mum anymore - i can’t scratch through that Alzheimer’s facade and everything seems to be on a very superficial level which is such a contrast to how she was. Occasionally, I catch a glimpse but it’s so fleeting and it’s gone as fast as it appeared and gradually that’s becoming less and less which is heartbreaking.

It’s interesting what you say about having a diagnosis as a label. It certainly is that. Recognising mum is ill first and for most. But as a previous peeps has stated. It’s very difficult to diagnose Alzheimer’s and only after autopsy. A consultant can only make a supposition from all the factors presented, as you have said, CT scan, cognitive tests , reported symptoms etc.

Sounds like you really have considered the impact of the assessment process when social care come to visit. I have always found it helpful when relatives feel they can chat beforehand to outline issues of most concern. Also, doing so may reduce the stress on your mum given that she is so anxious and also hopefully not harm your relationship with her by discussing sensitive issues in front of her. The assessor will be very skilled at reading the situation and hopefully tactful in picking out pertinent issues that need addressing without compromising your relationship with mum. He /she will attempt to involve mum as much as she is able to be involved to make an informed decision. This a key to getting a good foundation set.

Thanks for your supportive words and kindness. So helpful at this time - you would not believe !

Take care and love to you too
Xxx

Hi Salty
How do you cope with your mum being so young my mums more or less the same age and I'm struggling this week xxx

 

[Saltydog]

Hi Salty
How do you cope with your mum being so young my mums more or less the same age and I'm struggling this week xxx

Hiya Lou

Good to hear from you as always it’s just nice to be able to share with you and others.

Truth is Lou, I am not coping well with it tbh. It comes and goes, this week has been better and I have been able to spend some time with her and put my emotions to one side. My boyfriend and I took her to the local fireworks display. Getting her out through the door was interesting! She didn’t want to go and spoke of indifference to the suggestion of going out which made me doubt myself as to whether I was making her go just I wanted to go.

She required a lot of prompting to wear suitable clothes ! We had court shoes and very ambitiously dressed for the weather ! Had to tell her we would be in a field and it would be cold and muddy. Although, on the face of it, all her clothes were on and correct with a coat but the subtlest difficulties of grasping what was required for the event were evident. Quite, in contrast to how she would normally approach things when she was well.


At first, it was difficult and I kept babbling making up conversation to fill the gaps which probably was noise to my mum given that I needed to work hard to explain things. My boyfriend said that I should just chill and let her be next time! Actually that would have been the right approach.

The great thing was that the event didn’t require her to engage verbally. She loved the colours of the fireworks and the heat of the bonfire. The village crowd with small children. There was enough to fill the senses alone. I guess what I learned was I must not try too hard. Mum was buzzing afterwards and her partner, who stayed behind, also commented that mum appeared to enjoy it. I still gave myself a hard time even so for putting my insecurities at the forefront - trying to engage her, making it nice .. safe etc.

One thing that I did find amusing was she told me off for holding onto her arm! Funnily enough, she has always told me off for that as long as I can remember! ‘I’m not that doddery!’ Truth was though, I was worried about losing her with the flow of the crowd when we exited the field. But I’m sure she would have been fine - it was a very safe, local event.

The age thing is hard at 66 years and I’m 37. It’s something that my peers and my friends of my age have yet to experience at this life stage. And I hope they don’t cos I would never want that for anyone. But we all have difficult times in our lives and theirs is no different and that’s how I frame it. It was a pants year this year as my dad also had a stroke (parents are divorced) so that was difficult realising your parents are getting old. Fortunately, he is very independently minded and sought support himself without encroaching too much on me. The week he had the stroke was the week my mum was diagnosed with Alzheimer’s. One the worst weeks ever! On top of that my brother got very depressed and had a psychotic episode a few months later and was almost sectioned. I am in no doubt that my brother’s depression was a reaction. Illness has profound effects - not just for the individual but also those around too.

I don’t know how I kept going - I put it to one side and on hold for 6 months. It is only now that things are a bit more stable that things are coming to the surface.

I have rambled on and on about my stuff and didn’t mean to go on. Just wanted to share those things I learned really in the vague hope that it may help others and you too.

It’s good that your mum has come round to the idea of having carers. I think it’s good that she was able to bond with them. A care package can really reduce the anxiety for the person and also the family, if done well. Hopefully you are feeling the effects of this too.

Lots of love

Xxx

 

[Saltydog]

Hi salty dog, interested to read your posts. As an OT myself with a mother who has recently been diagnosed I fully relate to the feelings. Something very unnerving as a health professional. I found myself yesterday doing an 'assessment' of her showering to try to get a picture of her needs as she is in total denial and my stepfather is hiding how bad things are. Spends her entire life in bed but denies the fact whenever she is challenged on it. Had lunch with her today and ended up obsessing about dysphagia as she was coughing. Just an issue with her damn denture it seems. The anticipatory grief is overwhelming me at present. They have referred her to cognitive stimulation therapy but doubt I will get her there unless I strong arm her out of bed. The though of what is to come and how I manage her at home for as long as possible with a stressful and full time plus job is terrifying me.

Hi Jac, it’s so lovely to hear from you and was interested to know you are feeling similar. I was feeling all alone as an OT navigating these waters , as professionals, we are supposed to know what to do ! But truth is I am struggling with this. Like you, I find myself, without thinking, constantly assessing my mum. I jump on subtle changes which is not helpful thinking. I have learned that I need to step back and try and be a daughter. But that’s easier said than done. You can take the girl out of OT but not the OT out of the girl!

It’s natural to worry about juggling work full time and whether you will be able to cope. You need to give yourself permission for time out from mum when you need it , that way you can give yourself space from work but also time out from mum without it feeling like work all the time.

Unfortunately, I’m not the best person to ask as I am currently having some time out from work to be able to grieve. My GP was super helpful and has been very supportive in almost giving me permission for time out and that included fine away from mum - 5 weeks to be exact. I live locally to her and thankfully her partner took her away for a week on holiday which made things easier and justified me distancing myself. My GP said something interesting ... she said that in her experience no health professionals are great at dealing with this stuff when it lands on our doorstep! We can’t employ professional distance in these situations. Learning how to be a daughter is tough for me - something that I was never that great at tbh.. hate shopping, make up etc ... all
The things my mum loves ! That said we do have dogs and walking in common so have decided that’s my time when I can see mum. Doing the normal everyday routine walk with her and her dog Jessie. It’s what we have always done and I think it may be in this case the simple things are the best and matter. It’s something that we both have in common, it’s exercise, it’s getting her out and first and foremost it’s what we have always done together - mundane but important.

Telling my colleagues was really helpful in the first instance. I am so fortunate that I work in health and that my colleagues understand the impact of caring from someone who has dementia. I count my blessings. I had multiple triggers that forced me to take time out - moved from up country to be closer to my mum, dad having a stroke, job change, complex and full on patient caseload, Home change and brother being unwell.... so time out now is enabling me to catch up.

If you feel able, it may be worth chatting to your supervisor and requesting some support if you are struggling to cope. They, perhaps, can adjust your caseload or at least make regular contact time for discussions about cases that you may be finding challenging at this time.

I think reaching out to the forum has been helpful for me - Just finding you has been invaluable.
I think you and I are in quite a unique situation, as others that are in the caring professions, typical support groups aimed at carers don’t always feel a good fit for health professionals and a lot of the literature out there is aimed at those who have little or no experience of dementia.

I hope that my post has been helpful even just to know there is a fellow OT out there. I would be really happy to chat with you and also interested to find out how things are going if you feel able to share.

In the meantime, take care Jac, thinking of you xxx