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Raft at sea and no oars

chapwoman

Registered User
Jan 24, 2022
16
0
hi there,
my mum was diagnosed with dementia at the end of 2019 and since then the chaos that has ensued is totally exhausting. The worst thing is that my dad has become so sad that not only am i trying to keep my mum stimulated, I'm also trying to prevent my dad from sinking into a deep dark hole of despair. They have been together since they were both 17 year olds like a pair of old hiking boots........hiking through life together. I am struggling to know how to help them and have some sort of existence myself. The biggest problem is that my mum doesn't know that she has dementia because owing to her personality my father and I decided that she probably wouldn't cope very well knowing. However we now have a moral dilemma in that she has begun to say that she thinks that there is something wrong with her mind and that she remembers being more capable in the past. We are going to have a family meeting but at the end of the day I feel that the decision lies with me and my father as we are her only carers. The other huge problem is that both my parents have been very insular all their lives and so have no friends and have a fear of any outsiders bar the family. Subsequently the situation is complicated by the fact that the only person they trust is me and I am also the only person who they will allow to help them. I feel sometimes like my shoulders are not wide enough for the mammoth task ahead of me. This is the loneliest place on earth and certainly the saddest. To be looking at the person who cared for me all her life now in such a desperate state is the most painful feeling I've ever experienced. Sadly she had breast cancer at the beginning of 2019 and had to have a mastectomy and then had the diagnosis of dementia. I kind of wished she had been taken by the cancer rather than this slow wicked disease. Poor mum and poor dad.
 

DreamsAreReal

Registered User
Oct 17, 2015
263
0
Hello @chapwoman I feel sad for you all, it’s been one blow after another since 2019 by the sound of it! No wonder you feel a bit overwhelmed.

Try not to dwell too much on what may or may not happen in the future, just deal with the things that need your attention now (if you can). You’re not alone in having parents that don’t want anyone to help but you, it’s quite common. I couldn’t get my mum to accept any outside help for a long time but in the end events take over and they need to accept outside help or go without!

Keep reading and posting here, you’ll find it very helpful.

edit: lots of people with dementia (pwd) don’t remember their diagnosis anyway, even if you do tell them. My mum was outraged if anyone mentioned dementia so if the subject comes up I either tell her she’s got a problem with her memory or sometimes I say she’s got a thing called Vascular Disease which makes her confused and affects her memory. I think she knows really, but doesn’t want to acknowledge it. If you haven’t already, have a read of Compassionate Communication (link in my signature). It can be useful.
 
Last edited:

HardToLetGo

Registered User
Oct 10, 2020
67
0
hi there,
my mum was diagnosed with dementia at the end of 2019 and since then the chaos that has ensued is totally exhausting. The worst thing is that my dad has become so sad that not only am i trying to keep my mum stimulated, I'm also trying to prevent my dad from sinking into a deep dark hole of despair. They have been together since they were both 17 year olds like a pair of old hiking boots........hiking through life together. I am struggling to know how to help them and have some sort of existence myself. The biggest problem is that my mum doesn't know that she has dementia because owing to her personality my father and I decided that she probably wouldn't cope very well knowing. However we now have a moral dilemma in that she has begun to say that she thinks that there is something wrong with her mind and that she remembers being more capable in the past. We are going to have a family meeting but at the end of the day I feel that the decision lies with me and my father as we are her only carers. The other huge problem is that both my parents have been very insular all their lives and so have no friends and have a fear of any outsiders bar the family. Subsequently the situation is complicated by the fact that the only person they trust is me and I am also the only person who they will allow to help them. I feel sometimes like my shoulders are not wide enough for the mammoth task ahead of me. This is the loneliest place on earth and certainly the saddest. To be looking at the person who cared for me all her life now in such a desperate state is the most painful feeling I've ever experienced. Sadly she had breast cancer at the beginning of 2019 and had to have a mastectomy and then had the diagnosis of dementia. I kind of wished she had been taken by the cancer rather than this slow wicked disease. Poor mum and poor dad.
Hi keep posting, this forum kept me sane through the really difficult times and still is a comfort. It's really hard, ringing the Admiral Nurse helpline was a good place to explore ways forward, none of which are necessarily easy. Talk to the GP for medication review and referrals to social care maybe just to introduce some limited carer support (my Mum was much less anxious on the right meds and still is) . I know it feels like a lonely road, sadly its a well travelled one, everyone here very supportive, take care of yourself, keep posting🌻
 

Sue741215

Registered User
Oct 18, 2019
71
0
I'm so sorry to hear of your situation - I hope that you can access some local help if only to talk over your situation. You may find it useful to go to a local carers' group even if your parents are not interested in going as you will get support and information about local sources of help. I agree with the previous writer that the only way to cope is to try not to worry about the future and try to make the best of the present.

I truly believe it is as important to take care of yourself as it is to take care of your mum and dad - try to reach some balance to include treats for them and treats for yourself. It sounds as though your mum is not too bad currently and hopefully you can enjoy some time with them but you also need time for yourself.

I wonder if your dad might be jolted out of his despondency if you shared your own and make it clear that you need his help if you are to continue to care for your mum properly (apologies if you have already tried this and it didn't work - only you know your dad.) If you need outside help and it is available be firm in deciding what help it is appropriate for you to provide and in letting them know that they need to use other sources of help. Remember it is in everyone's interest for you not to burn out.

I hope you can get your dad onside - or if you think he is really depressed perhaps you could have a quiet word with his doctor especially if he has a routine appointment coming up - I am assuming that he would not respond to a suggestion from you to get help with the depression.

My husband also does not accept that he has dementia so, like the previous responder I talk about memory problems and like your mum I believe that underneath he knows that he has a problem. Who can blame them for not wanting to face up to it.

When my mum had dementia I found reading the book Contented Dementia was helpful - if only for the advice that it is ok to lie to dementia sufferers for their benefit - going along with their take on things rather than correcting them when their reality is different from ours.

One thing I say to myself every day is 'Don't sweat the small stuff' and this does seem to help.

Sorry about this long response but I really feel for you and please, please find a way of looking after your own needs if you can.
 

MartinWL

Registered User
Jun 12, 2020
1,961
0
65
London
One tiny tip you might try is not to refer to dementia but to talk about Alzheimers disease instead ( even if i not accurately)., It has a less alarming ring to it. People think of dementia as madness, which is the etymology of the word, which may cause more anxiety than talking about a disease. A disease sufferer deserves sympathy and support whereas some people might associate being demented with a need to be locked up. I have made it my habit never to use the d word with my father and it seems to provoke a less angry reaction.
 

canary

Registered User
Feb 25, 2014
18,140
0
South coast
One tiny tip you might try is not to refer to dementia but to talk about Alzheimers disease instead
I went one stage further with mum and just referred to "your poor memory". She understood what Alzheimers was and would have been upset and angry if we had said it.
The point is, though @chapwoman that with dementia you have to learn to say things that do not distress them even if they are not strictly true.
 

Bunpoots

Volunteer Host
Apr 1, 2016
6,281
0
Nottinghamshire
By the time my dad was diagnosed with dementia he had already helped to care for 3 other family members with the disease so was well-aware of what was in store for him. He was on his own by then and had become more dependent on me for his social life more than anything in the early stages. I know what it is to need broad shoulders!

As time went on dad forgot about his diagnosis so I used to refer to his “colander brain” when he got confused or overwhelmed and we’d laugh and he’d reply “I’d forget my head if it was loose!” It didn’t address the problem but it did break the tension.

It is awful to watch someone struggle with something they’d have been able to do with their eyes shut in the past. I gradually introduced “a friend of mine who needs a little job to make ends meet” to help him accept care when it was needed. She used to do a bit of gardening and housework or just have a coffee and a chat and check everything was ok. We increased the number of hours and tasks when needed. I didn’t think he’d accept anyone @chapwoman - but he surprised me..
 

chapwoman

Registered User
Jan 24, 2022
16
0
Thank you all so much for your kind words and advice. I absolutely agree that the word dementia has somewhat of a victorian asylum ring about it and that there are better and kinder ways to describe the problem. My dad mentioned the word dementia to my mum and was suprised when she became very agitated and upset with him. The most annoying thing about this situation is that my father does what he wants even though we had agreed that we were not going to tell mum about her diagnoses. He doesn't work with me at all, in fact he doesn't communicate at all and has even at times become angry and frustrated and taken it all out on me. I would say that he is making the situation ten times worse and that if he wasn't in the picture I would be able to get some semblance of order to this chaos. He got really angry with me because at the beginning of Covid I was shopping, cooking, sorting medication etc etc......He felt like I had taken total control over their lives. I then took more of a back seat and was then accused of leaving him to hold the fort. Damned if I do and damned if I don't. We are very slowly beginning to work together but time is of the essence and i wish he would just go with the flow and learn to enjoy every precious moment he has with mum even though at times she is the most obnoxiously behaved person on this planet!!!!! The worst thing would be for him to one day have regrets.
 

Infinite

Registered User
Aug 22, 2021
18
0
hi there,
my mum was diagnosed with dementia at the end of 2019 and since then the chaos that has ensued is totally exhausting. The worst thing is that my dad has become so sad that not only am i trying to keep my mum stimulated, I'm also trying to prevent my dad from sinking into a deep dark hole of despair. They have been together since they were both 17 year olds like a pair of old hiking boots........hiking through life together. I am struggling to know how to help them and have some sort of existence myself. The biggest problem is that my mum doesn't know that she has dementia because owing to her personality my father and I decided that she probably wouldn't cope very well knowing. However we now have a moral dilemma in that she has begun to say that she thinks that there is something wrong with her mind and that she remembers being more capable in the past. We are going to have a family meeting but at the end of the day I feel that the decision lies with me and my father as we are her only carers. The other huge problem is that both my parents have been very insular all their lives and so have no friends and have a fear of any outsiders bar the family. Subsequently the situation is complicated by the fact that the only person they trust is me and I am also the only person who they will allow to help them. I feel sometimes like my shoulders are not wide enough for the mammoth task ahead of me. This is the loneliest place on earth and certainly the saddest. To be looking at the person who cared for me all her life now in such a desperate state is the most painful feeling I've ever experienced. Sadly she had breast cancer at the beginning of 2019 and had to have a mastectomy and then had the diagnosis of dementia. I kind of wished she had been taken by the cancer rather than this slow wicked disease. Poor mum and poor dad.
Oh my heart goes out to you you have done Sooooo well to survive all this sadness & your reaction with your mums cancer is understandable totally have you had a carers assessment you must get help somehow if you havnt you are very important there's some help out there although it's spread thinly sending you A MASSIVE HUG & love to all
 

chapwoman

Registered User
Jan 24, 2022
16
0
Oh my heart goes out to you you have done Sooooo well to survive all this sadness & your reaction with your mums cancer is understandable totally have you had a carers assessment you must get help somehow if you havnt you are very important there's some help out there although it's spread thinly sending you A MASSIVE HUG & love to all
Thankyou so much for your kind words. We haven't as yet had a carers assessment but have an appointment to see a lady who works as a dementia adviser. I'm sure she will help us to get as much help with mum as possible. My father has finally agreed that we need help because until now he has been so obstructive. I kept telling him that he needs to get power of attorney but his response was that he would do it when he is ready. Mums deterioration has recently been very rapid and I think he realises that time is against us. Thankyou for your hug.........very much needed. May I ask what your situation is.
 

Infinite

Registered User
Aug 22, 2021
18
0
Thankyou so much for your kind words. We haven't as yet had a carers assessment but have an appointment to see a lady who works as a dementia adviser. I'm sure she will help us to get as much help with mum as possible. My father has finally agreed that we need help because until now he has been so obstructive. I kept telling him that he needs to get power of attorney but his response was that he would do it when he is ready. Mums deterioration has recently been very rapid and I think he realises that time is against us. Thankyou for your hug.........very much needed. May I ask what your situation is.
Thankyou so much for your kind words. We haven't as yet had a carers assessment but have an appointment to see a lady who works as a dementia adviser. I'm sure she will help us to get as much help with mum as possible. My father has finally agreed that we need help because until now he has been so obstructive. I kept telling him that he needs to get power of attorney but his response was that he would do it when he is ready. Mums deterioration has recently been very rapid and I think he realises that time is against us. Thankyou for your hug.........very much needed. May I ask what your situation is.
Hi Chapwoman your welcome my husband has frontal lobe Dementia it's made every negative part of his personality worse he's insular never shows any real thanks for what I do .I've never done such a thankless job & I worked as a auxiliary nurse for many years enjoyed it very much. STUBBORN it's not what a person can't do it's what they WONT Do simple things even like walk with footwear on properly eg wearing slippers as mules when he has serious mobility issues .
 

Vanessa Terry

Registered User
Sep 27, 2021
18
0
hi there,
my mum was diagnosed with dementia at the end of 2019 and since then the chaos that has ensued is totally exhausting. The worst thing is that my dad has become so sad that not only am i trying to keep my mum stimulated, I'm also trying to prevent my dad from sinking into a deep dark hole of despair. They have been together since they were both 17 year olds like a pair of old hiking boots........hiking through life together. I am struggling to know how to help them and have some sort of existence myself. The biggest problem is that my mum doesn't know that she has dementia because owing to her personality my father and I decided that she probably wouldn't cope very well knowing. However we now have a moral dilemma in that she has begun to say that she thinks that there is something wrong with her mind and that she remembers being more capable in the past. We are going to have a family meeting but at the end of the day I feel that the decision lies with me and my father as we are her only carers. The other huge problem is that both my parents have been very insular all their lives and so have no friends and have a fear of any outsiders bar the family. Subsequently the situation is complicated by the fact that the only person they trust is me and I am also the only person who they will allow to help them. I feel sometimes like my shoulders are not wide enough for the mammoth task ahead of me. This is the loneliest place on earth and certainly the saddest. To be looking at the person who cared for me all her life now in such a desperate state is the most painful feeling I've ever experienced. Sadly she had breast cancer at the beginning of 2019 and had to have a mastectomy and then had the diagnosis of dementia. I kind of wished she had been taken by the cancer rather than this slow wicked disease. Poor mum and poor dad.
No wonder you feel overwhelmed. Anybody would feel like that dealing with what you are having to deal with. I went to my gp and literally broke down saying that I didn’t know which way to go. My mum has got Alzheimer’s and my dad is 81 and had a stroke. So I moved in to look after them. I have now got a support worker for me. A separate support worker from my parents. You need a life line to help you. X
 

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