Hi, I’ve just joined and am very new to this all. Quick background, my parents live in N annex on the back of my house, we’ve always been a very close family. My mum was diagnosed with dementia in 2021. On 3rd November 2023 my lovely dad popped out to pick up my sister in law from work, but didn’t make it as his heart suddenly just stopped. From that moment I have been caring for my mum 24/7. She’s scared of being alone and can’t fully process everything. She’s developed a deep depression, anxiety and stopped sleeping. I haven’t been to bed since my dad went, social services just say it would be easier to just put her in a home, but she still knows us all and as an ex dementia specialist nurse she has some knowledge of what’s Halle one albeit very muddled. I feel like I’m drowning, I have no idea what I’m doing, I can’t get to talk to the doctor or anyone for details of what’s happening or how to handle it as mums with me always, and it frightens her hearing people talking. Any advice would be really gratefully received. I’m just winging it on a hope and a prayer! Thank you. Oh and huge apologies for any spelling mistakes, I’m typing in the dark, on my phone, with the brightness turned down and no glasses on! Hope some of this is legible!
Overwhelmed!
- Thread starter LizzylouWalton
- Start date
Welcome to the forum @LizzylouWalton
Common sense tells you you can`t continue in this way.
If you are unable to talk to your doctor, perhaps you could write or email them.
I see social services are in contact with you. Their advice is all they can give other than get help in the home.
It`s not enough to say your mother knows you. Most people who go into residential care know their close family members even if they sometimes get muddled.
Have you considered contacting the Admiral Nurses? They might be able to offer you support.
www.dementiauk.org
If your mother was a dementia specialist nurse you probably know about Admiral Nurses, but you have nothing to lose by contacting them.
Common sense tells you you can`t continue in this way.
If you are unable to talk to your doctor, perhaps you could write or email them.
I see social services are in contact with you. Their advice is all they can give other than get help in the home.
It`s not enough to say your mother knows you. Most people who go into residential care know their close family members even if they sometimes get muddled.
Have you considered contacting the Admiral Nurses? They might be able to offer you support.
What is an Admiral Nurse and how can they help?
Dementia UK is a charity that provides Admiral Nurses for families affected by dementia. Call our Dementia Helpline to find out how we can support you.
www.dementiauk.org
If your mother was a dementia specialist nurse you probably know about Admiral Nurses, but you have nothing to lose by contacting them.
Your mother must still be deep in the grips of grief, this is a very recent loss. Could you get her some grief counselling, someone who would visit at least initially and you could gently introduce her to?
Hello @LizzylouWalton
It sounds like your mum has reached the Shadowing stage of dementia when they want to keep someone in their sight literally every minute of the day. She may also have developed the fractured sleep pattern/day night reversal that is typical once their internal body clock is damaged and time becomes meaningless.
I suspect that this was developing before your dad died and it is now all coming out as her routine has been totally disrupted and she is bewildered and lost. Does she remember that her husband has died? If she doesnt, then its best not to keep reminding her as each time you tell her will be like the first time that she has heard.
The shadowing is a symptom of quite advanced dementia. It can be very difficult to manage at home because you have other things to do like housework, shopping, even sleeping and going for a wee. At this stage it usually needs more than one person to care for them and in a care home they would have someone around 24/7. Still knowing who relatives are is not a good indication of whether they need a care home. Not everyone forgets who their relatives are - my mum knew who we were right up to the end. The time when a care home should be considered is when their needs outweigh what you can deal with. Your mums dementia will continue to progress and her needs will only increase.
The general perception of a care home is one of failure or of uncaring abandonment, but it is not. You will still be involved, but more as an advocate and making sure that she is well looked after. You will still be able to take her for trips out shopping, for lunch, etc. My mum thrived in her care home, made friends and was happy. Many other members have found the same
It sounds like your mum has reached the Shadowing stage of dementia when they want to keep someone in their sight literally every minute of the day. She may also have developed the fractured sleep pattern/day night reversal that is typical once their internal body clock is damaged and time becomes meaningless.
I suspect that this was developing before your dad died and it is now all coming out as her routine has been totally disrupted and she is bewildered and lost. Does she remember that her husband has died? If she doesnt, then its best not to keep reminding her as each time you tell her will be like the first time that she has heard.
The shadowing is a symptom of quite advanced dementia. It can be very difficult to manage at home because you have other things to do like housework, shopping, even sleeping and going for a wee. At this stage it usually needs more than one person to care for them and in a care home they would have someone around 24/7. Still knowing who relatives are is not a good indication of whether they need a care home. Not everyone forgets who their relatives are - my mum knew who we were right up to the end. The time when a care home should be considered is when their needs outweigh what you can deal with. Your mums dementia will continue to progress and her needs will only increase.
The general perception of a care home is one of failure or of uncaring abandonment, but it is not. You will still be involved, but more as an advocate and making sure that she is well looked after. You will still be able to take her for trips out shopping, for lunch, etc. My mum thrived in her care home, made friends and was happy. Many other members have found the same
Thank you, we’ve tried some grief counselling, but she wasn’t very receptive and can’t follow the conversations. She just kept repeating that she’s so frightened of being alone. She also didn’t retain any info from the session, but I do think it is something we can try again. Thank you ☺️
thank you for your reply, you have quite literally hit the nail on the head and described everything exactly as it is. She doesn’t always remember he’s gone, but it’s more that she doesn’t want to. She asks constantly when he’s coming to take her home, or where is he. I don’t say he’s died, I just say he can’t come get her, or that he’s not here and she does know then as she reached for the ashes necklace I got her, and says she just hoped she was wrong. Should I say something different? My brother has taken this coming week as holiday, so we are going to look at some care homes, provisionally for respite at first. Thank you ☺️
Thank you, I’m ashamed to say I didn’t pay much attention to what mum did when she was working, so I don’t know what an admiral nurse is, but I will be looking into it today! Thank you ☺️
Hi there
I care for my husband who has Mixed Dementia,and I cared for my late ,lovely Mum who had Altzeimers Dementia.
When my brother passed away (aged 50) my Mum declined quite rapidly,the grief overtook everything and she constantly said he was waiting for her etc .After about a couple of months Mum stopped talking about him ,and on seeing him in photos just said “He’s dead”
I’m so sorry for the loss of your Dad,you must be grieving too .
My only advice is that the pain should most likely ease for Mum ,I’m no expert on matters relating to Dementia,but I feel that your Mums pain will ease gradually.
Take care please
I care for my husband who has Mixed Dementia,and I cared for my late ,lovely Mum who had Altzeimers Dementia.
When my brother passed away (aged 50) my Mum declined quite rapidly,the grief overtook everything and she constantly said he was waiting for her etc .After about a couple of months Mum stopped talking about him ,and on seeing him in photos just said “He’s dead”
I’m so sorry for the loss of your Dad,you must be grieving too .
My only advice is that the pain should most likely ease for Mum ,I’m no expert on matters relating to Dementia,but I feel that your Mums pain will ease gradually.
Take care please
It sounds like her memory of him having died is getting hazy. I think it likely that soon she will not remember at all. I think your replies to her are spot on
When you look at care homes, do mention that your mum is up all night. Many care homes will not tolerate this, even though it is a normal part of dementia progression. The care home that mum was in didnt bat an eye lid over this. They would make her tea and toast (she thought it was morning and wanted breakfast) and suggest she went back to bed, but if she didnt want to they would take her to the lounge where the others who were also up, and a member of the night shift would watch over them.
Thank you for sharing your own, difficult story. I’m so sorry you lost your brother so young! Thank you again ☺️
This is so lovely, and thank you for the suggestion. I’ll definitely mention this when we look around. As I’m disabled myself I have a carer in the morning to help with mum, and she also suggested not arranging appointments to visit but try a cold call. She said unless it’s shift changeover or mealtimes most decent homes should be happy for you to see how they are.
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