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By (user no longer on site) OP
over a year ago
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My nan has been suffering with this for about 3 to 4 years now.
She can still hold conversations and walk aided with her walker.
Recently she has been having up and down days, really tired, not eating properly feeling sick and just no energy, then other days she's very chatty and just happy in herself.
I'm really worrying about her recently when I see her on her down days and makes me always think the worst is coming soon.
Has anybody had experience with this disease and experienced similar and offer me some reassurance?
I'm just hoping that it's because it's the winter months tbh and everyone gets abit more tired and lethargic lol. |
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By (user no longer on site)
over a year ago
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"My nan has been suffering with this for about 3 to 4 years now.
She can still hold conversations and walk aided with her walker.
Recently she has been having up and down days, really tired, not eating properly feeling sick and just no energy, then other days she's very chatty and just happy in herself.
I'm really worrying about her recently when I see her on her down days and makes me always think the worst is coming soon.
Has anybody had experience with this disease and experienced similar and offer me some reassurance?
I'm just hoping that it's because it's the winter months tbh and everyone gets abit more tired and lethargic lol."
If her condition is deteriorating, it will depend on what type of dementia. |
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Currently going through this with my nanna OP and have been for the last few years. She’s now at a stage where she’ll sleep continuously for 3/4 days and only be awake for 1-2 days at a time, not always knowing who and where she is. It’s incredibly tough emotionally but all you can do is spend time with her and make the most of the good days x |
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By (user no longer on site) OP
over a year ago
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"Currently going through this with my nanna OP and have been for the last few years. She’s now at a stage where she’ll sleep continuously for 3/4 days and only be awake for 1-2 days at a time, not always knowing who and where she is. It’s incredibly tough emotionally but all you can do is spend time with her and make the most of the good days x"
It's absolutely heartbreaking seeing your loved ones like it. I'm sorry to hear about your nan x |
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By (user no longer on site) OP
over a year ago
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"My nan has been suffering with this for about 3 to 4 years now.
She can still hold conversations and walk aided with her walker.
Recently she has been having up and down days, really tired, not eating properly feeling sick and just no energy, then other days she's very chatty and just happy in herself.
I'm really worrying about her recently when I see her on her down days and makes me always think the worst is coming soon.
Has anybody had experience with this disease and experienced similar and offer me some reassurance?
I'm just hoping that it's because it's the winter months tbh and everyone gets abit more tired and lethargic lol.
If her condition is deteriorating, it will depend on what type of dementia. "
Vascular something I think |
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By (user no longer on site)
over a year ago
|
"My nan has been suffering with this for about 3 to 4 years now.
She can still hold conversations and walk aided with her walker.
Recently she has been having up and down days, really tired, not eating properly feeling sick and just no energy, then other days she's very chatty and just happy in herself.
I'm really worrying about her recently when I see her on her down days and makes me always think the worst is coming soon.
Has anybody had experience with this disease and experienced similar and offer me some reassurance?
I'm just hoping that it's because it's the winter months tbh and everyone gets abit more tired and lethargic lol.
If her condition is deteriorating, it will depend on what type of dementia.
Vascular something I think "
My nan also has vascular, she is similar to your nan in has good days and is happy in herself. However it’s when she has bad depression I find hard. She will sob and cry where I myself am crying. She’s in a EMI I hate leaving her. |
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By (user no longer on site) OP
over a year ago
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"My nan has been suffering with this for about 3 to 4 years now.
She can still hold conversations and walk aided with her walker.
Recently she has been having up and down days, really tired, not eating properly feeling sick and just no energy, then other days she's very chatty and just happy in herself.
I'm really worrying about her recently when I see her on her down days and makes me always think the worst is coming soon.
Has anybody had experience with this disease and experienced similar and offer me some reassurance?
I'm just hoping that it's because it's the winter months tbh and everyone gets abit more tired and lethargic lol.
If her condition is deteriorating, it will depend on what type of dementia.
Vascular something I think
My nan also has vascular, she is similar to your nan in has good days and is happy in herself. However it’s when she has bad depression I find hard. She will sob and cry where I myself am crying. She’s in a EMI I hate leaving her. "
I'm sorry to hear about your nan  , I hate leaving mine too feel so helpless |
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By (user no longer on site)
over a year ago
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"My nan has been suffering with this for about 3 to 4 years now.
She can still hold conversations and walk aided with her walker.
Recently she has been having up and down days, really tired, not eating properly feeling sick and just no energy, then other days she's very chatty and just happy in herself.
I'm really worrying about her recently when I see her on her down days and makes me always think the worst is coming soon.
Has anybody had experience with this disease and experienced similar and offer me some reassurance?
I'm just hoping that it's because it's the winter months tbh and everyone gets abit more tired and lethargic lol.
If her condition is deteriorating, it will depend on what type of dementia.
Vascular something I think "
Vascular dementia. Has she had a stroke or mini strokes?
It actually could be this aspect that is more of a concern, wherein the dementia is a side effect caused by her health.
Do read up about it on the NHS website.
Most importantly enjoy your nan's good days and support her on her bad days xx |
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By (user no longer on site) OP
over a year ago
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"My nan has been suffering with this for about 3 to 4 years now.
She can still hold conversations and walk aided with her walker.
Recently she has been having up and down days, really tired, not eating properly feeling sick and just no energy, then other days she's very chatty and just happy in herself.
I'm really worrying about her recently when I see her on her down days and makes me always think the worst is coming soon.
Has anybody had experience with this disease and experienced similar and offer me some reassurance?
I'm just hoping that it's because it's the winter months tbh and everyone gets abit more tired and lethargic lol.
If her condition is deteriorating, it will depend on what type of dementia.
Vascular something I think
Vascular dementia. Has she had a stroke or mini strokes?
It actually could be this aspect that is more of a concern, wherein the dementia is a side effect caused by her health.
Do read up about it on the NHS website.
Most importantly enjoy your nan's good days and support her on her bad days xx"
The doctor's think she has been having mini strokes I haven't experienced her having any sort of stroke thank god.
Yeah I have read up bits but it scares me to be completely honest.
Yes I do try thank you for the advice xx |
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By (user no longer on site)
over a year ago
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My mother had dementia and sadly died two years ago. She also had vascular dementia, mixed with Alzheimer’s.
It can be normal for people with vascular to “fluctuate” ie have better and worse spells. However something simple like being constipated or having a urinary infection can also makes things worse so if you feel she has worsened recently, especially if it was sudden, I would ask her GP to check her over.
It is an absolutely heartbreaking disease, I am so sorry you are all going through this. Sending love  |
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By (user no longer on site) OP
over a year ago
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"My mother had dementia and sadly died two years ago. She also had vascular dementia, mixed with Alzheimer’s.
It can be normal for people with vascular to “fluctuate” ie have better and worse spells. However something simple like being constipated or having a urinary infection can also makes things worse so if you feel she has worsened recently, especially if it was sudden, I would ask her GP to check her over.
It is an absolutely heartbreaking disease, I am so sorry you are all going through this. Sending love "
I'm so sorry to hear that absolutely heartbreaking , she's currently in a care home so has 24 hour care really, just when I see her on her bad days can't help but think the worst isn't far away and don't know how I am going to cope.
I'm so sorry your family have gone through it and no doubt still are and just want to let you know you seem an amazing person from the forums and bet your mum is incredibly proud of you |
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I work with dementia and sadly there is no cure. It is heartbreaking to watch people decline but thankfully they are unaware and do not suffer. Just enjoy the good days and reflect on the happy times you have shared in the past. Sending you a big hug.xx |
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By (user no longer on site) OP
over a year ago
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"I work with dementia and sadly there is no cure. It is heartbreaking to watch people decline but thankfully they are unaware and do not suffer. Just enjoy the good days and reflect on the happy times you have shared in the past. Sending you a big hug.xx"
Thank you xx |
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By *manaWoman
over a year ago
Basingstoke |
Dementia and end of life are my specialties and I've been doing it for many years.
The best advice I can give is look after yourself. It's very easy for family m_mbers to give their all to their family who are going through this but they need you well and healthy to do this.
Make the most of whatever time they have, if they sleep for 20 hours then make the 4 others memorable for you.
Be gentle with them and yourself, it can get ever so frustrating for you all but that's ok to feel that way. Xxxx |
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"My nan has been suffering with this for about 3 to 4 years now.
She can still hold conversations and walk aided with her walker.
Recently she has been having up and down days, really tired, not eating properly feeling sick and just no energy, then other days she's very chatty and just happy in herself.
I'm really worrying about her recently when I see her on her down days and makes me always think the worst is coming soon.
Has anybody had experience with this disease and experienced similar and offer me some reassurance?
I'm just hoping that it's because it's the winter months tbh and everyone gets abit more tired and lethargic lol."
OP yes I cared for my mum through it. PM me if you wish with questions but dementia is different with each person who suffers but I can give you the low down on the illness. I could write a book on it! |
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By (user no longer on site) OP
over a year ago
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"Dementia and end of life are my specialties and I've been doing it for many years.
The best advice I can give is look after yourself. It's very easy for family m_mbers to give their all to their family who are going through this but they need you well and healthy to do this.
Make the most of whatever time they have, if they sleep for 20 hours then make the 4 others memorable for you.
Be gentle with them and yourself, it can get ever so frustrating for you all but that's ok to feel that way. Xxxx"
I'm trying to keep as positive as I can with her and trying to enjoy when she is awake and aware of what's happening.
Thank you xxxx |
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By *icketysplitsWoman
over a year ago
Way over Yonder, that's where I'm bound |
OP, I'm sorry you're going through this.
My mother had Alzheimer's and Frontotemporal Dementia. It's a very hard to disease to witness, especially as you feel so helpless.
I didn't find it helpful to think about the end coming, mainly because it was such a long time coming. Just take each day as it comes, which is all we can do.
Make sure she is comfortable. People with dementia often don't have the language or communication to tell us when they are in pain and it comes across as agitated behaviour. Make sure the care home gets a dentist in, along with everything else.
|
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By (user no longer on site) OP
over a year ago
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"My nan has been suffering with this for about 3 to 4 years now.
She can still hold conversations and walk aided with her walker.
Recently she has been having up and down days, really tired, not eating properly feeling sick and just no energy, then other days she's very chatty and just happy in herself.
I'm really worrying about her recently when I see her on her down days and makes me always think the worst is coming soon.
Has anybody had experience with this disease and experienced similar and offer me some reassurance?
I'm just hoping that it's because it's the winter months tbh and everyone gets abit more tired and lethargic lol.
OP yes I cared for my mum through it. PM me if you wish with questions but dementia is different with each person who suffers but I can give you the low down on the illness. I could write a book on it! "
Thank you x |
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"I work with dementia and sadly there is no cure. It is heartbreaking to watch people decline but thankfully they are unaware and do not suffer. Just enjoy the good days and reflect on the happy times you have shared in the past. Sending you a big hug.xx"
I disagree that they are unaware! I know this from caring for my mum who suffered from it. Her eyes said she knew but she could not communicate. No one knows what it’s like inside for them as no one has survived it. Rem_mber I’ve been through it! |
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By (user no longer on site) OP
over a year ago
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"OP, I'm sorry you're going through this.
My mother had Alzheimer's and Frontotemporal Dementia. It's a very hard to disease to witness, especially as you feel so helpless.
I didn't find it helpful to think about the end coming, mainly because it was such a long time coming. Just take each day as it comes, which is all we can do.
Make sure she is comfortable. People with dementia often don't have the language or communication to tell us when they are in pain and it comes across as agitated behaviour. Make sure the care home gets a dentist in, along with everything else.
"
I think this is my problem im worrying to much about when she's going to pass instead of enjoying what time I have left with her
Thank you
Xx |
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By *amissCouple
over a year ago
chelmsford |
"OP, I'm sorry you're going through this.
My mother had Alzheimer's and Frontotemporal Dementia. It's a very hard to disease to witness, especially as you feel so helpless.
I didn't find it helpful to think about the end coming, mainly because it was such a long time coming. Just take each day as it comes, which is all we can do.
Make sure she is comfortable. People with dementia often don't have the language or communication to tell us when they are in pain and it comes across as agitated behaviour. Make sure the care home gets a dentist in, along with everything else.
I think this is my problem im worrying to much about when she's going to pass instead of enjoying what time I have left with her
Thank you
Xx"
,
Aah it's hard losing a loved one. Just give her your time and a nice kiss and cuddle. Spend some quality time with her.x |
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By (user no longer on site) OP
over a year ago
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"OP, I'm sorry you're going through this.
My mother had Alzheimer's and Frontotemporal Dementia. It's a very hard to disease to witness, especially as you feel so helpless.
I didn't find it helpful to think about the end coming, mainly because it was such a long time coming. Just take each day as it comes, which is all we can do.
Make sure she is comfortable. People with dementia often don't have the language or communication to tell us when they are in pain and it comes across as agitated behaviour. Make sure the care home gets a dentist in, along with everything else.
I think this is my problem im worrying to much about when she's going to pass instead of enjoying what time I have left with her
Thank you
Xx,
Aah it's hard losing a loved one. Just give her your time and a nice kiss and cuddle. Spend some quality time with her.x"
X |
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By (user no longer on site)
over a year ago
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You have the right to have the patient assessed for NHS continual funding. She is a patient. Not a client as some local authorities like to suggest. If health needs mean the patient cannot look after themselves then they can get the care they require.
I cannot offer much hope. The illness gets worse. Think of yourself too.
Keep the pressure on the appropriate authorities to give the patient the care needed.
Do what you can. But if the patient had a brain tumor you wouldn't be the nurse would you?
They have a disease that cannot be cured. |
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By (user no longer on site)
over a year ago
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I'm sorry your nan is going through this and it must be very difficult to watch. You're probably more of a comfort to her than you realise. She's lucky that she's got a grandson who cares for her as much as you clearly do. |
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By (user no longer on site) OP
over a year ago
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"Have you done the dementia friend training OP?
It's free and is really helpful.
My grandma had it too, it's really difficult for everyone.
Xxx"
No I will have to look at that thank you, yeah it's so hard xxx |
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By (user no longer on site)
over a year ago
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My mates dad went from a perfectly normal working man to a man who didn’t recognise his own wife and kids in the space of a year. He’s in a home now and needs round the clock care, awful disease it is, heartbreaking to see. The only saving grace is that they have no idea what’s going on which is some kind of blessing I suppose. |
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By (user no longer on site)
over a year ago
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My grandad died last year after a 6 or 7 year gradual deterioration from Vascular Dementia.
It's hard on everyone - as much for the family as for the sufferer. I found taking him out for a drive to see places he used to live and the pub he used to go to when he was working brought the lights on and got him back in the room with us - temporarily, at least.
As others have said, spend the time, make the most of the good days and don't take it personally when she doesn't recognise you.
All the best. |
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By (user no longer on site) OP
over a year ago
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"How old is your Nan op?
76
I think dementia is one of the worst things to watch a loved one suffer however old they are. I'm sorry that you and your family are experiencing it.
"
thank you xx |
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"How old is your Nan op?
76
I think dementia is one of the worst things to watch a loved one suffer however old they are. I'm sorry that you and your family are experiencing it.
thank you xx"
As you might expect my parents are very old. My mum is in poor health has had several strokes and had a serious head injury last year. It's very hard isn't it but in some ways it gives an opportunity to make the most of your time with them. |
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By (user no longer on site) OP
over a year ago
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"How old is your Nan op?
76
I think dementia is one of the worst things to watch a loved one suffer however old they are. I'm sorry that you and your family are experiencing it.
thank you xx
As you might expect my parents are very old. My mum is in poor health has had several strokes and had a serious head injury last year. It's very hard isn't it but in some ways it gives an opportunity to make the most of your time with them."
Yes need to just keep thinking positive and sorry to hear about your mum xx |
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"How old is your Nan op?
76
I think dementia is one of the worst things to watch a loved one suffer however old they are. I'm sorry that you and your family are experiencing it.
thank you xx
As you might expect my parents are very old. My mum is in poor health has had several strokes and had a serious head injury last year. It's very hard isn't it but in some ways it gives an opportunity to make the most of your time with them.
Yes need to just keep thinking positive and sorry to hear about your mum xx"
Thanks.
To an extent it's more to be expected at my age and because I'm involved in their care I feel they I'm at least helping. Although it makes me feel very sad sometimes I also feel it's part of the natural order in some ways.
Would you feel better if you could actually do something do you think? |
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By (user no longer on site) OP
over a year ago
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"How old is your Nan op?
76
I think dementia is one of the worst things to watch a loved one suffer however old they are. I'm sorry that you and your family are experiencing it.
thank you xx
As you might expect my parents are very old. My mum is in poor health has had several strokes and had a serious head injury last year. It's very hard isn't it but in some ways it gives an opportunity to make the most of your time with them.
Yes need to just keep thinking positive and sorry to hear about your mum xx
Thanks.
To an extent it's more to be expected at my age and because I'm involved in their care I feel they I'm at least helping. Although it makes me feel very sad sometimes I also feel it's part of the natural order in some ways.
Would you feel better if you could actually do something do you think?"
Yes definitely |
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"My mates dad went from a perfectly normal working man to a man who didn’t recognise his own wife and kids in the space of a year. He’s in a home now and needs round the clock care, awful disease it is, heartbreaking to see. The only saving grace is that they have no idea what’s going on which is some kind of blessing I suppose."
I don’t agree and people would say to me ‘at least your mum doesn’t know what is happening’, this is not nice to say about someone who has lost all method of communication and dignity, it’s condescending! I feel passionate about how dementia patients are treated. |
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