It’s strange... I’ve noticed a change not only obviously in my dad who was diagnosed with vascular dementia 3 years ago but In myself. We try to keep light of the situation and my dad is still in the mind set he can understand what’s wrong with him and what’s happening to him. Sometimes I don’t know how to speak to him about it. I used to be so close to my dad but since his diagnosis I’ve noticed we are not as close as we were. It’s like I suppose if I pretend it’s not happening then it won’t be but truth is... it is happening and I see him getting worse. I literally dread the day I wake up and I go to see him and he has no idea who I am. It’s quite selfish really because he is the one going through this and losing who he is and yet I’m more worried about him not knowing how I am. I feel so guilty most of the time for thinking about it. I’ve also not really googled or read too much about it because I won’t want to read what could happen to my Dad. My Dad the past few months has been having falls a lot. He’s got a pendant alarm just in case I’m at work and mum is out that he can call for help. Luckily yet he’s never had to use it. He’s also started taking the wrong tablets, even when my mum put them in a box for each time of day so he’s got a automated pill dispenser now which dispenses only what he needs at a certain time. I work for a company that supplies medical equipment (beds, mattress, hoists, toileting equipment and stuff like that) and I speak to people who loan this equipment through the local council and a lot of the people have dementia and they end up needing a hospital bed at home and all sorts. That also scares me. I guess I’m just scared of losing him befor his time. He’ll be alive for a while but it in the end it won’t be him fully. Sorry to go on...
How to react?
- Thread starter Victoria16
- Start date
Hello and welcome to the forum @Victoria16.
Your feelings are natural. There is even a type of grief known as 'anticipatory grief' that many suffer after diagnosis - it's a grief for the loss of the person even when they are still alive. It is possible for that to ease.
As to your dad not knowing you, it's true that this may happen. However, often the person is still aware that there is a close bond. An example of this is that my wife, who was diagnosed 4-5 years ago, has, at times, asked me if I was her mother or her father before getting to husband. The common factor there is that my wife seemed to be aware of the close relationship but couldn't stick a label on it. Just a week or so back I was even asked which Pete was I - her description of the 'other' Pete in the apartment fitted with how I looked when we first met! All very strange but when I look beyond the questions I can accept that there is knowledge of a loving relationship.
I don't know if you have had time for a search around the forum site yet so if you have yet to fine it the full list of the very informative Factsheets can be found with this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
If communicating becomes an issue, a few handy tips can be picked from the useful thread that can be reached with this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
I wish you and your dad all the best.
Your feelings are natural. There is even a type of grief known as 'anticipatory grief' that many suffer after diagnosis - it's a grief for the loss of the person even when they are still alive. It is possible for that to ease.
As to your dad not knowing you, it's true that this may happen. However, often the person is still aware that there is a close bond. An example of this is that my wife, who was diagnosed 4-5 years ago, has, at times, asked me if I was her mother or her father before getting to husband. The common factor there is that my wife seemed to be aware of the close relationship but couldn't stick a label on it. Just a week or so back I was even asked which Pete was I - her description of the 'other' Pete in the apartment fitted with how I looked when we first met! All very strange but when I look beyond the questions I can accept that there is knowledge of a loving relationship.
I don't know if you have had time for a search around the forum site yet so if you have yet to fine it the full list of the very informative Factsheets can be found with this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
If communicating becomes an issue, a few handy tips can be picked from the useful thread that can be reached with this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
I wish you and your dad all the best.
Dear Victoria16
Take a few deep breaths then repeat in your mind a few times all my anxieties and fears relating to dad are normal, acceptable and I have no reason to feel bad about myself for having them.
Dementia is a whole different ball game to normal life and the rules of daily living have to gradually change. Anticipatory grief has already been mentioned. I would add anxiety about the future, concern about how you are reacting to events, feelings of guilt that you should be doing better, etc. All appearing in your thread. Okay I know nothing about you in terms of your age, life experience, etc, but there are some key points to start with. Please accept my comments are well meaning, supportive, never judgemental, just suggesting a different way to look at some things.
Firstly knowledge is useful but I suggest in bite size chunks. Your job is useful at one level seeing things which may help your dad in the developing future. At another level it maybe causing you some anxiety getting a full on view of what might be required. Try and stay focused on where your dad is now, what he needs help with this moment in time. It can help to think a little into the future, trying to anticipate the coming months, but at this stage no further. Not every PWD gets all the related problems, if they do the timing, order and degree may all vary. Please do not get involved with imagining what the future will hold. Look how Coronavirus came out of nowhere. Be mindful about the future but remain open minded, try not to anticipate an unknowable future to much. Things will develop, try and be flexible in actions and how you react to them. Never easy, we all get things wrong at times, in that way we gather experience. I guess it is the human condition.
Secondly that is the external world that you, your dad and your mum will share overtime. As I say largely unknowable. Now consider your own internal world. From what you say pretty shook up at present. That is not said judgementally, words appear like selfish and guilt, very powerful and negative ones. Hard to accept perhaps but these are all normal emotional reactions, they are not pleasant, long term they are not healthy for you. It is not selfish to want your dad as he was, to pretend things are not happening, but I gently suggest to you that hope cannot in reality happen, holding onto it will cause you hurt. Is there anyone you can talk to? Your mum might have similar concerns but perhaps you feel unable to talk about it with her. The old guilt monster means you feel you should not be bothering her with such concerns. You could contact the Alzheimer’s Society help line. I suggest chatting about your feelings might help you come to better terms with them, but only you will know what will work for you. One emotion to turn down is guilt. All carers get it from time to time. We should be better able to cope, the PWD has the condition they need support not you, I should be all knowing in what is required, I should be stronger emotionally, etc. The answer to all those self imposed statements is why, who says so, except the little voice in our heads. Dementia impacts not only the person with it but everyone around them. Strong emotions are pulled to the surface, uncertainty enters our life, we have to slowly adapt, grow our experience, etc.
You are new to this forum. That is a very good start. No better place to come than a home (and strange as it may seem this forum can be a home) where all the members are facing similar problems. Best to talk to people who have some experience and own the tee shirt. If need be have a rant. Got a certain problem then ask and within hours usually someone will come along and answer positively. Several years ago I joined feeling some of what you do, mostly loneliness and a sense of letting my mum down. I should have been doing better. Truth is I still get bad moments, sometimes days, but you know what so do all carers, anyone whose life has been touched by Dementia. Cut Yourself some slack, stop judging yourself harshly, accept you are not alone. Not easy to do but easier when you tell the “guilt monster” to ship out, move on, your not welcome anymore as the song goes.
Hope I have done some good. Started a different type of internal conversation in your mind more positive than the one you are currently having. Please use this forum now you have found it.
Finally one last point. Your post was very honest and you mention dreading the day your dad might not recognise you. Equally KaroakePete tried to answer it by very openly discussing it in the context of his relationship with his wife. Please understand what he was saying about the deeper relationship being recognised. I would add your deepest fear is unlikely to happen as you dread it will. My first such moment came when mum and me were watching television. Mum asked if she could ask me something. Sure mum what’s on your mind. Who are you was the reply. I explained and mum went back to watching the TV. At times I am briefly confused with my dad and grandad. The moments are temporary, mum laughs about her blonde moments, it does not hurt as much as I thought it would. It does not stop me loving her, caring for her, knowing she needs me, etc. Try not to ruin today worrying about something which will most likely not happen as you anticipate it will and will most likely not impact on you as you deal with it in the moment. You are gathering experience, knowledge and dare I suggest wisdom every day, which will help you in your moments of need in the future.
Please take care. Try to start some internal conversations with yourself where you question your negative thoughts, tell the guilt monster to pipe down, etc.
Take a few deep breaths then repeat in your mind a few times all my anxieties and fears relating to dad are normal, acceptable and I have no reason to feel bad about myself for having them.
Dementia is a whole different ball game to normal life and the rules of daily living have to gradually change. Anticipatory grief has already been mentioned. I would add anxiety about the future, concern about how you are reacting to events, feelings of guilt that you should be doing better, etc. All appearing in your thread. Okay I know nothing about you in terms of your age, life experience, etc, but there are some key points to start with. Please accept my comments are well meaning, supportive, never judgemental, just suggesting a different way to look at some things.
Firstly knowledge is useful but I suggest in bite size chunks. Your job is useful at one level seeing things which may help your dad in the developing future. At another level it maybe causing you some anxiety getting a full on view of what might be required. Try and stay focused on where your dad is now, what he needs help with this moment in time. It can help to think a little into the future, trying to anticipate the coming months, but at this stage no further. Not every PWD gets all the related problems, if they do the timing, order and degree may all vary. Please do not get involved with imagining what the future will hold. Look how Coronavirus came out of nowhere. Be mindful about the future but remain open minded, try not to anticipate an unknowable future to much. Things will develop, try and be flexible in actions and how you react to them. Never easy, we all get things wrong at times, in that way we gather experience. I guess it is the human condition.
Secondly that is the external world that you, your dad and your mum will share overtime. As I say largely unknowable. Now consider your own internal world. From what you say pretty shook up at present. That is not said judgementally, words appear like selfish and guilt, very powerful and negative ones. Hard to accept perhaps but these are all normal emotional reactions, they are not pleasant, long term they are not healthy for you. It is not selfish to want your dad as he was, to pretend things are not happening, but I gently suggest to you that hope cannot in reality happen, holding onto it will cause you hurt. Is there anyone you can talk to? Your mum might have similar concerns but perhaps you feel unable to talk about it with her. The old guilt monster means you feel you should not be bothering her with such concerns. You could contact the Alzheimer’s Society help line. I suggest chatting about your feelings might help you come to better terms with them, but only you will know what will work for you. One emotion to turn down is guilt. All carers get it from time to time. We should be better able to cope, the PWD has the condition they need support not you, I should be all knowing in what is required, I should be stronger emotionally, etc. The answer to all those self imposed statements is why, who says so, except the little voice in our heads. Dementia impacts not only the person with it but everyone around them. Strong emotions are pulled to the surface, uncertainty enters our life, we have to slowly adapt, grow our experience, etc.
You are new to this forum. That is a very good start. No better place to come than a home (and strange as it may seem this forum can be a home) where all the members are facing similar problems. Best to talk to people who have some experience and own the tee shirt. If need be have a rant. Got a certain problem then ask and within hours usually someone will come along and answer positively. Several years ago I joined feeling some of what you do, mostly loneliness and a sense of letting my mum down. I should have been doing better. Truth is I still get bad moments, sometimes days, but you know what so do all carers, anyone whose life has been touched by Dementia. Cut Yourself some slack, stop judging yourself harshly, accept you are not alone. Not easy to do but easier when you tell the “guilt monster” to ship out, move on, your not welcome anymore as the song goes.
Hope I have done some good. Started a different type of internal conversation in your mind more positive than the one you are currently having. Please use this forum now you have found it.
Finally one last point. Your post was very honest and you mention dreading the day your dad might not recognise you. Equally KaroakePete tried to answer it by very openly discussing it in the context of his relationship with his wife. Please understand what he was saying about the deeper relationship being recognised. I would add your deepest fear is unlikely to happen as you dread it will. My first such moment came when mum and me were watching television. Mum asked if she could ask me something. Sure mum what’s on your mind. Who are you was the reply. I explained and mum went back to watching the TV. At times I am briefly confused with my dad and grandad. The moments are temporary, mum laughs about her blonde moments, it does not hurt as much as I thought it would. It does not stop me loving her, caring for her, knowing she needs me, etc. Try not to ruin today worrying about something which will most likely not happen as you anticipate it will and will most likely not impact on you as you deal with it in the moment. You are gathering experience, knowledge and dare I suggest wisdom every day, which will help you in your moments of need in the future.
Please take care. Try to start some internal conversations with yourself where you question your negative thoughts, tell the guilt monster to pipe down, etc.
Ah Sweetheart it is scary isn't it. I felt exactly the same way. Still have a wobble sometimes.
Please remember that all cases of dementia are different and not everyone will suffer the same symptoms or deteriorate to the same extent.
Take this time to still enjoy your dad, don't worry about the what if's, you can't change the future so don't let dementia steal any enjoyment you can have with your dad.
We have a house full of equipment, bed, air mattress, rotunder, hoist, commode, frame...the list goes on but they are there to help my hubby and make his life (and mine) easier, eventually they just become another piece of furniture.
Keep posting, I doubt there is anything you will think of or come across that hasn't been faced before by someone on here. There are some very knowledgeable members here who more than willing to help.
(((Hugs)))
Please remember that all cases of dementia are different and not everyone will suffer the same symptoms or deteriorate to the same extent.
Take this time to still enjoy your dad, don't worry about the what if's, you can't change the future so don't let dementia steal any enjoyment you can have with your dad.
We have a house full of equipment, bed, air mattress, rotunder, hoist, commode, frame...the list goes on but they are there to help my hubby and make his life (and mine) easier, eventually they just become another piece of furniture.
Keep posting, I doubt there is anything you will think of or come across that hasn't been faced before by someone on here. There are some very knowledgeable members here who more than willing to help.
(((Hugs)))
Hi @Victoria16, welcome to the forum. I totally understand where you are coming from. I think everything you said is a perfectly natural reaction. I was the same as you I didn't want to read about it, I was frightened that I would see the story that lay ahead. I was worried about the time of not being recognised (both my parents had dementia). What I have learned with the benefit of hindsight that being informed is absolutely the best thing, as is understanding that although there are many similarities that we can learn from each person is different and so is the rate of progression.
I agree strongly with @RosettaT. and the one piece of advice I would have valued most in your situation is to really enjoy being with your Dad now, worrying about what will or won't happen in the future is probably the thing that sits between you ,now. I wish you all the best, keep posting.
I agree strongly with @RosettaT. and the one piece of advice I would have valued most in your situation is to really enjoy being with your Dad now, worrying about what will or won't happen in the future is probably the thing that sits between you ,now. I wish you all the best, keep posting.
Hi Victoria. My situation is different as it is my husband who has early onset dementia. Your description of your fears for the future really struck a chord with me, however. I sometimes put my head in the sand (actually - quite a lot) but it's always there really. I've tried anti depressants , meditation, this forum - but ultimately it's nigh on impossible not to think about the future sometimes. A day at a time is good advice but then it just ends up like Groundhog Day! It can be difficult to read about other people's experience of dementia or being cared for. I completely freaked out when I first joined the forum a few weeks ago.
I'm not really getting to any point here. Just wanted to say I hear you and sympathise. It is scary and that is a really normal reaction.
This is beautiful it's the words I feel I also need to hear to, I have researched a bit to much, my mum is not diagnosed but in my heart I no. All the signs are leading their.
You say you have researched too much. This is common behaviour and normal. We play this trick with ourselves, we think that if we do thorough research on a topic then we will be 100% armed and prepared for each and every eventuality when it comes. In this way our shock and grief will be lessened because we are prepared.
I have come to say that these are false thoughts. Think of somebody or something that you loved and lost. How do you been told all the details of the circumstances that would lead up to that loss would that have saved you from even one tear or sad feeling? It really wouldn’t. Yet we and I mean we Lol. Keep doing this.
My dad had memory problems and a cancer diagnosis and I ran every possible eventual scenario in my head.
In reality dad had a fall, broke his hip and died quite quickly in a general surgical hospital ward.
All those weeks debating palliative care at home versus going into a hospice or home and to what end?
No amount of googling sadly it’s going to help us.
I am disciplining myself into here and now thinking. Today mum is safe today mum is loved today has been a good day.
Who knows about tomorrow anyway xx
Sending love
I have come to say that these are false thoughts. Think of somebody or something that you loved and lost. How do you been told all the details of the circumstances that would lead up to that loss would that have saved you from even one tear or sad feeling? It really wouldn’t. Yet we and I mean we Lol. Keep doing this.
My dad had memory problems and a cancer diagnosis and I ran every possible eventual scenario in my head.
In reality dad had a fall, broke his hip and died quite quickly in a general surgical hospital ward.
All those weeks debating palliative care at home versus going into a hospice or home and to what end?
No amount of googling sadly it’s going to help us.
I am disciplining myself into here and now thinking. Today mum is safe today mum is loved today has been a good day.
Who knows about tomorrow anyway xx
Sending love
By the way I expect you old hands know all this already but mum has recently started having hallucinations after waking up.
Found out it’s a thing
Hypnagogic and hypnopompic hallucinations are both sleep-related hallucinations. Hypnogogic hallucinations happen as you're falling asleep and hypnopompic hallucinations happen as you're waking up. Both types aren't usually a cause for concern.
Also PINCH ME causes of delirium
Pain
Infection
Nutrition
Constipation
Hydration
Medicines
Environment
Useful to know !
Found out it’s a thing
Hypnagogic and hypnopompic hallucinations are both sleep-related hallucinations. Hypnogogic hallucinations happen as you're falling asleep and hypnopompic hallucinations happen as you're waking up. Both types aren't usually a cause for concern.
Also PINCH ME causes of delirium
Pain
Infection
Nutrition
Constipation
Hydration
Medicines
Environment
Useful to know !
