I am with my mum now and feel terrible as i have been spending my time at home all day in bed as i can't face coming to see her during the day. I come in the evening when she has been hoisted to bed and no one can see me not coping. My brother who hsd learning disability died last year and i have suddenly realised he was keeping me going. He was such a lovely positive man who loved to see his mum even when she clearly didn't know him any more. He had LD and autism yet he was the positive one keeping me afloat. I thought i was supporting him through his long and painful illness but it was the other way around. I had to pull mum up in the bed when i arrived today as she had slipped down. She has deteriorated so much and so rapidly since her 5 weeks in hospital. I knew she wasn't eating too well in her new nursing home (which seems to be very good) but didn't appreciate how much weight she has lost. She has gone from a size 18/20 to probably a 14 in a matter of 2-3 months. it's been 8 years since her diagnosis and since her massive deterioration instead of being there for her I have been running away from the situation by only visiting when she is asleep in the evening (although she sleeps a lot in the day as well). Her clothes must be falling off her. She calls ny name but doesn't know me. I know i have let her down as i am letting go but i cant deal with this. My other brother lives abroad and cannot help. I wonder why the Home didn't mention the huge loss of weight. Perhaps this is how it goes. I didn't push for her to wear her dentures and that can't help with the eating. It was difficult in hospital but she was eating quite well then. I feel i should raise my concerns but don't know what to ask them to do. I was in control and always had a suggestion to help as i knew her so well. I don't know what to suggest anymore. I am out of my depth now. I don't know how I got here or how this has happened. It must have been creeping up on both of us and i didn't see it coming. I need to sell her house soon for funds but can't face that either. Is this how it goes in the later stages of dementia? I am fearful of the next stage if that is the case. How bad can it get? Sorry for going on.
Frightened
- Thread starter ChristinaG
- Start date
I suppose how bad it can get is the same for us all in that we will die one day of dementia or something else. You have a few practical things to deal with and I would concentrate on those as you can't deal directly with your Mum at the moment. Her fees will have to be paid so get the house sorted and on the market unless you are actually living in it.
Watching our loved ones diminish and deteriorate is tough but it is how it is with a serious illness and head in the sand won't make it go away. Be the daughter she needs and face up to the tasks that have to be done and who knows you might then be able to talk to her in the daytime with a clear conscience.
Watching our loved ones diminish and deteriorate is tough but it is how it is with a serious illness and head in the sand won't make it go away. Be the daughter she needs and face up to the tasks that have to be done and who knows you might then be able to talk to her in the daytime with a clear conscience.
hello @ChristinaG
what a heart felt post
speaking as someone who chose not to visit my dad today because I have been out in the garden and wanted to stay out, please be easier on yourself
in no way have you let your mum down - look at all that you have arranged for her
and you are understandably grieving for your brother - I doubt he would have explained your relationship as you have , rather that you supported each other, each in your own unique way
maybe call the mananger of the home tomorrow and ask for a time you could pop in just for a chat - be open and say you are finding it tough right now and that you also have some questions you would like to have their thoughts on - you might show them your post, or an edited version - the manager is there to see to the welfare of the residents and to support their family members, so will be used to talking through whatever is bothering the family
there's no rule book about visiting - go when is best for you, and take some time out when you need it
best wishes
what a heart felt post
speaking as someone who chose not to visit my dad today because I have been out in the garden and wanted to stay out, please be easier on yourself
in no way have you let your mum down - look at all that you have arranged for her
and you are understandably grieving for your brother - I doubt he would have explained your relationship as you have , rather that you supported each other, each in your own unique way
maybe call the mananger of the home tomorrow and ask for a time you could pop in just for a chat - be open and say you are finding it tough right now and that you also have some questions you would like to have their thoughts on - you might show them your post, or an edited version - the manager is there to see to the welfare of the residents and to support their family members, so will be used to talking through whatever is bothering the family
there's no rule book about visiting - go when is best for you, and take some time out when you need it
best wishes
Just to say thank you for the post offering empathy and advice. - it is lucky for me that I found a kind and understanding person. As for the post telling me to get on with things and not bury my head in the sand and perhaps i might visit my mum without guilt, I say that if it was as easy as that I wouldn't have been posting on talking point. I do think that people should be very careful about how they respond and not to judge as they could push people over the edge. I am in a very bad place right now and realise thank goodness that after 8 years fighting the disease with my mum it is taking over both of us and I am sinking into depression. I know others are in the same boat and this is the way with serious illnesses but that kind of ,"pull yourself together" comment doesn't help. I do know that if I give into this now my mum will suffer as more than ever needs me to be strong. It should be okay to admit you can't cope anymore and need help.
@ChristinaG would it help you to speak to your GP?
You sound very down (maybe depressed?) and no wonder, you are deep in grief for your brother and now struggling to care for your Mum and yourself.
I was once offered ''emotional help' by the Admiral Nurses (the helpline), could you face calling them? They were wonderful to me.
Usually they are very busy but they DO call back quickly if you leave a message.
https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/
Please don't try to carry on as you are without talking to someone who is there to help.
I'm so sorry you feel so bad xxx
You sound very down (maybe depressed?) and no wonder, you are deep in grief for your brother and now struggling to care for your Mum and yourself.
I was once offered ''emotional help' by the Admiral Nurses (the helpline), could you face calling them? They were wonderful to me.
Usually they are very busy but they DO call back quickly if you leave a message.
https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/
Please don't try to carry on as you are without talking to someone who is there to help.
I'm so sorry you feel so bad xxx
Christina if that's how it came across then I am sorry. I would never judge anyone in this situation having had my own share of problems. My feelings on reading your post were that you knew you had to do certain things which would not go away but couldn't get yourself to do them.
And that is the crux of the problem. No matter how down we are or how distressed, life has to go on and the business of life has to be done. Somehow we have to deal with it. You will in fact pull yourself together at some point whether I advise it or not.
Ignore my post if it jars with you and take other's advice. I really hope all goes well for you and I accept unreservedly your criticism of my words.
Hi @ChristinaG. I'm so sorry to read of your situation. The loss of your brother must have been a hard blow for you and as others have said you are still grieving for him. I'm glad you had the strength to share your feelings here and hope you keep posting.
If you think it would help then why not give the Helpline a ring? It might be good to chat with someone there as well. The details are as follows -
https://www.alzheimers.org.uk/get-support/national-dementia-helpline
The number is
0300 222 11 22
If you think it would help then why not give the Helpline a ring? It might be good to chat with someone there as well. The details are as follows -
https://www.alzheimers.org.uk/get-support/national-dementia-helpline
The number is
0300 222 11 22
@ChristinaG I won't say I know how you feel but I think I can understand your feelings and I wish I could do something to help. When my late mum was in the last stages of Alzheimer's I watched her slipping away from me. She lost an enormous amount of weight, dropping from a size 12 to about a 6 or 8 and I often, nearly always, felt as though I wanted to run away and not face what was happening.
What kept me going was my aunt, my mum's twin, who was like a second mum to me. We supported each other and I'm not sure either of us would have found the strength to carry on without the other...I'd like to think we would...
You say your brother was your strength, your positivity, and I'm so sorry for your loss. You have to come to terms with your grief for the loss of your brother and somehow find the strength to carry on, or the strength to admit you can't.
I do agree that you sound depressed and I think a visit to the GP could help you. My daughter has recently been given anti-depressants as she is struggling to cope with her emotions around her grandad. I didn't want her to take them, but I was wrong, they have helped no end. It's not a forever treatment just for 6-12 months to get her mood hormones or whatever they are called back where they should be.
I wonder if you took a week to allow your self time out from visiting would help so you can try to sort yourself out would help? I know it will take a lot longer than that but maybe allowing yourself some "me time" could help with this crisis.
What kept me going was my aunt, my mum's twin, who was like a second mum to me. We supported each other and I'm not sure either of us would have found the strength to carry on without the other...I'd like to think we would...
You say your brother was your strength, your positivity, and I'm so sorry for your loss. You have to come to terms with your grief for the loss of your brother and somehow find the strength to carry on, or the strength to admit you can't.
I do agree that you sound depressed and I think a visit to the GP could help you. My daughter has recently been given anti-depressants as she is struggling to cope with her emotions around her grandad. I didn't want her to take them, but I was wrong, they have helped no end. It's not a forever treatment just for 6-12 months to get her mood hormones or whatever they are called back where they should be.
I wonder if you took a week to allow your self time out from visiting would help so you can try to sort yourself out would help? I know it will take a lot longer than that but maybe allowing yourself some "me time" could help with this crisis.
First and foremost - no, you most definitely have not let your mum down. Eight years is a long haul when caring for a loved one with dementia - and it definitely doesn't get easier as time goes by.
On top of that you are grieving for the loss of your beloved brother who has played such a part in keeping you positive. No wonder you are struggling and frightened right now.
For many of us, no matter how well we have been coping, a sudden change in health or circumstances (or both) can come along and make us realise that we have come as far as we can on our own, and that it is time to make arrangements that are in our loved one's best interests.
You have made that step magnificently well. Your mother is in a good nursing home and I am sure that, in time, you will find it easier to visit her. It is just all very new and strange right now and needs time for adjustment.
I am going through something similar with my husband. His mental and physical health went downhill quite fast early in January and he has been in an NHS dementia unit since February. We are currently going through the process of sorting out a nursing home.
It hurts, I know it hurts, and it can be scary. I completely understand the staying in bed reference - I did it myself a few weeks ago. I knew it would achieve nothing, the situation would not change and all the practical stuff would still be there when I emerged from under the duvet - but everything was closing in on me, and for that day or two I needed to shut everything out for my own health as it was all becoming quite overwhelming.
While I was under the duvet, unbothered by external interruptions, I found the time and space to acknowledge that things were beyond my control and that I would either have to go with the flow as best I could or become ill. I found a new resolve to face the quickly changing situation and I emerged to fight another day.
When you have cared so long and carefully for someone like we have it is hard to let go of the reins. It is hard to realise that once where we knew everything there was to know and understand about that person - suddenly there are things that others know that we do not.
The shock of not knowing something hit me a couple of weeks ago when my husband had to have an emergency operation. I felt useless not being able to tell them basic stuff like when he had last eaten or drunk something, when he'd last had a bowel motion, whether he had loose stools etc. I knew his medications but not the current doses (they keep getting tweaked) - nor did I know at what times of day they are administered. This was all information that I could previously have reeled off without a second thought.
However, despite these gaps, my role and knowledge in my husband's care is not diminished, just slightly changed. I have known him 40 years and will have been married to him 36 years come December, so there is so much I know about him which will be vital in making sure his needs and preferences are met going forward.
I also understand your concerns about weight loss. My husband, who had a very healthy appetite, has been losing weight since January because he eats less and less, as do several other patients in his unit. It seems to be part and parcel of the progression of the disease in the later stages. There have always been general requests for me to help encourage him to eat and drink when I visit, as is the case with other patients being visited by their family.
However, it was only a couple of weeks ago that I was directly approached with more urgency and updated on a significant weight loss over a nine week period. I assume that I was directly informed at that point because he now scores 2 on the Malnutrition Universal Screening Tool (MUST) and is at high risk of malnutrition. Up until that point I had known there were weight issues but the severity was not flagged up with me until he reached that new level.
Like you, I often find my loved one asleep whenever I visit - I go at different times and it makes little difference. I also know that he often has his eyes closed but is actually awake. Sometimes I just hold his hand, sometimes I chat a little, sometimes I play his favourite music on a portable CD player. I just let him rest and enjoy the moments (the occasional hand squeeze, smile or brief glance) as best I can. In some small way we are still connecting and it is lovely.
I am gradually getting over the guilty feeling that I could have done more. If anything there are definite benefits to no longer being the hands on carer and I am sure you will eventually find the same with your mum. It allows us as carers to have a more peaceful time and quality time with our loved ones. I am actually happier to find myself once more able to think of myself as a wife again rather than a carer. But I am a wife who still has much to offer in making sure my husband's care and well-being is the best it can be. Its just that I no longer have to go it alone.
I hope that you too will find peace and calm as you let go a little bit and that, once all the practical stuff is sorted, you will relax back into the mother and daughter role, knowing that you have, and still are, making sure mum's best interests are met.
On top of that you are grieving for the loss of your beloved brother who has played such a part in keeping you positive. No wonder you are struggling and frightened right now.
For many of us, no matter how well we have been coping, a sudden change in health or circumstances (or both) can come along and make us realise that we have come as far as we can on our own, and that it is time to make arrangements that are in our loved one's best interests.
You have made that step magnificently well. Your mother is in a good nursing home and I am sure that, in time, you will find it easier to visit her. It is just all very new and strange right now and needs time for adjustment.
I am going through something similar with my husband. His mental and physical health went downhill quite fast early in January and he has been in an NHS dementia unit since February. We are currently going through the process of sorting out a nursing home.
It hurts, I know it hurts, and it can be scary. I completely understand the staying in bed reference - I did it myself a few weeks ago. I knew it would achieve nothing, the situation would not change and all the practical stuff would still be there when I emerged from under the duvet - but everything was closing in on me, and for that day or two I needed to shut everything out for my own health as it was all becoming quite overwhelming.
While I was under the duvet, unbothered by external interruptions, I found the time and space to acknowledge that things were beyond my control and that I would either have to go with the flow as best I could or become ill. I found a new resolve to face the quickly changing situation and I emerged to fight another day.
When you have cared so long and carefully for someone like we have it is hard to let go of the reins. It is hard to realise that once where we knew everything there was to know and understand about that person - suddenly there are things that others know that we do not.
The shock of not knowing something hit me a couple of weeks ago when my husband had to have an emergency operation. I felt useless not being able to tell them basic stuff like when he had last eaten or drunk something, when he'd last had a bowel motion, whether he had loose stools etc. I knew his medications but not the current doses (they keep getting tweaked) - nor did I know at what times of day they are administered. This was all information that I could previously have reeled off without a second thought.
However, despite these gaps, my role and knowledge in my husband's care is not diminished, just slightly changed. I have known him 40 years and will have been married to him 36 years come December, so there is so much I know about him which will be vital in making sure his needs and preferences are met going forward.
I also understand your concerns about weight loss. My husband, who had a very healthy appetite, has been losing weight since January because he eats less and less, as do several other patients in his unit. It seems to be part and parcel of the progression of the disease in the later stages. There have always been general requests for me to help encourage him to eat and drink when I visit, as is the case with other patients being visited by their family.
However, it was only a couple of weeks ago that I was directly approached with more urgency and updated on a significant weight loss over a nine week period. I assume that I was directly informed at that point because he now scores 2 on the Malnutrition Universal Screening Tool (MUST) and is at high risk of malnutrition. Up until that point I had known there were weight issues but the severity was not flagged up with me until he reached that new level.
Like you, I often find my loved one asleep whenever I visit - I go at different times and it makes little difference. I also know that he often has his eyes closed but is actually awake. Sometimes I just hold his hand, sometimes I chat a little, sometimes I play his favourite music on a portable CD player. I just let him rest and enjoy the moments (the occasional hand squeeze, smile or brief glance) as best I can. In some small way we are still connecting and it is lovely.
I am gradually getting over the guilty feeling that I could have done more. If anything there are definite benefits to no longer being the hands on carer and I am sure you will eventually find the same with your mum. It allows us as carers to have a more peaceful time and quality time with our loved ones. I am actually happier to find myself once more able to think of myself as a wife again rather than a carer. But I am a wife who still has much to offer in making sure my husband's care and well-being is the best it can be. Its just that I no longer have to go it alone.
I hope that you too will find peace and calm as you let go a little bit and that, once all the practical stuff is sorted, you will relax back into the mother and daughter role, knowing that you have, and still are, making sure mum's best interests are met.
I think that you are doing very well to visit at all under the circumstances.
If you feel that you are unable to visit for a while, please dont feel guilty. There was period when I could not visit mum at all as I was having problems with my OH and could not leave him. I used to phone up and talk to the nurses, so that I knew what was going on.
Selling a parents house is horrible, but it has to be done. Can you enlist a friend to give you a hand in sorting it out? I found that having someone else there (in my case a friend of mums) and a bottle of wine made all the difference. Maybe if you gave yourself permission to not visit your mum for a couple of weeks and concentrated on the house instead, you might find it easier.
If you feel that you are unable to visit for a while, please dont feel guilty. There was period when I could not visit mum at all as I was having problems with my OH and could not leave him. I used to phone up and talk to the nurses, so that I knew what was going on.
Selling a parents house is horrible, but it has to be done. Can you enlist a friend to give you a hand in sorting it out? I found that having someone else there (in my case a friend of mums) and a bottle of wine made all the difference. Maybe if you gave yourself permission to not visit your mum for a couple of weeks and concentrated on the house instead, you might find it easier.
Just to complete this thread mum continued to go downhill rapidly and sadly passed away yesterday. It has been 8 years since diagnosis. What was so distressing about the disease is how the deterioration was not gradual but in sudden big steps. I feel for everyone on talking point who suffers in one way or the other from this terrible disease. It is wonderful how people rally round to support each other on TP. Thank you to everyone who responded to my plea for help and i mean everyone. It is the case that I did find that inner strength to carry on and be there for mum. Thank you too to the AS for writing to me direct with the helpline number. Mum's struggle is over and i hope in time that i will be able to remember her as my lovely mum without thinking about the dark clouds of dementia which took her away from me so long ago. X
I was sorry to read that your Mum has passed away, for you of course, but also because it places more things for you to do on your shoulders.
You are absolutely correct - everyone copes ( or doesn't) in different ways. You need help with what you are doing at the moment - go to your GP if you feel that will of use - Citizens Advice can also help.
I think what I am trying to say to you is do not bottle this up within yourself anymore - talk to the people who can help you, as I have suggested.
This awful dementia makes us all into it's victims, and you are also mourning your brother,and now also your dear Mum, you need to be kind to yourself.
Finally, the best advice I can give - and I have had some traumatic times in my life, is:-
Do what needs to be done on a day - and leave everything else to wait it's turn.
Do not try to do too much, look after yourself, and things will sort themselves out eventually.If you have other demands on you - people asking you to do this, do that, admit that you have major problems in your life, and you are sorting through them, but they must be patient with you.
Every morning I say to myself " I CAN do this" even if I think I can't, and over time I have discovered I really CAN do it.
Good Luck and keep posting.
I am so sorry to hear about your mum. Please accept my deepest sympathy to you. I do hope you come to accept that you did all you could and probably much for your mum. There is no easy way through this but please take care of yourself and as others have said, accept help from wherever it comes. I hope you will be comforted by happier memories of your mum and brother.
My thoughts are with you and a virtual hug is coming your way xx
My thoughts are with you and a virtual hug is coming your way xx
Im so sorry for your loss Christina, but Im glad that you managed to be there at the end.
You have done so very well, looking after her for 8 years and I remember well the awfulness of my mums final weeks.
It is done - your mum is at peace now and I hope that you too can find some peace.
You have done so very well, looking after her for 8 years and I remember well the awfulness of my mums final weeks.
It is done - your mum is at peace now and I hope that you too can find some peace.
