I feel my life is stuck while Mum remains in care

[SarahL]

Hello

I haven't been on here in a while. My Mum has been in care for two years now and my reason for posting is that I still feel so bereft (sometimes more than others) but I also feel stuck and unable to properly progress with my life. I just wonder if anyone else out there is in a similar situation feels like this. I feel my life is in limbo.

I was the sole carer on my Mum's terrible journey with Alzheimer's culminating with her going into care two years ago. I continue to visit her 3 to 4 times every week and I am in constant contact with the care home, working to adjust her meds and trying to enable her to achieve of a good quality of life. Her meds have been changed many times in the past four months (including anti psychotic meds. It is the anti-psychotic and anxiety tablets which I think are affecting her badly or it is these combined with the other meds for alzheimer's. Of course every time it's changed it takes a while to get in and out of her system which affects her badly.

Today Mum looked at me deeply and told me I was beautiful and that she loved me which was wonderful. She still knows who I am. She then started up with the paranoia though, that the care home was very bad and we needed to get out of there. The day before she hit me and was screaming out which is a new thing (the screaming). Very sad.

Anyway I just wondered if anyone has this feeling of their life being in limbo and if they have any coping strategies for it.

Thank you

 

[Guzelle]

Hello SarahL

I care for my husband and feel like my life is stuck also. I am 58 and he is 83 he has Alz and Vascular dementia diagnosed in August but has had it longer possibly 5 Years or more. We don't go out with friends anymore people have stopped asking us and he wouldn't cope with the noise in pubs and restaurants. Our house is getting shabby and badly needs decorating and updating but he won't have anyone in to do it he says he Can do it. I'd like a new car but he won't sell the one we have as he likes it. It's 13 years old and going rusty. If I mention anything he get agitated and sometimes quite nasty. I see old friends going on holiday and having nights out it makes me upset thinking that was me not long ago. I feel stuck. I had to buy a new washer as mine was broken he shouted at me he doesn't like anything new or changes. I have broken furniture he won't get rid off if I buy new I am then more cluttered as he won't throw anything away.

 

[lemonjuice]

You are not alone.

Just wanted to reassure you that there is someone else who fee;s like that. We're just out the other side after 6 months of 'emergencies' and my mother is now stable again. I feel exactly like that.

Part of me was hoping we wouldn't still be facing this Christmas together. We went over to celebrate with my mother this evening and she didn't react at all. She had no idea what a present was, that it was Christmas , that her family was visiting etc and wouldn't open her eyes. The only time I got any response was when I fed her the mashed gingerbread biscuit and she just kept opening her mouth like a baby bird. The only pleasure she has left.
Each Christmas I hope something will end this torture and hope that 'next year I'll be able to get on with my life.' We've had 3 Christmases now when I just cry after visiting.

 

[Guzelle]

My husband is still functioning his memory is getting worse he takes memantine which have helped him keep going. We have had weekends away but it is so hard work. If we watch the entertainment he criticises it and spoils it for me so we end up not watching it. He used to enjoy it in the past. We went 3 times this year to Nidd Hall and each time he was worse than the last not sure if we should risk it again.

We have been invited to my daughter's in laws for Christmas dinner but he doesn't want to go says he doesn't like them. My daughter has invited us over on Boxing Day her in laws too I'd like to see them but I can't relax because I know he will be awkward the whole time. He is so ungrateful everybody is trying to keep him happy and all he does is criticise. I know it's the dementia but it gets very hard keeping my temper with him.

 

[velocity]

I feel stuck while Mum remains in care

My Mums not in a CH but I feel the same, but I know these feeling will still be present if Mum was.
Sometimes they seem to engulf me, sometimes I feel very angry but I know they are normal feelings, the grief sometimes is overwhelming as with bereavement I cope with it. But sometimes speaking to somebody like a Counsellor may help.
This disease is truly terrible. xx

 

[BIWO]

I can relate very much to this and my Mum has only been in a CH for three months. Previously she had lived with me for a couple of years until the dementia needed 24/7 support, which as a single working parent was not possible to provide. I have not come to terms with it and I know I need to move my life on. Decided in the New Year to go back to the hobbies and interests which I did in the pre dementia days which in truth have been nearly five years since this disease started and caring responsibilities kicked in.

 

[Shedrech]

hi SarahL
I visit dad 3/4 times a week too - I decided that I had to reclaim my own life and started slowly - my hobby is family history research so I volunteer one afternoon a week at the local society, and now they know me I also help out at some of the functions they organise - I also signed up to do some charity collections, usually just a couple of hours a few times a year - it gets me out of the house and meeting people
I found that I have been able to gradually do more for myself, it was a case of changing my own mindset and not taking on too much at first, then adding in more - I have made friends to go out for lunch with once in a while, and even went on holiday with one - in fact having a few short breaks away by myself was one of the best things I did this year - I was losing confidence driving so made myself book somewhere I knew well but had to go on the motorway; I was really chuffed that I had a brilliant time - I gave myself a talking to before I went; I was not allowed to feel any guilt or worry about dad as he is well looked after and I know he'd be pleased that I was having a holiday
so give it a go - just do one thing a week for you - it really makes a difference
best wishes

 

[Em and M]

Guzelle you need help!

My husband is still functioning his memory is getting worse he takes memantine which have helped him keep going. We have had weekends away but it is so hard work. If we watch the entertainment he criticises it and spoils it for me so we end up not watching it. He used to enjoy it in the past. We went 3 times this year to Nidd Hall and each time he was worse than the last not sure if we should risk it again.

We have been invited to my daughter's in laws for Christmas dinner but he doesn't want to go says he doesn't like them. My daughter has invited us over on Boxing Day her in laws too I'd like to see them but I can't relax because I know he will be awkward the whole time. He is so ungrateful everybody is trying to keep him happy and all he does is criticise. I know it's the dementia but it gets very hard keeping my temper with him.

Guzelle I'm not sure what services are available to you but where we live (Australia) we have an Aged Care Assessment done - you can ask the GP or organize it yourself. This is a comprehensive assessment for mental health and physical needs and paves the way for appropriate services to be implemented. It does sound like you need outside help to implement the change that you need as your husband is taking out his frustrations on you. Good luck Guzelle

 

[Em and M]

Coping

Hello

I haven't been on here in a while. My Mum has been in care for two years now and my reason for posting is that I still feel so bereft (sometimes more than others) but I also feel stuck and unable to properly progress with my life. I just wonder if anyone else out there is in a similar situation feels like this. I feel my life is in limbo.

I was the sole carer on my Mum's terrible journey with Alzheimer's culminating with her going into care two years ago. I continue to visit her 3 to 4 times every week and I am in constant contact with the care home, working to adjust her meds and trying to enable her to achieve of a good quality of life. Her meds have been changed many times in the past four months (including anti psychotic meds. It is the anti-psychotic and anxiety tablets which I think are affecting her badly or it is these combined with the other meds for alzheimer's. Of course every time it's changed it takes a while to get in and out of her system which affects her badly.

Today Mum looked at me deeply and told me I was beautiful and that she loved me which was wonderful. She still knows who I am. She then started up with the paranoia though, that the care home was very bad and we needed to get out of there. The day before she hit me and was screaming out which is a new thing (the screaming). Very sad.

Anyway I just wondered if anyone has this feeling of their life being in limbo and if they have any coping strategies for it.

Thank you

Hi Sarah, I can't offer any solutions I'm sorry. I do think that what you are experiencing is grief - which can manifest in the symptoms you describe. You are grieving the loss of the mum you knew and the changes in your life. Grief from my understanding is something that you CAN get through - sometimes best managed with professional counselling, Counselors do help guide you through the range of emotions and help you in so many ways. If you are working your employment may offer EAP (employee assistance program) for free as what you describe may impinge on your work. If you dont have access to this there are lots of support groups that you might find useful. Good luck!

 

[Amy in the US]

SarahL, it's nice to see you here on TP. I wish I had great advice for you, but I don't. I do understand the feeling you are talking about, about feeling stuck and/or in limbo.

I will give it a think and see what I can come up with. I do wonder if it's a combination of the stress of being a carer, dealing with this horrible disease, and perhaps some anticipatory grief. Perhaps finding someone to talk to (a support group, a therapist, a pastor/vicar/rabbi/priest, a counselor, your GP) would be helpful; perhaps not. Perhaps there is some small step you can take, to help you feel you're doing something in your own life. I'm not sure; there are no easy answers.

Mostly I just wanted to say there are lots of empathetic ears and understanding people here on TP so don't hesitate to come and talk to us. I also would like to cautiously, and carefully, wish that you have as happy a Christmas as it is possible for you to have this year. If it's not possible, I understand, and hope I've caused no upset, distress, or offence; it is kindly meant. In any case, sending you very best wishes.

 

[SarahL]

Thank you everyone for your comments. I find it so helpful to hear other people's experiences and to know that you can empathise.

I had a bad day with Mum on Christmas day with her telling me to leave for over an hour - so I stayed during the CH lunch and just about managed to get her to open her presents but she kept turning to me and telling me 'I wasn't welcome' and that I was always 'showing off'. I didn't stay for too long after that as I realised me being there was giving her anxiety. Whenever anyone else spoke to her she was nice as nice can be and this has been a pattern with her disease towards me for many years. I thought it had eased off but it hasn't. Obviously I'm not a robot and it does make me feel sad but I can manage it better now.

I think Amy in the US is right that perhaps a support group would be a good place for me to go. I am definitely moving in the right direction with my self and my soul... but I do still feel stuck so maybe chatting to others will help.

Thanks again all and I send my best wishes and thoughts to all of you going through this awful, awful disease.

Peace.

 

[love.dad.but..]

I too have felt in limbo since dad became looked after, this is his 3rd Christmas in the home. Husband also has an illness which has required aggressive treatment for the past 6 months so in both directions feel in limbo and in watch and wait mode. I can offer no solutions as I just plod on and juggle but just to say you are not alone. Good wishes to you all

 

[mot]

Hi Sarah L,

I think perhaps you are right....our lives are on hold/in limbo! It's difficult to "go on" with a normal life when things just aren't normal any more. I feel exactly as you do and have found much information and comfort here on Talking Point.

Here, I can vent. Here, I can read about other's experiences and know that I am not alone. Here, I get virtual hugs and find encouragement with no judgement!

It's a journey that is full of hills and valleys. Trying to find "balance" is tricky sometimes, especially during a holiday!

My mom went into memory care here in the US the end of June. I have been her carer for going on 10 years. Even tho memory care has taken on a lot of my "duties", and I sort of have my life back, it seemingly never ends. It's just a hard part of the life cycle to walk through. I have also found that this is even more so for those of us who are diligent, caring and "good" carers. Some people never visit - go on with their lives, never look back and don't know what is going on. I cannot do that and it sounds like you cannot as well.

At this point, I'm trying to find those moments in time for myself, while taking care of mom's business and making sure she's being taken care of.

I think we just have to accept that we are where we are, realize we are NOT alone, and surround ourselves with people who have empathy and who support us.

May you find some peace and comfort in the words and support of others who you will find here.... you are NEVER alone!!!

Hugs,

Mot

 

[Emac]

stuck

SarahL I am sure you are not alone. Since my Mum was diagnosed 9 years ago it has felt like this disease and her needs have dominated my whole life and everything else has suffered, my health, my career, my other relationships and my sanity- and I was not her primary carer. In Sept 2015 she went into care. It took a while to settle her there but by Sept this year I had relaxed a bit and felt I was coming out of a big black hole and starting to reclaim my own life and some HAPPINESS (remember that feeling folks?)

Then in Oct this year my Dad was diagnosed with advanced bladder cancer.
2017 will be spent helping him through any treatment and outcome.

What I have learned from Mum's illness and hope to apply to my new situation is this. Other people's illnesses, even a beloved parent are their illnesses they are not yours. You are still well and healthy and at your own life stage. You will want to support where you can but you are also entitled to your own life and to put your needs first- unless some emergency is taking place and you are needed. Much as you love them you can't make their lives your life or put EVERYTHING on hold, because how long will on hold be - one year, ten years, maybe the rest of your life? What will your health be like by the end of that? How much love will you be able to give them if your own needs are not being met and you are not taking care of yourself?
So my advice to Sarah, myself and all carers for 2017 is this, take every piece of help that is offered to you. Ask yourself if you are being over-responsible and not handing over the care to others i.e. the care home, the medical professionals and others where you can reasonably confidently do so. Do you need to make so many visits, question every medical decision and what could you do with the free time you would gain, if you didn't to sustain your own life and happiness. It is so easy to lose the boundary between your own life and the PWD in all of this, however I have come to believe that is unhealthy and unhelpful ultimately to all to do this. What this looks like in practice will be different for everyone.
Shedrech gives great advice. It's baby steps. Choose something and make a small change. Then repeat until you find that balance....which will need adjusting and readjusting as circumstances change. Sarah I wish you and all talking point users courage strength and love in 2017. Hope it helps to know you are definitely not alone!

 

[Georgina63]

Hi SarahL,
I echo so much of what others have said.
I do know what you mean. I feel daunted at the prospect of the years ahead after my parents moved into a CH in the summer. Sometimes I just don't want to visit and also have constant conversations with myself about the situation (was it the right thing to do, could I do more etc etc). But, I also have to tell myself they are well cared for and as well as can be, and that I also have to focus on my life - I try to imagine having a conversation with my parents at my age - I'm certain they would be telling me they want me to live my life and not feel guilty. This doesn't mean abandoning them, but I hope there is room to continue the caring, but also to focus on me and my immediate family. It's difficult to make sense of it all sometimes. I read a very helpful book recently called Loving Someone with Dementia (Pauline Boss) which I took a lot from. It deals with the ongoing and ambiguous loss/grief that dementia brings.
Do something for you but don't feel guilty. It may help to talk it through (with a counsellor) too. Wishing all the best. Georgina X

 

[SarahL]

Thank you MOT, it means a lot to hear your response. It is indeed a journey we are on with many twists and turns. I too have found this site so helpful and supportive over the years. I am glad you find it helpful too. It sounds as though you have been a wonderful carer to your Mum and I hope she is getting on ok in the care home. It is good days and bad days here. I empathise greatly with you being a carer and a kind person. Also it is very true what you say that some people choose not to understand all that caring for someone with dementia entails and get on with their lives regardless. It has changed me forever and it still continues where Mum is so ill and agitated, however at least we know our Mums are safe and not vulnerable and can always tell ourselves we did our best. I try to not feel guilty any more about things but I do feel so stuck but I also try and live my life as best I can. I suppose it's good days and bad days for carers too. Thank you again and I wish you all the best.

Hi Sarah L,

I think perhaps you are right....our lives are on hold/in limbo! It's difficult to "go on" with a normal life when things just aren't normal any more. I feel exactly as you do and have found much information and comfort here on Talking Point.

Here, I can vent. Here, I can read about other's experiences and know that I am not alone. Here, I get virtual hugs and find encouragement with no judgement!

It's a journey that is full of hills and valleys. Trying to find "balance" is tricky sometimes, especially during a holiday!

My mom went into memory care here in the US the end of June. I have been her carer for going on 10 years. Even tho memory care has taken on a lot of my "duties", and I sort of have my life back, it seemingly never ends. It's just a hard part of the life cycle to walk through. I have also found that this is even more so for those of us who are diligent, caring and "good" carers. Some people never visit - go on with their lives, never look back and don't know what is going on. I cannot do that and it sounds like you cannot as well.

At this point, I'm trying to find those moments in time for myself, while taking care of mom's business and making sure she's being taken care of.

I think we just have to accept that we are where we are, realize we are NOT alone, and surround ourselves with people who have empathy and who support us.

May you find some peace and comfort in the words and support of others who you will find here.... you are NEVER alone!!!

Hugs,

Mot

 

[SarahL]

Thank you Emac for your very supportive email which made an awful lot of sense. You are so right in saying that we, as carers, cannot put our lives 'on hold'. I will remind myself of that as I move forward throughout this 'journey'. I am sorry to hear your Mum is ill and it took its toll on your relationships and health, I fully empathise with you. I am also very sorry to read about your Dad, I hope he and you will be able to manage as best as possible.

I will definitely try to reclaim my life as best I can. I am really proud that I achieved my degree this year and now have a wonderful job in fostering/adoption. I have also brought up my daughter alone and without any family support system in place so I am very happy to have achieved what I have done so far in life and recent years. Being on this site really does help me so much, I am thinking perhaps a support group would be good for me too that I can go to, even though Mum cannot go anywhere at the moment I can still go to one with carers I imagine.

Your comment about happiness made me laugh - as I sometimes really do feel happiness and a sense of calm which has been so rare over the last many years and it is wonderful when I feel it - I am sure it is the same for you.

The baby steps are also vital and I am going to continue with that - I spent a lot of time years ago feeling so overwhelmed with the enormity of everything that sometimes I would just go on hour by hour to get through. Also I am definitely going to set my boundaries - having been to rock bottom I will never go down there again and I realise the importance of boundaries so much better now. Anyway, I won't rant on any more, it was such a good message that you wrote and thank you for taking the time to write it. I wish you all the very best, Sarah

SarahL I am sure you are not alone. Since my Mum was diagnosed 9 years ago it has felt like this disease and her needs have dominated my whole life and everything else has suffered, my health, my career, my other relationships and my sanity- and I was not her primary carer. In Sept 2015 she went into care. It took a while to settle her there but by Sept this year I had relaxed a bit and felt I was coming out of a big black hole and starting to reclaim my own life and some HAPPINESS (remember that feeling folks?)

Then in Oct this year my Dad was diagnosed with advanced bladder cancer.
2017 will be spent helping him through any treatment and outcome.

What I have learned from Mum's illness and hope to apply to my new situation is this. Other people's illnesses, even a beloved parent are their illnesses they are not yours. You are still well and healthy and at your own life stage. You will want to support where you can but you are also entitled to your own life and to put your needs first- unless some emergency is taking place and you are needed. Much as you love them you can't make their lives your life or put EVERYTHING on hold, because how long will on hold be - one year, ten years, maybe the rest of your life? What will your health be like by the end of that? How much love will you be able to give them if your own needs are not being met and you are not taking care of yourself?
So my advice to Sarah, myself and all carers for 2017 is this, take every piece of help that is offered to you. Ask yourself if you are being over-responsible and not handing over the care to others i.e. the care home, the medical professionals and others where you can reasonably confidently do so. Do you need to make so many visits, question every medical decision and what could you do with the free time you would gain, if you didn't to sustain your own life and happiness. It is so easy to lose the boundary between your own life and the PWD in all of this, however I have come to believe that is unhealthy and unhelpful ultimately to all to do this. What this looks like in practice will be different for everyone.
Shedrech gives great advice. It's baby steps. Choose something and make a small change. Then repeat until you find that balance....which will need adjusting and readjusting as circumstances change. Sarah I wish you and all talking point users courage strength and love in 2017. Hope it helps to know you are definitely not alone!

 

[SarahL]

Thank you Georgina for your message. It has helped me very much to read of your experiences and I am going to buy the book you recommend. I too am conflicted when it comes to visiting my mum (as I do currently go 3 or 4 times a week) and i am trying very hard to do away with the guilt although it doesn't always work but I talk to myself as I have already given up much of the last ten years and know i have always done my best. I also work full time and am bringing up my daughter so I also know I'm a strong, capable person. I hope you are getting some respite now both your parents are in the CH and you can focus a bit more on you and your family. Thank you again foryour support, Sarah

Hi SarahL,


I echo so much of what others have said.
I do know what you mean. I feel daunted at the prospect of the years ahead after my parents moved into a CH in the summer. Sometimes I just don't want to visit and also have constant conversations with myself about the situation (was it the right thing to do, could I do more etc etc). But, I also have to tell myself they are well cared for and as well as can be, and that I also have to focus on my life - I try to imagine having a conversation with my parents at my age - I'm certain they would be telling me they want me to live my life and not feel guilty. This doesn't mean abandoning them, but I hope there is room to continue the caring, but also to focus on me and my immediate family. It's difficult to make sense of it all sometimes. I read a very helpful book recently called Loving Someone with Dementia (Pauline Boss) which I took a lot from. It deals with the ongoing and ambiguous loss/grief that dementia brings.
Do something for you but don't feel guilty. It may help to talk it through (with a counsellor) too. Wishing all the best. Georgina X

 

[Moose1966]

New on here

Hi I have read your posts and I could have written them myself everything you say is so similar to my situation. How are things now for you