How to cope?

[Wooley]

Hi. I am new as I only registered today but no point on being here if I don't now use it! I look after my Mum (she is 79), she was diagnosed with Alzhiemers about two years ago, and has been living with me for two and a half years. Initially it was difficult to move her away from her home and friends and get used to living with me. But it was nice to spend some time with her, and be able to take her out and see her enjoy herself. However over the last few months I have been getting more and more frustrated and short tempered with her, I just don't seem to be able to help myself. I hear myself snap at her, I just talk before I think!! I have been trying to take regular breaks but am feeling really selfish as all of a sudden I just feel that I want my life back! Has anyone got any bright suggestions on how to take a step back and get a grip?

 

[Butter]

Hello Wooley ... that is such a good description of what it's like. I'm sure many of us recognise that.

I think you may have taken the most important step by starting this thread: it kind of acknowledges the situation and that in itself is helpful, in my experience.

Can you now begin to structure time to give yourself some space? That seems to me to be the best way to continue caring - so even if you give yourself a lot of space - really at lot - it is helping you help your mother in the long term.

I'm not clear if your mother can be left alone. If she can't, I suggest you arrange care straight away. If she can, you need evenings out, days out, weekends/holiday away ....... You need them anyway so the best thing, I think, is for you to start setting them up.

I hope others will be along with more ideas ,, but good luck ... please keep posting ... I have found this site invaluable

 

[Dunkery]

Welcome Wooley to TP. I registered only last month and have found this forum a tremendous source of information, encouragement and support so I do hope you will find the same. You are certainly not selfish! It is important to look after yourself because if you are ill, who will look after your mum then? Will your mum go to a day care centre one or two days a week? At least then you would have some guaranteed time for yourself. Would she go to respite care for a few days or a couple of weeks?
I have felt many of the same feelings as you (and still do a lot of the time) but when I started to get tearful I did go to see my doctor, on the advice of friends. He was very understanding. I am on some medication which has helped me to be a little calmer and therefore not to snap so much at mum. This may not be the right for you but at least talking to someone does help. He has also arranged for me to go on a "Looking after me" course in my local area, starting in September. I have also registered on a mindfulness website and try to find time to follow the regular exercises on there. When I manage it, I always feel calmer! I hope these suggestions help you. Be kind to yourself-and tell yourself you are doing the best you can-that is all any of us carers can do! Take care.

 

[velo70]

How to cope

Hiya Wooley, More or less parallel in that my wife is same age as your mum. I try to control my frustration (anger) better now. IF they behave oddly, ask yourself if it REALLY matters. Most things dont, nor will they affect the universe, except for our own little part. I think the anger is at the disease and what it does, but is mistakenly directed at the person, which achieves nothing. We try to share and remember all the good bits, which in my case are becoming precious. Your mum is lucky to have you. What does demoralise me most is the carers who keep reminding me "it doesnt get any better", that one really hurts. Respect and regards, and try to take a bit of quality time for your own well being.

 

[Pennie]

Hi Wooley, welcome!

I am in a slightly different situation (but similar really) my husband and I moved into my mother's house to look after her. It is much bigger than ours and dormer bungalow sort, so the obvious choice.

I too am finding it harder and harder as time goes on, very nearly a year now. I have a magic lady who comes in for two hours each weekday to do a certain amount of personal care and cook Mum's lunch. I can take those hours off but don't always, because I don't always know what to do with myself in that time. Sometimes my husband and I go for a coffee in town and sometimes I go to a supermarket but I am out in the sticks a bit and have to guage my time so can't do too much but at least it means getting out into the real world (which is becoming more and more strange!)

Anyway our carer lady used to work in a nursing home so knows a good deal and is a real help to me as she has seen the progression before and can advise me and keep me on the straight and narrow. I wonder if it might be a help if you could find someone like that who could do some things and give you time off.

I have to admit to feeling I need more time away but we did have three nights in June so suppose I can't complain.

Sorry for the ramble, having a bad day today and felt like a few minutes here...

 

[nita]

I think it is good that you have noticed yourself "snapping" and taken a step back to look at the situation. I think you probably need more regular breaks as you are feeling under stress.

In our area we have an organisation called Carewatch who provide a sitting service so that carers can have some time off. Over a year, a carer is entitled to the first 30 hours free; I think after that you can get a further 30 hours if you need it by getting a "prescription" from the doctor, after that there is a charge.

Did you also know that as a carer, you can get a non-means tested direct payment to spend money on doing something for yourself? I had one to pay for a Senior Railcard and Art Pass as my mother is now OK at being left for some hours so I can sometimes get out for nearly a whole day. This is something Social Services can provide. I think you probably have to have a carer's assessment to get this.

Apologies if you already know about these things.

 

[Pennie]

I think it is good that you have noticed yourself "snapping" and taken a step back to look at the situation. I think you probably need more regular breaks as you are feeling under stress.

In our area we have an organisation called Carewatch who provide a sitting service so that carers can have some time off. Over a year, a carer is entitled to the first 30 hours free; I think after that you can get a further 30 hours if you need it by getting a "prescription" from the doctor, after that there is a charge.

Did you also know that as a carer, you can get a non-means tested direct payment to spend money on doing something for yourself? I had one to pay for a Senior Railcard and Art Pass as my mother is now OK at being left for some hours so I can sometimes get out for nearly a whole day. This is something Social Services can provide. I think you probably have to have a carer's assessment to get this. Apologies if you already know about these things.

That sounds interesting Nita, what is it called?
Mother has Attendance Allowance and I have managed to get Carer's Allowance too, but is this something over and above those two?

 

[nita]

Yes, Pennie, it is. However, now I look at the government website, I think it is only applicable to the carers of people who are funded by Social Services, as is the case with my mother. II only found out about it after some time caring for Mum. I originally asked for the fees for two evening classes for a year and they were willing to give me £400 but, in the event, I didn't take it up as, at that time, Mum couldn't be left in the evening and I also thought I might not feel like going out on the cold wintry evenings.

You have to have something specific in mind that you want to do - a hobby, for example. It was explained to me as a sort of "bonus" for caring.

I don't know if the amount they will offer depends on the LA you belong to. I expect they may all be cutting back on this.

This is an explanation of what it is and the type of activities you can get the payment for:-

http://www.carersuk.org/help-and-ad...rt/direct-payments/direct-payments-as-a-carer

That sounds interesting Nita, what is it called?
Mother has Attendance Allowance and I have managed to get Carer's Allowance too, but is this something over and above those two?

 

[Pennie]

Yes, Pennie, it is. I only found out about it after some time caring for Mum. I originally asked for the fees for two evening classes for a year and they were willing to give me £400 but, in the event, I didn't take it up as, at that time, Mum couldn't be left in the evening and I also thought I might not feel like going out on the cold wintry evenings.

You have to have something specific in mind that you want to do - a hobby, for example. It was explained to me as a sort of "bonus" for caring.

I don't know if the amount they will offer depends on the LA you belong to. I expect they may all be cutting back on this so get a claim in quickly!

This is an explanation of what it is and the type of activities you can get the payment for:-

http://www.carersuk.org/help-and-ad...rt/direct-payments/direct-payments-as-a-carer

Thanks so much - what a wonderful website!
I must read up on the looking after your back section as well - the strain of lifting and stooping to feed (must make myself sit) is starting to tell...

 

[Wooley]

Thanks

Hi. I was amazed when I returned after lunch to have recieved so many responses. Thank you all so much. Even though it may not have answered the question it is wonderful to know that I am not alone. I will respond to a few people directly but I did want to say a general thank you to everyone. So thanks!

 

[nita]

Just wanted to say sorry I didn't specifically answer your question, just in a general way. If you are really wanting your old life back, it may be time to consider whether you want to carry on caring for your mother, at least not single-handed, if that is what you are doing?

Is there perhaps a reason why you are finding her behaviour more irritating? Are her symptoms changing, getting worse? Does she perhaps need reviewing by a doctor and different medication prescribed. Is she prone to infections and that makes it worse?

Also, you may need help with the actual caring which depends on your mother's financial circumstances as to whether you will get help from Social Services or your mother will have to fund this herself.

Perhaps if you tell us a bit more we can try to help.

 

[Wooley]

Hi Dunkery

Thanks for your reply. You are quite right in that I cannot afford to let myself get too run down, as there is no one else to look after Mum. I can still leave her for an hour but I am finding it more scarey to do so. She does go to a day centre once a week (today actually) but she keeps telling me she doesn't like it and doesn't want to go. She does go into respite care, but whatever they are like she always gets so insecure and frightened that when I get her home it takes days to get her back to normal and by then I feel like I need another break!! She does go to her room a lot so it isnt that she is taking up all of my time but whenever I think I am going to get a quiet 5 minutes or need a break, it is always then she decides she wants to talk to me, or to do something. It is starting to feel like there is no time of my own, as everything has to be done now! Maybe I just need to plan better and use the time she is in her room to the best advantage!? I think that just writing this all down is being a big help. So thanks again for your reply, hope things are going ok for you. Take care yourself, as at the end of the day if you don't nobody else will!!

Welcome Wooley to TP. I registered only last month and have found this forum a tremendous source of information, encouragement and support so I do hope you will find the same. You are certainly not selfish! It is important to look after yourself because if you are ill, who will look after your mum then? Will your mum go to a day care centre one or two days a week? At least then you would have some guaranteed time for yourself. Would she go to respite care for a few days or a couple of weeks?
I have felt many of the same feelings as you (and still do a lot of the time) but when I started to get tearful I did go to see my doctor, on the advice of friends. He was very understanding. I am on some medication which has helped me to be a little calmer and therefore not to snap so much at mum. This may not be the right for you but at least talking to someone does help. He has also arranged for me to go on a "Looking after me" course in my local area, starting in September. I have also registered on a mindfulness website and try to find time to follow the regular exercises on there. When I manage it, I always feel calmer! I hope these suggestions help you. Be kind to yourself-and tell yourself you are doing the best you can-that is all any of us carers can do! Take care.

 

[Wooley]

Hi. The temptation to start looking for a home is very tempting. But as she is still having good days and can still enjoy things, and we do go out together so it seems harsh to be considering this now. When she has stayed in care homes (for respite) she gets so scared and it is horrible to see her like that, I can't bring myself to put her in permanently until such time as she has deteriorated more. Think that over the last few months she has started to demand more of me. I will have done caring all day, finally get into bed and then she will be standing in the doorway wanting to just talk to me or wanting me to do or get something for her. I don't know why I am more frustrated by this now than I was, I just am. It seems that when I am doing something I just don't want to be distracted and called away to do something else. I think in the early stages of her moving in with me it was nice re-engaging with her and I haven't minded the caring duties it is just suddenly this insistence of dealing with things now that I am having trouble with. She came in at 6am this morning when I was asleep and said "Pill time", I didn't want to get up, I didn't even want to be awake!! but because she is out at the day centre today she wanted to be ready. Sorry whittering on a bit, I am sure after a while it will calm down!? Thanks.

Just wanted to say sorry I didn't specifically answer your question, just in a general way. If you are really wanting your old life back, it may be time to consider whether you want to carry on caring for your mother, at least not single-handed, if that is what you are doing?

Is there perhaps a reason why you are finding her behaviour more irritating? Are her symptoms changing, getting worse? Does she perhaps need reviewing by a doctor and different medication prescribed. Is she prone to infections and that makes it worse?

Also, you may need help with the actual caring which depends on your mother's financial circumstances as to whether you will get help from Social Services or your mother will have to fund this herself.

Perhaps if you tell us a bit more we can try to help.

 

[starryuk]

Has anyone got any bright suggestions on how to take a step back and get a grip?

I really feel for you. Is it just the two of you at home? I think that makes it even more difficult.

I wonder if your mum is rather like mine. Whenever my mum was staying with me, she would take over. Everything done her way.... At my sister's house Mum would not dare to do that because my sister has a husband. The old 'single' daughter (slave) syndrome.

I don't know your situation, but for me, I think I would want to get some kind of a job, part time, so that I would have a bit of a personal life for myself. For my mum, 'Going to work' seems to be an acceptable reason for leaving her. It all depends if your mum can be left at all I suppose....You would need carers to come in as well.

So, sorry no real bright ideas, except that to take a 'step back' perhaps you need to find something else to focus on (apart from your mum). You are allowed a bit of a life for yourself. Definitely. So please don't feel selfish...and don't give up trying to find a solution.

 

[Dunkery]

Hi Dunkery

Thanks for your reply. You are quite right in that I cannot afford to let myself get too run down, as there is no one else to look after Mum. I can still leave her for an hour but I am finding it more scarey to do so. She does go to a day centre once a week (today actually) but she keeps telling me she doesn't like it and doesn't want to go. She does go into respite care, but whatever they are like she always gets so insecure and frightened that when I get her home it takes days to get her back to normal and by then I feel like I need another break!! She does go to her room a lot so it isnt that she is taking up all of my time but whenever I think I am going to get a quiet 5 minutes or need a break, it is always then she decides she wants to talk to me, or to do something. It is starting to feel like there is no time of my own, as everything has to be done now! Maybe I just need to plan better and use the time she is in her room to the best advantage!? I think that just writing this all down is being a big help. So thanks again for your reply, hope things are going ok for you. Take care yourself, as at the end of the day if you don't nobody else will!!

Hi Wooley. I can relate to many points you raise. We do not have any other family and mum really does not like anyone else but me looking after her. As you say, when the person being cared for wants something done, you have to drop whatever you are doing and see to their needs. I think the unpredictability of things-being unable to plan your day etc can be VERY stressful. I mentioned to the CPN that when I do have a few minutes to myself I often feel I am not using the time productively but end up just reading or watching something on TV. She said that perhaps relaxing is probably just what I need at that moment, to recharge the batteries, so I shouldn't feel guilty! I'm afraid I don't know the answers but do sympathize!

 

[garnuft]

I wonder if your mum is rather like mine. Whenever my mum was staying with me, she would take over. Everything done her way.... At my sister's house Mum would not dare to do that because my sister has a husband. The old 'single' daughter (slave) syndrome.

This rings a lot of bells with me even though I am married with two sons.

Mam lives on her own and I am there every day bar one, every Sunday until recently she came to ours for lunch....
We eat at 5pm but the time changed to Mam's preferred time, and her preferred meals and her conversation, so there's five of us sitting around a table while Mam gives court.

Much unhappiness after 2 years of every Sunday being taken over, my OH works and spends little enough time in the house as it is, without Mam dictating the odds.
Caused some grief.
Now it's mine on Wednesdays for Tea and every other Sunday....she never wants to go to other sisters but we make her for my OH's sake.

She won't have outside help...'I have three daughters, I don't need help'.

She rows about any attempt to clean, give her tablets...
moans about not going anywhere or seeing anyone but my sisters and I see her every day and each take her out every week, then she comes to mine on Wednesdays and Sundays.

Her own mother was in a care home at the first sign of trouble and she had four daughters.

I don't know how you cope, somehow love and pity carries me over the pain barrier but for how long? I have no idea.

 

[Wooley]

Hi. The last twenty four hours have been very liberating, don't know why I hadn't signed up to this before. I guess at the end of the day any advice is useful but just to know there are so many people going through the same thing is in a strange sort of way comforting. In answer to some of the questions yes I do live alone, no Mum can't really be left alone for any length of time, and yes I appear to be the daughter slave!! I have two brothers and a sister but they live too far away to really be of any help, and yes my Mum acts very differently if any of them come to visit. But it is still her court as when they visit she monopolises the conversation and I hardly get any time to talk to them alone. It is hard to know if they believe how difficult Mum is getting? I am divorced (but this was nothing to do with Mum as she didn't move in until much later) and living alone (well apart from Mum), but I can understand how much pressure this would put on a marriage. If I had still been married then I think the original decision to let Mum move in may have been different! But I want to thank everyone again for all the comments, they really have helped and I am feeling more empowered and that I can make some changes that may take the pressure off. We mustn't let our caring role drag us down or change who we are or we really are lost!

 

[starryuk]

Hi Wooley

I am glad our observations etc have cheered you up a little. Hopefully, as you say, you can take a step back, consider your situation and find some ways to get some life of your own.

This may sound crazy, but I have had cats for many years. I have learned that it is very difficult for 2 female cats to live together in the same home (territory). Even one mother and daughter, who had a very harmonious relationship until the kitten reached maturity. Then it was continuous battles for dominance. (The mother always won!). I think the territorial thing comes into play with us as well ( mums and teenage daughters?).
Not that thinking/knowing it makes us any less stressed of course.

Anyway, please let us know how you get on.

x

 

[IloveNY]

Ohhh I can so identify

Hello

Reading through your posts, I found myself going "yes....and yes....and yes........."

Longer reply to follow (in a few days) Not at 6am

 

[nita]

Carer's Direct Payment

Just on the subject of the above which I mentioned earlier, I found another thread on this subject:-

http://forum.alzheimers.org.uk/showthread.php?55570-Pot-of-Money-for-Carers.