Are you being kind to yourself?

[skaface]

Well, are you?

I see how much we all have to deal with, and in a way I'm lucky in that I don't live with my mum (I think I would have swung for her by now) but even I find myself having to remember to be kind to myself. I'm generally on tenterhooks waiting for the phone to ring informing me of the latest crisis and I don't think I will really be free from that feeling when she goes into a home, which will be sooner rather than later.

Tomorrow I will be going to see the Threepenny Opera at the local cinema which will be broadcast live from the National Theatre and I'm looking forward to it immensely. My phone will be switched OFF.

Those of you that live more closely to this disease than I do, are you able to have some respite? We put our own lives on hold, and it's so unfair.

 

[Princess t]

J

Well, are you?

I see how much we all have to deal with, and in a way I'm lucky in that I don't live with my mum (I think I would have swung for her by now) but even I find myself having to remember to be kind to myself. I'm generally on tenterhooks waiting for the phone to ring informing me of the latest crisis and I don't think I will really be free from that feeling when she goes into a home, which will be sooner rather than later.

Tomorrow I will be going to see the Threepenny Opera at the local cinema which will be broadcast live from the National Theatre and I'm looking forward to it immensely. My phone will be switched OFF.

Those of you that live more closely to this disease than I do, are you able to have some respite? We put our own lives on hold, and it's so unfair.

Hope you have a nice time tomorrow..I too don't live with my mom but absolutely hate it when the phone rings or when I'm driving down to her house the closer I get the more I feel sick! I really feel my life is on hold and my children and us as a family are missing out on living. My poor mom if she knew his we felt would be devastated.

 

[irismary]

Not as much as I should be but getting better! Booked my lovely husband into day care for a second day each week so that gives me 9 to 4 ish on 2 days and I get a couple of hours once each week when he has a sitter. So its the gym, hairdressers, occasional massage or facial and now he has settled I feel a shopping trip coming on Its still hard as he follows me everywhere but it helps both of us. I recommend it! Oh and I have a concert booked in November. David Essex.

 

[Peirre]

Many of us sacrifice huge parts of our lives to care for a PWD, wether that be employment, finacially, socially, relationships, & more, putting our whole lives on hold. It's no wonder we get stressed, frustrated, & angry, the feeling that your whole spirit & personality is being crushed under the burden of care. I'm suprised that some carers arn't secretly wishing for their lives back. The hardest part is to learn to channel those emotions in a way that can do good. Know & admit when your overwhelmed before you break. Which is why taking time out is important.

 

[Georgina63]

Well, are you?

I see how much we all have to deal with, and in a way I'm lucky in that I don't live with my mum (I think I would have swung for her by now) but even I find myself having to remember to be kind to myself. I'm generally on tenterhooks waiting for the phone to ring informing me of the latest crisis and I don't think I will really be free from that feeling when she goes into a home, which will be sooner rather than later.

Tomorrow I will be going to see the Threepenny Opera at the local cinema which will be broadcast live from the National Theatre and I'm looking forward to it immensely. My phone will be switched OFF.

Those of you that live more closely to this disease than I do, are you able to have some respite? We put our own lives on hold, and it's so unfair.

Recently yes, as my mum and dad have moved into a CH. Prior to that I was helping to support them living at home (I live nearby) and I now realise I never wanted to be too far away In case there was a problem. I turned down many social things as I was too worried about being away. I would dread the phone ringing and so on. Very stressful. They went for 2 weeks respite whilst I went on holiday, and I was able to relax but always in the back of my mind was returning home and and what this might bring. I'd rather they didn't need to be in a CH but I am now able to enjoy more freedom and feel I have more control over my life!

 

[saskia]

This thread has really helped me tonight, as evening calls with crisis/ asking what hospital dad is in ( he died 4 yrs ago) are almost a weekly event........I dread the hours between 8.00-10.30. As that's when the phone goes, mum has had a sleep & wakes up disorientated.....good to know I'm not the only one who stresses like this.

Me time........work! From 7.30 till 5.30, I can almost.......relax. I call mum mid morning & always have a lovely chat as its early in the day, she's good as she's done her jobs, took the dog for a walk & as selfish as this sounds, I put my phone on silent & if she does ring, I'll go to the loo & call her back.

Also, again, selfishly, my oh is working from home at the moment, so I know he is 10 mins away from mum if need be.

Oh & I love reading!! Once 10.30 comes,ill be in bed, with my book, knowing that mum is also in bed!!

I know it will get worse, but for now, this is OK.

I too cancel many a weekend away, cancel nights out as get too worried about mum....oh is brilliant, I have a brother who is the most selfish person ever, he is on his 5 the holiday of the year as I type!!

Night all, thanks for reading

Sas

 

[Meppershall]

I don't live with my dad, and I sometimes think I don't have the right to be as exhausted as those of you who care for someone at home, but I am always on edge and forever stressed.
I go to him twice a day, despite having carers visit three times a day, because they won't assist with medication (that's a whole other drama - some my fault, some their's), but this whole situation is never ending. He now has a UTI and I was at the DR's this morning at 7.45am waiting to see if I could get an appointment - luckily they can fit him in later. We were at the DR's last Thursday, we'll be there again today, he has the hospital on Monday and another DR's visit the following Monday. Two hospital appointments last month, more in November and I've lost count the amount of times we've been to the surgery this year for blood tests, appointments, diabetic nurse etc., plus 24 visits a year (at least) to the pharmacy, and all of this has to be fitted around a ful time job and I have no help from any other family member.
So, I guess when I look at all of that I do have the right to be exhausted lol but we carry on and find the energy although at the minute I wish I was sat at home with my cats having a cuddle on the sofa cause I've got a stinking cold and am feeling just a little bit sorry for myself

 

[daughterofpat]

I don't live with my dad, and I sometimes think I don't have the right to be as exhausted as those of you who care for someone at home, but I am always on edge and forever stressed.

Oh yes you do have the right, and it is exhausting. There is only so much of yourself you can give, so make time for yourself and know your limits! This from someone who took on too much and did not, until it was a bit too late! My mum is now in a care home after too many crises. I reached a tipping point where I knew it couldn't go on. Mum now in a CH and I have got some of my life back, but think the guilt stays with you. Cuddle the cats and I hope you get over your cold soon!

 

[paisley pattern]

I don't live with my dad. I see him and phone my mum a few times a day to see how things are. I now feel guilty if I go away anywhere as I feel as though I'm deserting them, although I'm on speed dial to them. My mum tells me not to worry, but I can't help it. I'm about to go away for a weekend with my walking group, but will feel bad about it. I was supposed to be seeing a counsellor about other matters, but decided to cancel it as I can't even think about my own stuff at the moment. My heart goes out to my dad and my mum.

 

[marionq]

I guess most carers respond as I do "I'm fine" when anyone asks how I am. After a particularly difficult six weeks I had to admit that I wasnt fine and made an appointment at the doctors and inevitably found I needed pills for high blood pressure. Stress will get you one way or the other. Two weeks on I have lost half a stone, have appointments for a variety of tests, have totally given up alcohol (I only drank one small glass of wine with my dinner) and generally feel better. John also has a fourth day at day centre so that helps.

Taking care of yourself means changing your priorities and even being a wee bit ruthless in your decision making.

 

[Meppershall]

Oh yes you do have the right, and it is exhausting. There is only so much of yourself you can give, so make time for yourself and know your limits! This from someone who took on too much and did not, until it was a bit too late! My mum is now in a care home after too many crises. I reached a tipping point where I knew it couldn't go on. Mum now in a CH and I have got some of my life back, but think the guilt stays with you. Cuddle the cats and I hope you get over your cold soon!

Thankyou daughterofpat, I will definitely get some cat fussing time in tonight if I can

It's jut so very difficult to switch off, even when we are not there with the people we care for. I've been to see my dad at lunchtime, and he really is off the planet today, and for the first time we have had toilet issues - and there is a lot of mess to clear up. I couldn't face it at lunchtime, so awful as this sounds I had to leave it. After we have been to the DR's later I am going to have to clear it all up, and I'm gagging already at the thought. I really don't know how people cope with this. I just don't know how soon I can start making nore permanent arrangements without people thinking I've given up too quickly. Maybe anti-biotics for his UTI will bring him back round again, but if he stays like this then there is no way we can carry on with him at home alone and harsh as this sounds I cannot have him living with me. That truely would be a nightmare I cannot begin to contemplate

 

[daughterofpat]

Meppershall, I do know. I had to clean all the way down the stairs once, and that was one of the tipping points!!! And I also sometimes torment myself by saying I gave up too quickly! Please don't do that. I know my mum was not safe by herself anymore, I know the home care company could not fill her needs, that the neighbours (lovely as they are), could not carry on looking out for her, and I couldn't manage the nightly distressed phone calls. I briefly thought about her living with me. But, how would that have been better? I have a job and a little girl, and it wouldn't have been fair to my daughter, to me, or in the long run for my mum if she had come here. I couldn't have given her what she gets now at the CH. I wouldn't have the breathing space to be a daughter. And I know, that if mum was still mum, the last thing she would want, absolutely, would be for me to feel bad about the decision I've made. Ha ha, I know these things, but don't always hear myself. Hope the antibiotics work for your dad. Keep sane x

 

[Meppershall]

Meppershall, I do know. I had to clean all the way down the stairs once, and that was one of the tipping points!!! And I also sometimes torment myself by saying I gave up too quickly! Please don't do that. I know my mum was not safe by herself anymore, I know the home care company could not fill her needs, that the neighbours (lovely as they are), could not carry on looking out for her, and I couldn't manage the nightly distressed phone calls. I briefly thought about her living with me. But, how would that have been better? I have a job and a little girl, and it wouldn't have been fair to my daughter, to me, or in the long run for my mum if she had come here. I couldn't have given her what she gets now at the CH. I wouldn't have the breathing space to be a daughter. And I know, that if mum was still mum, the last thing she would want, absolutely, would be for me to feel bad about the decision I've made. Ha ha, I know these things, but don't always hear myself. Hope the antibiotics work for your dad. Keep sane x

Thankyou xxx Sadly he took a turn for the worse and I had to get the ambulance to him Thursday night - he has now been admitted to hospital and although he is convinced he is in prison and not liking the situation, I know he is in the safest place and I can actually relax for a few days and let the caring and worrying be done by the professionals. When he was being assessed at 4.30 Friday morning (yawn), a very lovely young doctor suggested it may be time to consider a NH placement, I was very alert in that moment I can tell you lol I think he could be right, and for every other person telling me not to do it too soon I will desperately cling on to his words and his assessment, and I will quote him often

Enjoy whats left of your weekend, I shall raise the glass of wine I am currently enjoying to all of the wonderful carers out there....cheers everyone

 

[daughterofpat]

Thankyou xxx Sadly he took a turn for the worse and I had to get the ambulance to him Thursday night - he has now been admitted to hospital and although he is convinced he is in prison and not liking the situation, I know he is in the safest place and I can actually relax for a few days and let the caring and worrying be done by the professionals. When he was being assessed at 4.30 Friday morning (yawn), a very lovely young doctor suggested it may be time to consider a NH placement, I was very alert in that moment I can tell you lol I think he could be right, and for every other person telling me not to do it too soon I will desperately cling on to his words and his assessment, and I will quote him often

Enjoy whats left of your weekend, I shall raise the glass of wine I am currently enjoying to all of the wonderful carers out there....cheers everyone

Sorry to hear your dad took a turn for the worse, but sometimes, maybe, that can be the wake up call. I imagine the hospital will have an assessment done by an OT, and if their report suggests your dad needs help, then SS will get involved...know what support you need at that point. Wish you lots of luck!

 

[Ihtl]

Not particularly. More recently I've been making more of an effort to make sure that I have time to do things for myself, from going to the gym, reading books and taking advantage of some good deals to have a couple of day trips.

I have to give my brothers a kick up the **** because despite all of us living together I seem to be the one who does/organises caring and I've inherited the household so to speak.

Maybe I'm being a bit naive, but they're more mindless than selfish which often leaves me with everything to do.

I'm hoping to book two to three weeks of respite in the coming weeks which should help immensely. I'll use the time to catch up with a few friends and go to the cinema for the first time in over a year.

 

[Pear trees]

The last time I visited my mum she was even more nasty, verbally abusive and rude than normal and told me she never wanted to see me again, I never do anything for her etc etc, and got very upset until I left so I have not been to visit since. She has carers and my SIL visiting daily who sort out any immediate problems. She is OK with them but has always been nasty to me. My very presence upsets her so I will no longer visit.
I still sort out her finances, daycare, food deliveries etc but feel much better knowing I do not have to see her.

 

[Meppershall]

Not particularly. More recently I've been making more of an effort to make sure that I have time to do things for myself, from going to the gym, reading books and taking advantage of some good deals to have a couple of day trips.

I have to give my brothers a kick up the **** because despite all of us living together I seem to be the one who does/organises caring and I've inherited the household so to speak.

Maybe I'm being a bit naive, but they're more mindless than selfish which often leaves me with everything to do.

I'm hoping to book two to three weeks of respite in the coming weeks which should help immensely. I'll use the time to catch up with a few friends and go to the cinema for the first time in over a year.

Morning lhtl x It sounds as if you deserve your period of respite. It will be good for you to spend the time being 'normal' again x I think sometimes, it's not until we get a break from the everyday 'dementia' roadshow, that we actually remember who we are. I lose a bit of my own identity everyday and become more and more referred to as the 'carer', or the 'daughter' or the 'person looking after the affairs', it's actually quite soul destroying if you sit and analyse it for too long xxx

Oh, and when you do kick your brother up the a**e, make sure it's good and hard !!

 

[Meppershall]

The last time I visited my mum she was even more nasty, verbally abusive and rude than normal and told me she never wanted to see me again, I never do anything for her etc etc, and got very upset until I left so I have not been to visit since. She has carers and my SIL visiting daily who sort out any immediate problems. She is OK with them but has always been nasty to me. My very presence upsets her so I will no longer visit.
I still sort out her finances, daycare, food deliveries etc but feel much better knowing I do not have to see her.

Bless you Pear trees, xxx That must be really hard for you xxx I've had similar situations recently where I've lost it with my dad and told him to stop talking to me like dirt. On Friday morning when we were in the hospital he told me to p**s off, and as I had been up for 23 hours straight I gladly did so lol Of course by the next day he had forgotten it, but it does hurt. If there were more people to help me then I think I would do as you do and not go back to visit him as I do wonder if it is me winding him up as well as the dementia, but unfortunately he is on his own and so I don't have the choice. I guess we must all deal with the horrible situations we find ourselves in, as best we can, in order to maintain our own sanity

take care and have a lovely day x

 

[DMac]

Am I being kind to myself???

I haven't posted on here for a while, but this thread caught my attention.

I've made a real effort to 'be kind to myself' since Mum-in-law went into a care home a few months back. Anyone looking at my life from the outside would justifiably think, well, she's got it sorted then! Holidays, regular trips out, regular exercise, good food, a few hobbies and interests, even time for some volunteering work...what's not to like about her life??

Except it doesn't feel that way. I, too, go through the heart racing moments whenever the phone goes, though thankfully the tears, crises and emergencies are now mostly in the past. I'm still on tenterhooks though. Also, I can't shed this awful persistent feeling, that I'm not good enough, whatever I do is not good enough....guilt monster sitting squarely on my shoulders!!

Someone asked me recently, how long could I hold up a glass of water in front of me, at arm's length? Twenty minutes? Half an hour? It doesn't matter. The point is, there comes a time when my arm would get fatigued, and I would drop the glass, no matter how small the glass, or how much or little water was in it. I think I have, metaphorically, dropped the glass sometime over the past few weeks.

I know I have so little to complain about and so much to be thankful for, especially when I read about other carers' experiences. God bless you all, wherever you are in your caring journey. You do such a fantastic job. xxx

 

[Ihtl]

Morning lhtl x It sounds as if you deserve your period of respite. It will be good for you to spend the time being 'normal' again x I think sometimes, it's not until we get a break from the everyday 'dementia' roadshow, that we actually remember who we are. I lose a bit of my own identity everyday and become more and more referred to as the 'carer', or the 'daughter' or the 'person looking after the affairs', it's actually quite soul destroying if you sit and analyse it for too long xxx

Oh, and when you do kick your brother up the a**e, make sure it's good and hard !!

Thanks, I definitely understand what you mean about identity. Suddenly my life isn't about me anymore; being in my mid twenties and not having children or a serious partner I never imagined having so much responsibility for another person or being involved so much in another person's life. I certainly never imagined I'd miss being at work too!