Dealing with my emotions

[twinklestar]

I will be honest with you I am finding it hard, at this precise moment, to deal with the ups and downs of being a carer. Yes, I know it could be worse - I have a friend at work whose mum in a home with MND and she is not very well at all.

I have just come home from a brief night out at my boy friend's and had to put mum back to bed - see my other thread. I know I will feel tired in the morning but I had to post these threads.

We are constantly trying to move forward. First getting the diagnosis, then claiming Attendance Allowance, then getting carers in. Recently had to put a key safe in as mum locked herself out. Currently trying to get mum to go to day care. Have been to look at it and it looks ideal. Need to get mum to go on a visit but cannot do that until we can get transport sorted out. I won't even discuss what needs doing in the house, getting and LPA and a Will sorted, etc.

I was recently quite pleased with myself as my sleep pattern had started to get better and I was feeling really sunny. I have a feeling that is about to change.

Would welcome thoughts on dealing with the ups and downs.

 

[cathykins]

I will be honest with you I am finding it hard, at this precise moment, to deal with the ups and downs of being a carer. Yes, I know it could be worse - I have a friend at work whose mum in a home with MND and she is not very well at all.

I have just come home from a brief night out at my boy friend's and had to put mum back to bed - see my other thread. I know I will feel tired in the morning but I had to post these threads.

We are constantly trying to move forward. First getting the diagnosis, then claiming Attendance Allowance, then getting carers in. Recently had to put a key safe in as mum locked herself out. Currently trying to get mum to go to day care. Have been to look at it and it looks ideal. Need to get mum to go on a visit but cannot do that until we can get transport sorted out. I won't even discuss what needs doing in the house, getting and LPA and a Will sorted, etc.

I was recently quite pleased with myself as my sleep pattern had started to get better and I was feeling really sunny. I have a feeling that is about to change.

Would welcome thoughts on dealing with the ups and downs.

Hi Twinklestar

Yes, there certainly are ups and downs, with dealing with your emotions, and trying to get help. Everything seems to take ages to achieve, and it often feels like you are entirely on your own fighting a battle.

I was so pleased when I found this site, and realised that I am one of many, struggling to cope with this impossible condition. There is loads of information and support here, and I find it comforting to read how others cope with all the complications in dealing with different situations.

I am writing this at 3.40am as I am unable to sleep and wondering if my lovely Mum (who is now sadly in a care home) is also unable to sleep. She has vascular dementia, and on most of my recent visits, she has cried almost constantly, which breaks my heart. I know the home is the only option and that she is in the best place, but I still manage to feel guilty.

I find the only way to deal with the emotions is to talk about it, either on here, or with someone who understands. Often, there is no answer, but it just helps to unload and share thoughts with others.

My heart goes out to you

Cathykins

 

[lizzybean]

I know exactly how you feel. I am past the point where you are now, all the things (bar day care) that you mentioned are in place. I think for me the relentlessness of it all really gets me down, I can see no end to it all. I need to find a way of becoming more positive (normally I'm a glass half full person) & try to take MIL along with me!

That doesn't help you any does it!!! Sorry, just trying to let you know that I understand. None of it is easy.

Take care. Let's hope others will be along with practical ideas for coping.

 

[Rathbone]

No cure-all from me I'm afraid, just sympathy and understanding and encouragement for you to come here for solace. Since joining, I feel so supported and know that whatever I say, someone - often many - will be right along to help me feel better and good about myself. Try to stay in each and every moment, look only forward and never look back, we aren't going that way. Be kind to yourself and do what you can,that's all there is for it. Try never to compare yourself with others, every struggle is unique and nobody is better than the next. And most important of all, don't forget to laugh! Loving thoughts. X

 

[Bambini]

Can't offer help on the ups and downs but do appreciate what you're going thru. Also went out last night, had to put mum to bed when I got home. She was shaking with rage at the time I got home (11.20) (Im 42!) and boy am I paying for it this morning. I go out once a week but trying to stay strong and keep it as my night out. Have been thru the you don't care about me conversation and now we are just not talking. We have to keep calm and true to ourselves whilst caring deeply for our loved ones. Don't have answers but thinking of your situation and hoping things improve x


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[kkerr]

Can completely sympathise with the ups and downs! 3 years of caring for my Mum at home, whilst trying to hold down a job, etc. A few tricks/pointers - none of them make it "easy" but learnt some of them the hard way, would be good if someone else could not have to make the same mistakes as myself:

1) acknowledge your feelings - its ok to be angry, sad, exhausted. Its even ok to be HAPPY! I found this one the hardest! When you do get a moment to yourself or get to do something you enjoy - let yourself feel HAPPY - even if just for that moment. It is so easy to have this guilt around your neck that you cant even enjoy your brief happy/calm/peaceful moments. You need these.

2) Small steps. I know it feels overwhelming all of things you have to do, put in place for your dementia loved one. We had carers/day centres/volunteers/SS/attendance allowance/modifications to the house etc. It is extremely overwhelming to deal with.
Set small goals - week by week. No goal is TOO small! Even if its just "replace front door lock" - that's ok, get that done this week then worry about next week. Eventually , you will look back and realise how much you have accomplished - feel proud. You did this for someone you love and if they could, they would be proud of you.

3) Don't plan too far ahead! Dementia is a constantly changing situation. Deal with the day then move on to the next. If you try and think or plan too far in the future, a) it will feel overwhelming/suffocating/hopeless, b) it may be wrong - things can change drastically in a short space of time. Deal with today, think about tomorrow, but don't worry too much about "the future". The only caveat to that - start thinking about long term care. Even if its just in the abstract - "what will I do when my loved ones needs exceed what I am able to provide"?? This may be a long way off - but having a rough idea, even start to find out what care homes are in your area. If you feel up to it - visit one or two - just start the process. It may be years away, you may never need it - but start to build that safety net before it becomes essential.

4) Look after yourself in whatever way necessary. Take time to yourself, when you need it - loved one safe - than take 15-30 mins on your own. Go outside, walk to a local shop, sit and read a book, lock yourself in the bathroom if necessary. Share on website, talk to friends, what ever you need. Don't stop doing it. You are NEVER less important than the person you are caring for!

Hope above helps -learnt many of them the hard way, still learning!