How do you cope?

[Sunflower10]

Hello All

I don’t know what I am doing wrong but I feel as though as I am jack of all trades and master of none. I am trying so hard to be a good mum, daughter, sister, wife and the all consuming carer that I feel as though I am spread so thinly nothing is good enough.

How do you all manage to stay on top of it all? I feel as though I am struggling now and I have not returned to work yet, I am still on maternity leave and due back some time after Christmas. I find that my constant thoughts are of what needs to be done with mum. Everything seems to irritate me and the people closest to me seem to be getting the full brunt of my emotions. My husband who couldn’t be any more supportive if he tried has to put up with my constant nagging. I even find myself telling him that it is wrong when he comes home from work and starts doing the washing up, that I hadn’t got round to doing. Nothing seems to be good enough.

I thank god that I have two beautiful boys aged 5 months and 20 months who provide me with the reason to get out of bed in the morning.

I keep telling my husband that it won’t always be like this but I fear the alternative. We either have mum as she is now at home with carers and us seeing to her every need or she will be in a home or worse.

I feel as though the true cost of caring is taking its toll on my family with no end in sight. We are waiting for a place at a local home but then the guilt will take over that I couldn’t have done more and I dread that day too. Mum is 61 and has had Alzheimer’s now for approximately 7 years and I have been caring for her now on a daily basis for about 4 years. She is now unable to do most things herself without constant help and assistance.

How do you all find the time to care and cope with everything else life throws at us.

 

[Christin]

Dear Sunflower my heart goes out to you. Of course, only you can make the decision about whether you can cope or not but you must ask, and accept, the help that is offered.

I am sorry I am not sure if your mother is living with you or you are visiting her daily but either way you will be exhausted. Your children need you. You cannot do everything, none of us doing everything! Every one has to give something up, for me it was going out to work, I simply couldn't cope. FIL lived with us throughout our children growing up, it wasn't all bad, but oh how I wished I had handled things differently all those years ago.

Take care of yourself. Don't be so hard on yourself. xx

 

[lin1]

Dear Sunflower

None of us can cope with everything.

You are under a great deal of pressure,with a young family, husband , mum and house to look after. Something has to give, Please dont let it be your health, the signs are already their that it is.

I know you have carers in but,they are not there all day are they, you however are.

I think you need respite care for mum as a matter of urgency, I know you dont want to hear that,but you cant go on like this for much longer can you?

you have a lovely supportive husband and he must be so so worried about YOU!!!

all we can do is our best, you are doing that and more but you do need a break, which will help keep you going till a place is available at the c h.

please keep posting it does help to talk on here.

 

[SheilaL]

Bless you, Sunflower - you have a big, big heart and are giving your utmost (hugs). However, despite your lovely hubby, YOU are the one in need of some (lots) of TLC. You're in a very vulnerable state, probably suffering from post natal depression as well as the unrelenting worry and guilt over your poor mum.

I've never been in your absolute situation, but we had my MIL living with us when my son was born. Thankfully she didn't have Alz, but even so, could be a trial at times.

I'm going to speak plainly - get help, ask, beg, DEMAND it. You and your family and your mum need and deserve everything you can get.

Others can undoubtedly help you more than I can, but I'm sending lots of love and hugs xxxx

 

[Jo1958]

Sunflower, hi
Cope, well I don't cope with everything and the thought of even attempting it is just too much to think about.

I hope that you can relax and enjoy your maternity leave with your babies and not get too stressed about all the whatifs that are out there looming in the future, this is a special time for you as a family and it would be great if you could enjoy it without letting the future intrude.

Respite for your mum is a great idea, it will give you a break and let you know how she copes in a CH, she might take to it like a duck to water and then the future will look very different for you all. I hope you can get it arranged for before you go back to work then on a regular basis.

Take advantage of all the help and support there is and don't worry about your handbag as you spin around trying to get everything done (sorry this is a Wonder Woman reference and probably right out of your age group ) We all find our handbags are right there when we need them.

Please look after yourself and have fun too, it's so important especially with all you have on your plate.
Kind regards, Jo

 

[Grannie G]

Hello Sunflower

I don`t think any of us cope as well as you seem to think we do. I think we all cope as well as we can.

You should be enjoying your baby. That is why you are still on maternity leave. It`s really sad you have the additional worry and responsibility of your mother.

Do you get any outside help in caring for your mother? Have you had a carer`s assessment? Has your mother has a Social Services assessment of her needs?

I`m sure if you could get some daily help, even for a couple of hours, it would improve the quality of your life. Please refer yourself to Social Services and see what can be arranged.

 

[piedwarbler]

Dear Sunflower

I could have written your post though my stresses are different to yours, mum is in a home, I work full time, 2 kids, Mum's only carer, husband works away most of the week, try to for in visiting to check Mum is drinking and eating every day but fail. I too snap and cry and fail to sleep. I certainly do not cope 24/7 ! Some days are better than other days!

I just want to send you a HUG xx

 

[Contrary Mary]

Dear Sunflower

I too snap and cry and fail to sleep. I certainly do not cope 24/7 ! Some days are better than other days!

I just want to send you a HUG xx

Dear Sunflower

I think Pied says it all. We all have our different problems and situations. I for one do not stay on top of it all. Because you need to look after yourself as well.

Keep posting here, it is a good place to be among people who understand.

Mary
x

 

[thatwoman]

Dear Sunflower,

You are doing brilliantly to be coping with the two little ones, let alone the stress of looking after your Mum. It's so hard, and all of us struggle at times.

I agree that you should try some respite for your Mum. My Dad loves his nursing home most of the time, and is far happier than he was living at home. But we only found that out after it was forced on us after a crisis last winter So don't rule it out as a terrible failure, because for us, and for lots of families, it has been good for each and every one of us. Dad feels safe (though he has no idea he is in a home), and I sleep at night more often because I don't lie awake worrying about him.

I hope you are having a better day now. I had a 20 month gap between my first two and I found that quite challenging. Now that they're 30 and 31 it's much easier!

Love Sue xxx

 

[Heather777]

Sunflower-can I assure you that your feelings are normal!! We think we should be coping, be seen to do everything but at times it overwhelms us. I agree with the others that you need to think about emergency respite to give yourself some leeway to think about your next move. That isn't much you can do about guilt but be assured that most carers go above and beyond what should or could ever be expected of them.

Assure your husband it won't be always like this-the women he married is still there but it is just hard for you to see a light at the end of the tunnel.

You are on a steep learning curve and we all need extra support and encouragement to climb this hill!!

Heather xx

 

[Jancis]

Dear Sunflower,
You are very unlucky to have to cope with your mum's illness at such a young age with two small children. It's easier when the children are older or have flown the nest. You have had some good advice from members here and I hope you will be able to try respite care. Have you introduced your husband to TP? I always show my husband the advice I am given as even if it's not what I want to hear he often has another 'take' on the problem as a result. You are doing the right thing by seeking self-help here so try and keep up your strength and positive thinking. Sunflower is a very positive name to have chosen by the way.

 

[Meercat]

Hi Sunflower,
I agree with all of the comments people have made - you must look after your own health & emotional welfare too.

Make sure if you feel it really is all 'getting' to you, that you take the time to have a chat with your doctor/health visitor/nurse practitioner. You are doing an amazing job, juggling all those plates, but having had my children I was startled to find that after a year I had a mild case of Post-natel depression, which was easily sorted with medication.

Take care - have a bubbly bath/scream at bottom of garden (whichever suits!!!)

Meercat

 

[Sunflower10]

Thank you all so much for your kind replies. Although I have very supportive friends and extended family I truly believe that unless you are experiencing dementia in a loved one first hand only then do you really know what an emotional roller coaster it can be.

Today for me (so far) is a better day, I think I have good and bad days caring just like mum does with AZ. My main problem is that I am a bit of a control freak and this horrid disease is something I cannot control.

I had a meeting yesterday with the care agency, the social worker and an OT, to address some of the issues that we are having with mum. I feel more positive that hopefully we are all pulling in the same direction now.

Mum has been in respite a couple of times this year and is booked in for next month. It certainly helps to give us all a break and mum does seem to settle in well, although this time will be in a different home which we are thinking may one day be permenant, hopefully this will be ok too.

The care for mum is shared between myself and my two younger brothers who live with her. However as mums dementia has progressed and her personal care and incontinence have become an issue this has obviously fallen on my shoulders to deal with. We do have carers in each morning to get her up and at night and a day centre twice a week so we are getting a reasonable amount of help but it will never feel enough.

Mum did make my day yesterday, when I took her home after day centre I gave her a really big hug and said 'love you mum' and she squeezed me back, kissed me and said 'and i love you'. I wanted to stay in that embrace forever.

I hope that if mum can remember one thing above all other forgotten things it is that she is very loved.

Thank you all again, I shall definately keep posting as it certainly helps to get things off your chest with those who truly understand. x

 

[lemoncrunch]

Just to say I think you are doing fantastically. I find it hard enough without a young family to think about. You will always be questioning yourself but try not to. You don't need to. You can't win with this disease. Lots of love.

 

[Mameeskye]

Sunflower my heart goes out to you. I was in a similar position not that long ago, with Mum sliding into dementia whilst I was going through twin pregnancy and bringing up toddlers.

There is grief that she is not there to help you, when you need someone to care for you too when there are young toddlers and babies in the house. My OH was brilliant but as you say, unless you have been there you cannot imagine what it is like. My friends really didn't have a clue as their parents had not reached this.

My Health Visitor helped me in the biggest way possible. Her comment to me was "Your kids have to come first, they are the future!" So whilst it took time to reach a balance point I eventually did, though throughout there was guilt that I could not be and do all things to all people.

Mum was admitted to a NH after emergency surgery and thereafter life became a bit more normal. It was less exhausting as I was not worrying about her constantly. The boys and I would go to visit. It became my place of respite when I was exhausted.

((((((((Hugs)))))))) You are doing a fantastic job!

Love

Mameeskye

 

[Pads71]

Hello All

I don’t know what I am doing wrong but I feel as though as I am jack of all trades and master of none. I am trying so hard to be a good mum, daughter, sister, wife and the all consuming carer that I feel as though I am spread so thinly nothing is good enough.

How do you all manage to stay on top of it all? I feel as though I am struggling now and I have not returned to work yet, I am still on maternity leave and due back some time after Christmas. I find that my constant thoughts are of what needs to be done with mum. Everything seems to irritate me and the people closest to me seem to be getting the full brunt of my emotions. My husband who couldn’t be any more supportive if he tried has to put up with my constant nagging. I even find myself telling him that it is wrong when he comes home from work and starts doing the washing up, that I hadn’t got round to doing. Nothing seems to be good enough.

I thank god that I have two beautiful boys aged 5 months and 20 months who provide me with the reason to get out of bed in the morning.

I keep telling my husband that it won’t always be like this but I fear the alternative. We either have mum as she is now at home with carers and us seeing to her every need or she will be in a home or worse.

I feel as though the true cost of caring is taking its toll on my family with no end in sight. We are waiting for a place at a local home but then the guilt will take over that I couldn’t have done more and I dread that day too. Mum is 61 and has had Alzheimer’s now for approximately 7 years and I have been caring for her now on a daily basis for about 4 years. She is now unable to do most things herself without constant help and assistance.

How do you all find the time to care and cope with everything else life throws at us.

Sunflower,I understand what you feel and are going through. my mum is 60 and has dementia for 6/8 years. I also have 2 boys 3 & 12. You shouldn't feel gulity about not doing enough for your mum or thinking of a care home. I cope by thinking what would my mum want for my young family? and I'm sure your mum would want you to put your children and your husband first, they need you and there just isn't enough hours in the day to do it all, I too have tried and you need to be careful you do not make yourself ill. It's exhausting and emtionally draining for you all and I send you a big hug and best wishes as you're not alone and yo're mum would be very proud of you. xx

 

[Heather777]

Sunflower, great news that you have had that meeting. It bought tears to my eyes when I read that she said she loved you. Strange how before dementia these things are meaningless and with dementia you crave for those small things. Bless you.

It is so true that there is no understanding about dementia until you experience it-I love to read the posts here and to talk to other carers in my dads home. It makes me feel normal!!!

Hope your day is stress free today-well as stress free as your situation will allow!

Heather xx

 

[Sunflower10]

Struggling again

Morning Friends

I just feel the need to post once more as the tears roll down my face. The weeks have been ticking by and we have been continuing our care for mum up until last Thursday when she has gone into respite for a week.

I thought that with mum in respite I would feel less stressed but I don't. I am still constantly tired and now have a horrible guilty feeling as I haven't been into see her yet or phoned to check. I am worried about what I will see or hear, although she is probably fine. I am going to try and visit this afternoon.

I have been thinking about requesting a carers assessment, as I seem to be struggling emotionally to cope with it all. Is this something that I would request through mums cpn? Was also thinking about seeing the GP about my emotions.

I just wish I had my mum to hold me in her arms like she did when I was a child and tell me everything will turn out ok.

 

[sussexsue]

I think one of the saddest things here, is that in a normal situation, with 2 babies, your mum would be helping and supporting you. Sharing in all the wonderful moments that young children bring.

I have been trying to get my head around how you manage with your children and your mum, and TBH I cannot and think it is just too much. Your mum has obiously raised a wonderful loving person and your priority is to do the same for your boys.

 

[lin1]

Morning Friends

I just feel the need to post once more as the tears roll down my face. The weeks have been ticking by and we have been continuing our care for mum up until last Thursday when she has gone into respite for a week.

I thought that with mum in respite I would feel less stressed but I don't. I am still constantly tired and now have a horrible guilty feeling as I haven't been into see her yet or phoned to check. I am worried about what I will see or hear, although she is probably fine. I am going to try and visit this afternoon.

I have been thinking about requesting a carers assessment, as I seem to be struggling emotionally to cope with it all. Is this something that I would request through mums cpn? Was also thinking about seeing the GP about my emotions.

I just wish I had my mum to hold me in her arms like she did when I was a child and tell me everything will turn out ok.

I feel for you, you are going thro so so much.
You are not simply tired , you are exhausted.

You can contact social services yourself or thro cpn, gp ect and I think you should do this sooner rather than later

I know you want to do your very best by your mum , we all try to be everything to everyone,
We run ourselves into the ground , just as you have .Many here have had to make difficult choices , maybe its time for you to think about this
I know you dont want to , no one who loves and cares , wants to !!!