Is this normal?

[Patriciapmr]

Beginning to think I'm not normal, feel like I could do with being permanently drunk to get through this, help please?!

[Hidden]

If only it were that simple! I don't think I could function if I was drunk. There is way too much work to keep up with! Now I do have a glass or two, okay sometimes three, at night. However that is still well within the functioning range. It certainly does help to relax me at the end of a long day.

Hang in there. You can do it and we all are here for you.

[Patriciapmr in reply to Hidden]

Well maybe not drunk, just a bit tipsy to numb the stress!

I feel like I'm slowly cracking up!

[Georgepa]

Perfectly normal to feel like that ! There will be better days - its all a bit of a roller coaster I am afraid

Georgepa

[Patriciapmr in reply to Georgepa]

Thank you Georgepa, wise words as always!

[jzygirl]

Some day's the wine calls me and some days i hear it and some days i don't. I never get the glass out the cupboard untill the carers get here and i have half wine half fruit juice so if the bottle is really shouting at me i can have two glasses. You will find your own level soon enough. Janexx

[NannaB]

Are you getting enough time on your own to do things you like? Is your husband still going to the Hospice and if so, are you doing fun stuff during that time? I've lost a couple of my Wednesday Mornings as the sitter injured her arm using a hedge trimmer, ouch! It has made such a difference to me. The first week was just like any other day, me and hubby and I was finding it difficult to cope but this Wednesday I invited a friend round and we had a good laugh. I feel so much better. I have two half bottles of wine in the fridge, left over from the cheese and wine evening I had recently, 8 ladies sitting on garden chairs upstairs in what used to be a bedroom. Not particularly the most comfortable way but my thoughts were, if it was hot we would be in the garden on those chairs so why not indoors. The wine is still in the fridge and I can't believe it really but getting hubby to bed is a two person job which I can't manage if I drink too much....which isn't much at all for me.

Colin doesn't say anything now so I feel I have to talk to someone else everyday so if friends or family don't pop round, I ring someone. Someone I know will cheer me up. I am a full time carer but I also want a life. One day my darling won't be with me, if I don't go first, and I don't want to find myself alone and isolated because I've forgotten how to enjoy myself. I think it also helps Colin as I tell him all the funny things that have been said, tell him what I've done when he is at the day centre or has a sitter and return kisses my friends have asked me to give him.....he likes that bit best I think. Of course there are bleak moments, lots of them but I try to even them out with fun times.

I'm looking after our 5 year old grandson this weekend. I may even sit in the paddling pool with him and get the water guns out if the weather stays warm. On second thoughts, running into Colin in a soaking wet costume may not be very sensible. Giving a 5 year old water, I'm not likely to stay very dry whatever I wear.

I hope this bleak moment passes soon and you are able to laugh about something tomorrow.

Just remembered Jill is having an on line party. Better go now and re read her post to see when it is and write it on the calendar. Jill's parties always cheer me up.

X

[abirke in reply to NannaB]

keeping that positive outlook. Looking for the joy. getting wet, playing! these are alll things we need to do to and for ourselves.

Goof Job NannaB..you cheered me up already.

Thanks

\AVB

[Patriciapmr in reply to NannaB]

NannaB you always seem to know the right advice to give us all and I thank you for that!

Keith has decided that he doesn't like going to the hospice so I don't want to distress him by insisting he goes!

I have been given some free sitting hours by our local volunteer centre and am using them most weeks to get out with my family and friends, must admit I do feel recharged after that!

His brother has also been coming over to take him out once a week which has been a great help, but all he keeps saying is "I feel really sorry for you Pat, it's too much for you and you should maybe consider full time care" which doesn't help at all really!

We also have a sitter from another hospice who comes roughly every fortnight and he takes Keith out weather permitting, I try to get out whenever I can whilst they are here!

Can't wait for Jill's online party, never been to one before but I have accepted her invitation!

Take care, love and hugs....Pat xx

[Georgepa in reply to Patriciapmr]

Be tough - I know it's hard but the hospice break is as much about you as it is about Keith .You have to tell him that you need that break and he needs to do it for you . We all get into the habit of putting ourselves second which is to be expected but there are times when you have to put yourself first - It won't kill Keith to spend some time at the hospice once a week and it may be your saving grace that allows you to keep going and survive to look after him .Sorry if I sound ruthless but I've been there and got the T shirt .Its very little to ask considering everything else you are undoubtably doing .

Love Georgepa

[Yvonneandgeorge]

Pat we all feel like this, we do some up, sometimes we forget about us, get some time for yourself, go out for coffee, buy yourself something nice, we deserve it. You said before that Keith did not want to go to the hospice, has he changed his mind?

George goes to the centre twice a week, those days fly past. Chin up Pat, things will be better in a few days, we have all been there many times, just take one day at a time I know it is hard, and it feels like there is no light at the end of the tunnel. Stick with it sending you a big hug . Yvonne xxxxxxx

[Patriciapmr in reply to Yvonneandgeorge]

Thanks Yvonne, your big hug helped me a lot, don't know what I'd do without all you lovely people, probably go completely balmy if I'm not already!....Pat xx

[Doglinton]

Perfectly normal.

I drink but never all that much but now there are times I look longingly at the bottle !

I have some every day but can't have much because of carer duties and that can make me long for more !

I agree with GeorgePa i would try to put pressure on him to go to the hospice for your needs. We all need time off, even if it means you can just sit alone in peace for a while.

Love, Jean

[Hidden]

Chris has been going to day care two days per week, 10-5, for ten weeks now and, whilst he doesn't like it, says it's boring, I have told him it's non-negotiable as I need that time to be able to keep on caring for him. He is slowly accepting this. Yesterday when he was in day care I finally managed an hour in the hammock with a book. Last night after I got him to bed I went for my first swim of the year in our pool - in the moonlight. These are signs that I am recharging my batteries and night swimming shall hopefully become regular. Having had friends staying most of the time since early March, which is a great help, we are now on our own till 1st September when my daughter moves in. When she was last here in April she was worried about my condition so I am hoping to be calmer and healthier when she returns in seven weeks' time. In the meantime we plod on.

[nomansland]

my dear Pat....you are more than normal,just think of how many people are drunk for no reason !!! this voyage justifies mostly anything...booze would be a mild one ! I remember my dr. years ago asking if I drank or did drugs and my answer was no as I would not be able to care for Madeline ,that was the thrump card ,try to get rest,any way you can,it will help,love and prayers,Rollie

[Patriciapmr]

Hi Rollie,

Thank you so much for your kind words they are very much appreciated!

How are you? I hope you are managing to come to terms with your loss of Madeline, I think about you often and worry about what the future holds for us 😔

Take care and again thank you....

Love and hugs....Pat xx

[GillJan]

Pat its perfectly normal to feel the way you do when looking after someone with PSP. I am lucky, at least for now, that my hubby is still able to get out and about with walker/stick and takes the dog for walks several times a day - I get a little breather. Malc is not happy going to places, like the hospice on his own either but am working on that one. I get stressed out making sure he eats and drinks in a safe way for himself and also when he is following instruction, he often does the opposite and I feel bad that I let that wind me up too. I know it is going to get harder and am grateful that I have a GP who keeps in contact to make sure I have all I need and she is insisting I get more than 3 hours respite a week now. I also know I have to find a way to balance what I need to doto to help Malc and the chores I feel I should also keep on top of. The problem I have is not having family to help and I find it hard to ask of others as I see this as my duty. Hope you find ways to chill out though.

[Katiebow]

Resisting the bottle is a tough one as it does seem to help to relax, trouble is have to think of the practicalities especially if they have a fall or choking fit. I am staying with my son and enjoying our little grandson in Bristol but keep having to tell Ben not to keep trying to pick him up, what a terrible thing to have to say to his grandad. Nice having a support system here but back to East Sussex on Sunday with no family of any kind within 3 hours drive. Makes me sad as easier to share with family. Hope you enjoy the odd glass or two. Kate xxx