Monday 14 September 2020

Slippery slope

I know I'm sliding towards depression which is why I made an appointment see a counsellor.

After my appointment I realised that she couldn't help, I know what I need but unfortunately it isn't available. I'm only one of thousands of people in the same position.

One of the things the counsellor asked me to do was say the first three words that popped into my head about my childhood. I couldn't think of three, when I did say that one of my most abiding memories of my childhood was being cold. She immediately leapt to the conclusion that I meant emotionally cold. No, it was the 1950's in Lincolnshire, it was fecking freezing, ice on the inside of the windows, a coal fire in the back room and an outside toilet.  We didn't have much money and my mum was young and had very few housewifely skills. The wind blew straight across the fens, my dad always swore the wind came straight from Siberia.

 I realise the counsellor is running a business but I don't think spending £50 a week for 12 weeks to sit in her shed and sob would achieve anything.

I have noticed I'm losing my marbles or to be more accurate my cognitive ability is failing. I cannot retain information as I used to. This could be caused by isolation but equally could be caused by stress. I find Steve's constant fretting and micro management stressful. For example I made lamb casserole for tea tonight. I used the leftovers from the Sunday roast. I like my casseroles cooked low and slow, but every two or three minutes Steve kept saying that it was burning or would dry out. He cannot cook but seems to think I can't either. He cannot relax and so everything, every day has to be obsessed over in forensic detail.

I don't think the anonymous comment about counting my blessings was meant to be helpful.  I assumed it was just another piece of self satisfied twaddle

Steve had a visitor yesterday which was nice for him, they sat on the back deck discussing fishing, motorbike racing and why the satellite has stopped working.

I cannot expect any help from my children, DS1 lives and works in London, DS2 works shifts, DD1 now has six children, two of her own and four fostered, this means endless meetings with social services and picking up the slack when they don't deliver. DD2 is now a single mum of four, she works in a school with 80% BAME, they have covid in the school.

I miss baking for stroke club, I enjoy making cakes but Steve doesn't eat cake.

I miss sewing by hand, I may be able to use my sewing machine over the winter if we stay in one place for a while.

Staying in one place won't help my social life as the things I used to do have been closed down.


Anonymous said...

I don't mean to be unkind but maybe it would be best to go to Plan B, you have mentioned the idea of getting a retirement flat ? Wouldn't it just be easier to be tucked up somewhere without the constant hassle of having to move berths/walk back for miles in the cold/rain/sleet to collect your, being able to cook more easily, watch TV if you wanted to and not being in such close quarters with your DH. You are more than thoughtful of him and he can't help the way he acts really if a lot of it is down to the stroke.

The boat was a cracking idea, but health probs re DH have changed a LOT of things. You simply sound drained and there really do seem to be more negatives than positives in the daily grind of being on the boat.

I am a carer so do have some idea of what you go through and I think you do amazingly well . Deborah

Amanda said...

Baby, you got enough on your back to break down a draft horse. And now with all the Covid shut-downs, you've lost the pressure releases you had. To make matters worse, while you're looking out for everybody and their brother, nobody is really looking out for you. When you get this constantly stressed out - and slap on your hearing problems to boot - of course you're going to have a hard time remembering things. I simply do not know how you do it, esp. in such small confines as a narrowboat. I'd have jumped into the river long ago. Anon's comments about a retirement flat bear consideration, and you've got to ask for some help from the kids. Something has to give here, and the way things are going, it could be your own body. Then where will the rest of the family be?

justjill said...

Think it is time you get the family together and tell them what you are going through. You cannot carry on anymore Hester without some help. Reach out NOW. Please. xxx

Jennifer said...

Dear Hester. I am a long time reader but have not commented before. Anon, Amanda and Jill have said it all. You are a truly amazing woman but you do it all alone with no support. Since no one seems to be in a position to help you then something else will have to change to allow you some relief from the stress and isolation. You are not losing your marbles, you are simply overwhelmed and overloaded and your poor mind/brain is telling you it cannot cope with the ever increasing burden any longer. Sometimes circumstances change to the extent that we have to change our plans to accommodate the new reality. Love and best wishes.

Margaret Butterworth said...

Hope these help:

My post to a Camino Carers Group:
I’ve just been re-reading many of the posts in this group. How the world has changed since we started it! I am thinking a lot about Rebekah’s analogy about putting on the oxygen mask in a plane on yourself first - as opposed to the notion that “I signed up for this and I’ll keep my promise”.
My partner John, aged 95, had a fall 3 months ago and broke his hip. Recovery has been painfully slow. I have tried my best to do everything possible to help him, but I’ve concluded that it’s just too hard. We are applying for residential aged care now. I am getting a lot of criticism. This is made worse by the fact that the vast majority of Covid deaths in Australia have been in Aged Care Homes (though in the West we are more or less Covid free).
I DO feel guilty about it all, but I also know that I don’t have the patience or the love to go on being a Carer long term. I think being unable to plan a Camino this year has added to my woes.

One helpful reply:
Oh, Margaret, I know just what you are going through. The advice is so obvious — ignore the judgments. But it is so hard to follow!

I think it is just human nature to have judgments, but we ought to have the compassion and self-awareness to know when giving others our judgments if not a helpful or kind thing to do. So, I think these people should keep their opinions to themselves. And secondly, I think that people‘s judgments are often so totally biased and unaware of the realities of being a caregiver, that “walking in your shoes” would be a huge benefit to them.

The bottom line, IMO, is that you are really the only one who can decide what is best for you and for John. Two different sides of the same coin, perhaps, but I think you are the only one who has the full perspective needed to make the decision.

I hope not to ramble on too long here, but your dilemma reminds me of when I learned that judgments are just wrong in this situation. This was years before my husband was diagnosed. I had a very very close friend who at age 50 developed early onset. After 8 or 9 years of keeping her at home, her husband decided to put her in a residential facility. Some of the other good friends jumped in with the judgment against it, but I, feeling so “enlightened,” said that of course this was Bill’s decision and who were we to judge.

Then about a year later, when my friend had had no recognizable moments of cognition for months, Bill told me that he was seeing someone, that he had started a romantic relationship with a woman from his old workplace. I never said anything (so at least I followed my own advice about not voicing judgments), but deep inside, I was judging and I was critical. Fast forward four years, where I have joined a support group for women whose partners have dementia. I have learned that there is a big difference between, on the one hand, deciding whether I would ever feel that doing what Bill did is right FOR ME and, on the other hand, judging Bill for doing what he obviously felt was right for him. In our group, there are some women who have started a relationship while their spouse was alive and others who haven’t. When we talk about this topic, it just takes one woman to give her explanation of why it was the right thing for her to do for the others to realize that we are simply in no position to judge. It has been a very valuable lesson for me, and to bring it back to your situation, what I hope it has done for me is to give me the confidence and courage to know that when I have to make whatever decisions I have to make about Joe’s care, I will make the best decision for us. And the naysayers be damned!!!!! I hope that you can reach that point, too, Margaret. I don’t know if you have a support group at home, but I feel like it has thrown me a life preserver. Hopefully, we can be your virtual support group.

Lynda said...

You help SO MANY PEOPLE....I think it’s time you speak to your family and ask for help.
I’m so sorry you’re going through this. I don’t know you, but have been following you for ages and you have more than enough on your plate..I wish I was near!
I can’t offer any solutions, but I’m an email away...

Catriona said...

You are not losing your cognitive facilities-your brain is just too full to cope. Hearing loss is such an isolating factor too in how you feel. I can’t be of any practical use to you just now, but I did notice how much more relaxed you sounded when you were in the lovely Air B and B last week. As many others have suggested, is it time to come ashore?

lindsey said...

I was outraged by the comment about counting our blessings. If only life were that easy. I don’t know what your GP arrangements are but would suggest that it is time for you to make a visit to him/her and to be completely honest. It appears that you cannot go on as you are so time to ask for help. Best wishes and good luck to you xxx

Joan (Devon) said...

Blogland has a listening ear, but apart from advice we are unable to help practically. It's time you told your family how you are coping/feeling, because I think you air brush YOUR problems away when they ask you how you are, so they never know.

kate steeper said...

vent to us chuck i know we are bugger all physical help but we are here

Pat said...

Hello Hester, I've not been commenting because I just simply hadn't any extra resources to spend time on myself. I don't know if you remember my previous comments about being a full time carer? Full on 24 hours a day. An update - I got to rock bottom, totally overwhelmed, my health, not good in the first place, suffered, and it ended up where I had a sort of breakdown. I just didn't have the physical or mental resources to carry on. Lack of sleep (up 4 or 5 times EVERY night until I was sleep deprived and teetering on the edge.
I contacted the local authority Adult Care Services (something I always said I wouldn't do) and I've had good help and advice. Because I'd got to rock bottom and carers coming in 4 times a day wasn't the solution (how to cope for the other hours and sleep was desperately needed?) A short term placement was arranged, I was very unhappy but had no option as I'd hit the bottom. We're some weeks on now and after care needs assessments for him the short term care has been made permanent. It was the hardest decision I've made in my life and it still hurts very much. The most helpful thing I was told - this isn't only about his situation it's about yours too, if you can't cope then he needs someone else to take that off you in order for you to recover. I expected and wanted to have him home again but deep down I knew I'd just return to the same situation very quickly, I'm elderly myself and not in the best of health.
I can't imagine ever feeling at ease with the situation now, I miss him so much and can't get over the feeling that I've failed him. Yet he's being well looked after in a place of my choice. The Covid situation has made things more difficult but that's something that I can't do anything about. I'm able to see and talk to him socially distanced which I'm very thankful for. It's all felt unbearable and I still weep every day but then that's only to be expected after over 50 years of never being apart.
I hadn't intended to ramble on like this but just wanted to tell you of my experience, what I can say is when you feel you've hit the bottom, or indeed before that, get help. The Adult Care services helped so much, please ring them for advice. It doesn't mean you've committed to doing anything but you will get advice, help and support if you choose to take it.
You're not alone Hester, there are so many of us out here despairing. I hope that in time I'll feel better (better? not sure that's the right word) about our situation but I also hope you take that step of picking up the phone and ringing them as I did.
I'm in the North West of England but there are Adult Care services in all local authorities. Please ask for their help. I wish you well.

Eleanor said...

Agree with Lindsey, it's time to visit your GP and be totally honest about how you are feeling. You mention missing hand sewing, have you thought about doing some patchwork? Nothing nicer than a hexagon quilt. It's so easy to pick up when you have a few minutes spare time. Be kind to yourself, good luck.

Margie from Toronto said...

So sorry that you are so exhausted - you do sound completely drained and that is worrying for all of us who follow you.
I can't help but echo the comment of one of your other readers and ask if it isn't time to perhaps find a small flat somewhere - even a rental for a year or so until at least Covid is over.
You wouldn't have the physical strain of constant movement and you might be able to access more assistance and at least have the opportunity to develop some community for yourself.
Short of that - is there any marina for over the winter that might offer a bit more chance to meet up with others - although I know Covid restrictions will limit these opportunities even having a neighbour to chat to might help.
Please take care.

Sewing mamie said...

Does it make any difference where you live , I live in a house with a large garden , my husband only has three topics of conversation boats , the garden , and the state of the world it would not be any different where we lived . We have no friends and no social life , since this pandemic he is paranoid about going anywher , I don't want to get covid but i don't want to live in a bubble . I think we all have to cope in our own way , I cope by reading and telling him to shut up when it gets too much for me . You could try a different counsellor they all have a different approach , visit your gp and get some anti depressant prescribed . But you are not alone at this difficult time we are all trying to cope the best we can .

flis said...

I think it's stress that's making you a bit forgetful.I have a very difficult person in my life and to survive I have keep my distance.No reasoning or love can solve it.Eventually I decided that I have to scarper as quickly as I can with an"oh must dash off " or "what's that" or" I'm desperate for the loo".If my health is being affected by stress I have to just avoid to survive x

Beacee said...

As Kate says, vent to us. I can't offer any practical help, unless you want a phone number and a listening ear. So just sending a hug as always. x

Laura P said...

Hester - I've followed you for years but never commented. I admire you so much. You really are a marvel for managing all you have. It must be so hard with your hearing difficulties making life so much more challenging. That alone must be so isolating. I too think its time to land on your GP's doorstep. I know from my own experience that they do not do anything to help and ignore it until its slapped in their face! You have too much to cope with at the moment, soldiering on is not an option anymore. Its not a question of pulling on the big girls pants, you've been doing that for too long. They must be under your armpits now! I am worried for you and really hope that things can be moved forward for you to tackle some of the issues and make life bearable again. With much love, Laura x

Margaret Butterworth said...

For me, the last straw was when I realised everybody was asking "How's John?" and nobody asked "How are YOU?

Tracy said...

My personal experience is that carers are seen as people who push others around in a wheelchair. If you care for someone with hidden disabilities people don't recognise you as such, nor do they understand the huge mental strain that constantly making decisions for someone else (from the mundane to the life-changing) places on you. While you are forced to prioritise what they want/need all the time, your own wants/needs remain unmet. I care for a family member full-time. I am lucky in that it is not my husband and I know that he has always got my back, but Covid has bought into sharp focus that our wider family have no comprehension of our way of life, nor why we have to make the choices we do. You seem to be at a point where something has got to change and I would suggest, along with a lot of the other posters, that you seriously consider a settled way of life, at least temporarily, which would let you rest, think and plan the right way forward for both of you.

Debdor said...

You cant get any help for yourself. You need to go to your Doctor and say that you cant cope with your partner any more, you feel you may do him harm - then they will have to act on his behalf and get him a social worker, who may by helping him, help you... My Mum had to do it with my Dad. She rang me one morning to say if she didn't get any help that day, she was going to pack bags and leave him outside. I rang her Doctor, and hey presto help, for Dad, not Mum...

UK robin said...

Dear Hester, I’ve followed your journey for several years without commenting, but today your post spoke straight to my heart.

My husband had early onset dementia and died 5 years ago after 10 years of slow decline. I had to continue working, for health care reasons, and care for him as best I could. I had to do it alone as my surviving son lives in Hawaii, the rest of my family is in the UK and well, being British, I had the ‘ get on with it’ genes. That worked until one day I was driving home from work and wondered what it would happen if I didn’t stop at the traffic lights and didn’t survive the crash. I had no idea where that thought came from, but it scared me.

It was time for me to admit that I’d come to the end of my mental, emotional and physical capabilities in my wish to keep Don at home where I knew he wanted to be. The stress on the caregiver body is crippling and takes a long time to heal. I had to admit that I was not able to be 24 hour caregiver, bread winner, wife and friend all at the same time. Of course I wasn’t. Don went into a care home for the last 2 months of his life and I was able to be there as often as I possibly could. Don was physically safe, well cared for and I was able to be his wife again. For the first time in years I was able to get a full night’s sleep.

I support you in any decisions you make. Please remember that it’s a good thing to put on your own life jacket first.
Love to you x

PS I found the UK dementia online support group helpful

Please consider

JanF said...

Dear Hester, I hope some of these well meant and loving comments help you feel supported even though none of us is near enough to help you. I am in a rather similar situation and very worried about our future. Covid and now (for us) the smoke do not help.
I do wish you well and hope we will soon hear some happier news from you.

Theresa Y said...

Hester...I'm praying for you. I hope you can feel the love coming from across the pond. I don't have words or suggestions for you. But I can tell by your words you are just bone tired physically, mentally and spiritually. Once you sit and sort things out you have some hard decisions to make for you and DH's health and well being. Again my thoughts and prayers are with you. hang on....


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