Carer nearing the beginning of the end.

Hello All,

This is my first time seeking help anywhere out of our family unit. I don't believe our situation is anywhere as bad as others - in fact we've come a hugely long way. I just can't seem to get us past the next (hopefully last) bit.

Background:
Been together 18 odd years, married since 2013. She has a daughter from a previous marriage. We have bought her up together, she is 19 and great. Has a job, drives my car, lovely BF. No worries there.

We have a lovely house and garden, new cars, can afford nice food - money is no issue. Both have jobs, mine full time. Hers is part time 3 days per week doing work she generally enjoys. We have a nice old dog.

The source of the depression:
Fortunately for "us" this is easy... my wife has Cerebral Palsy, it only affects her legs so if she's sitting down and you walked into a room you wouldn't have a clue until she stood up and attempted to walk.

The walking part she used to be able to do no problem. However one of her hips gave out and she needed it replaced. She also has arthritis in the ankle. This has reduced her mobility and left her in varying levels of physical pain. This loss of independence couple with the pain drove her down a dark hole in 2014. There are some only contributing factors to her depression which I will elaborate on. (deafness, recurring sinus pain, occasional bad PMT)

She's in a lot better place than she used to be and I have had to learn how to help her mental health. These days, she suffers from bouts of depression, constant anxiety about certain things with potential to have full blown panic attacks (I really tried to avoid these though as they are so draining on the whole family).

She has normal interaction with people outside of the family, but sometimes won't accept visitors.

These days she’s a glass half full, cynic (she didn't use to be). She’ll sometimes assume things are going to go wrong even to the point of fully irrational views. (this is when she’s having a bout of depression).

During these moments she’ll let the smallest thing hold her back or let it prevent her from doing something. Although this is because of the anxiety, she’ll just invent reasons she can’t do something.

Another facet to her depression is her “regression on progress”. I don’t know how else to describe this except with some examples. Take her deafness, which causes problems as she can’t hear what me and my daughter are saying and struggles in group conversations. We went and got hearing aids from the NHS. She tried them out and was amazed at how much she could hear, wore them on the way home and for a few days afterwards. Now she won’t wear them, says she hates them. (But wears them if she has to go into the office). She won’t try different ones or get her current ones adjusted. Another example is: she used to be able to swim 50 lengths (this is since her 2014 op). Now says she’d drown if she got in a 25m pool and can only swim in a 12m pool. If I said shall we go swimming she'd say no. She would use Covid-19 as the reason at the moment.

She thinks everyone cares that she uses a wheelchair or mobility scooter. Therefore she doesn’t want to do stuff. No one cares, it’s in her head and I don’t seem to be able help her move away from this mode of thinking.

When she doesn't want to do something she puts false barriers / reasons in the way. For example she can go and get in her car and drive somewhere. She will tell me she can't, she's not driven for months now.

We’ll go away to hotels etc and walk round the local cities and do touristy things. Doesn't want to go to our local town. (we live in one of the Oxbridge cities) she will cite some reason, the latest is Covid-19.

I used to be scared to ask her certain things because of the screaming reactions I would get, the tears, the panic attacks. I've learnt to become less scared as she's got better.

I’ve noticed that unless she’s made the suggestion to do something, she generally won’t go along with an idea I’ve had. This is about 80% of the time, this is a more recent trait of the last 12 months. She's become really stubborn about some stuff.

She still loves going to the garden centre.

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She’s actually a popular person, she has some good friends who she has a massive laugh with, we get on with our surrounding neighbours really well and are often round each other's houses on a weekly basis. She’s funny and witty and tells a really good yarn.

My daughter has noticed that she can do more stuff (physically) when I’m not around to help her. Sometimes I have to work away and she manages better. Now I’m at home a lot more due to lock down, I wonder if it’s not actually good for her. It’s possibly allowing her to wallow. There is potential for me to go into the office.

My wife is the type of person to turn inward and not talk about a problem, she goes quiet and if you ask what’s wrong you don’t get a response. When she is riding high and more talkative about her issues she will say things like “I’ve never felt so disabled”, “I hate everything”, “I’m jealous of everyone”, “I’m angry at everyone”. She has had suicidal thoughts in the past.

She won’t go and seek professional help. She's not on any medication and she has strong reactions to drugs, I wouldn't actually want her to take anything. When she does have a bout of depression or anxiety she has a huge flood of cortisol. As she can't exercise this off she has to sleep it off, so it takes her out for about 24hrs.

When she is depressed she often takes it out on me, I’ll sometimes cry in private or in front of her. She does apologise later and does it again. I've lost count the amount of times this has happened.

My main reason for reaching out for help is that we seem to be on a general downward trend and we’re about to hit winter which I know is always worse mood-wise for her than summer - I’m slightly dreading it. See loves sitting in the sun on our decking and watching nature. The other reason is that I’m beginning to question my own happiness and if it’s all worth it. Part of me loves part of her still.

I would really like her to go and seek some professional help for her depression / anxiety. But I have no idea how to get her to. If I talk to her about it at the right time it will start an argument ergo there seems to be no right time. I sometimes feel that she does want to become like Mrs Haversham in Great Expectations.

As I mentioned she more independent when I'm not around as she has to get on with it. I sometimes wonder if I should just leave...

I’ve lived this for 6 years now, it robbed our teenage daughter of her mother in those tender growing-up years.

Hello, nice to meet you. I am no expert but I did want to reply.

First let me tell you that no one here compares themselfs to others. We all experience things different so there is no way to know who has it worse and who does not. Its not a race. But we do want to be there for each other and help in what way we can. Not proffesional but never the less.

I am sorry to hear what you and your family are going through. One thing I have learned from experience myself is that we can not make people do something they dont want to do. Be that therapy or anything else for that matter.

But maybe there are other things you could do? Instead of bringing up seeing help try to make her and yourself smile again. Find some joy in the small things. Ask her what would make her happy. I can understand how you might feel if its still worth it. Thats why I feel joy and doing something together that you both like will help.
It would be a shame if you both were to get more bitter with each other.

If what I wrote is not helping at all please disregard it. I was trying to think out aloud.

Hi and welcome. I see a lot that you say that I can identify with - but as your wife. I have degenerative and chronic illness and I "get" so much of how she must be feeling. It really, really sucks when you can't do what you used to. I've had a huge decline in my mobility - and yes I've put off seeing people because I'm embarrassed or ashamed at using the mobility aids I've needed for a long time now.... It does make you question things, makes you want to shout and scream, feel angry that it's happening to you etc etc etc

However, that being said she does have to get some help. Counselling might be what is needed or medication, but that's not up to me to decide - I'm not a qualified medical professional... But you may not be helping doing everything for her - I have a mantra "use it before you lose it" which forces me to do stuff I can at the time. Will she listen to your daughter? Could she help persuade her - or could you call her GP and tell them how things really are and see if they could do a "wellness call" or something similar and see if they can steer the conversation in the right way?

Quote:

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Originally Posted by Mira

Hello, nice to meet you. I am no expert but I did want to reply.

First let me tell you that no one here compares themselfs to others. We all experience things different so there is no way to know who has it worse and who does not. Its not a race. But we do want to be there for each other and help in what way we can. Not proffesional but never the less.

I am sorry to hear what you and your family are going through. One thing I have learned from experience myself is that we can not make people do something they dont want to do. Be that therapy or anything else for that matter.

But maybe there are other things you could do? Instead of bringing up seeing help try to make her and yourself smile again. Find some joy in the small things. Ask her what would make her happy. I can understand how you might feel if its still worth it. Thats why I feel joy and doing something together that you both like will help.
It would be a shame if you both were to get more bitter with each other.

If what I wrote is not helping at all please disregard it. I was trying to think out aloud.

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Hi thanks for your reply. I probably put my point across badly in my opening paragraph. I should have said, "I believe we're on a journey and I hope we're nearing the end of that journey". I have to believe this will all get better (to a point) one day that it won't rule our lives.

Yes I quite agree you can't get someone to do something they don't want to do. However, I honestly believe people can be motivated to do something one way or another. Now, that's not supposed to sound sinister. But I have got my wife to do things again that she once previously refused to do. All I have to do is answer the question - What would make her sit there and say to herself "I'm going to go and talk to someone and take it seriously".

Ask her what would make her happy - I would never ask that as the response would be "for my legs to work again" and the mood would darken. I know what makes her happy, but ultimately they're all sticky plasters over the real problem. she also has a self destructive nature is so far that if you told her she couldn't hand write anything again shed suddenly want to send hundreds of hand written letters.

Please keep it coming. :)

Hi and welcome. I’m another one who can identify with your wife. I’m disabled with multiple health issues, and I struggle with significant mental health issues - which are under control at the moment but can start from something as simple as starting a new medication for something unrelated to MH.

My husband is also working from home at the moment and it’s become very easy for both of us to let him do a lot more for me and around the house. It’s quicker, involves less pain for me and he likes looking after me. And I get that covid has made it easier to make excuses why not to do things - I still haven’t been to the supermarket, or even picked up my own meds, as I’m really anxious about that. In fact, my only trips out of the house in the last month have been to the hospital.

But you’re right, this isn’t healthy for your wife, or for you and your daughter. And it sounds like she needs help that you can’t provide - from her GP or a mental health professional. Is she still in pain with her hip and ankle and, if so, (and I know this sounds weird) is it worse when she’s particularly struggling with her mental health? That’s something I’ve noticed happens a lot to me. Does your GP surgery offer something like a wellness check with the practice nurse? Perhaps that would be a gentle way to encourage her to start talking, especially if you contact the surgery in advance to let them know your particular concerns.

Also, what sort of support do you have? Caring from someone with multiple health conditions is hard physically and mentally. Maybe you could think about accessing support?

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Originally Posted by Suzi

Hi and welcome. I see a lot that you say that I can identify with - but as your wife. I have degenerative and chronic illness and I "get" so much of how she must be feeling. It really, really sucks when you can't do what you used to. I've had a huge decline in my mobility - and yes I've put off seeing people because I'm embarrassed or ashamed at using the mobility aids I've needed for a long time now.... It does make you question things, makes you want to shout and scream, feel angry that it's happening to you etc etc etc

However, that being said she does have to get some help. Counselling might be what is needed or medication, but that's not up to me to decide - I'm not a qualified medical professional... But you may not be helping doing everything for her - I have a mantra "use it before you lose it" which forces me to do stuff I can at the time. Will she listen to your daughter? Could she help persuade her - or could you call her GP and tell them how things really are and see if they could do a "wellness call" or something similar and see if they can steer the conversation in the right way?

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Hi, thanks for the reply. I like the "use it before you lose it" mantra. I think I will steal that if I may.

I agree - doing all that I do for her might be actually be counter productive. she has said sometimes that I moither (smother) her. I do this to show my love, because she does like to be doted upon, but then can push away.

She might listen to our daughter, but my daughter can also get fiery and keep pressing until everything descends into a fight. I feel she's a bit too immature still to handle this kind of thing.

I could call the GP, so long as they didn't mention that I have been in contact that might work as I assume they would contact her on her mobile and it's very unlikely she would tell me that they had called.

I also have trouble putting myself in ashamed embarrassed position you describe. I'm very extrovert and nothing phases me. Do you have moments when you've done a particular activity a few times and then just suddenly can't face it again? Can you put a finger on why this is?

Thanks, please keep the responses coming.

Quote:

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Originally Posted by Paula

Hi and welcome. I’m another one who can identify with your wife. I’m disabled with multiple health issues, and I struggle with significant mental health issues - which are under control at the moment but can start from something as simple as starting a new medication for something unrelated to MH.

My husband is also working from home at the moment and it’s become very easy for both of us to let him do a lot more for me and around the house. It’s quicker, involves less pain for me and he likes looking after me. And I get that covid has made it easier to make excuses why not to do things - I still haven’t been to the supermarket, or even picked up my own meds, as I’m really anxious about that. In fact, my only trips out of the house in the last month have been to the hospital.

But you’re right, this isn’t healthy for your wife, or for you and your daughter. And it sounds like she needs help that you can’t provide - from her GP or a mental health professional. Is she still in pain with her hip and ankle and, if so, (and I know this sounds weird) is it worse when she’s particularly struggling with her mental health? That’s something I’ve noticed happens a lot to me. Does your GP surgery offer something like a wellness check with the practice nurse? Perhaps that would be a gentle way to encourage her to start talking, especially if you contact the surgery in advance to let them know your particular concerns.

Also, what sort of support do you have? Caring from someone with multiple health conditions is hard physically and mentally. Maybe you could think about accessing support?

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Hi, thanks for the post and welcome,

You sound just like us! Although my wife has managed trips out. We've been away twice - one of those as a family and we've also been out and about doing other things.

Yes - I agree she needs help that between myself and my daughter we simply can't provide. She's in some pain with the hip and ankle but this is manageable. This is what is confusing, she can't walk independently anymore, but can walk holding onto me and with her (sparkly) stick in her right hand. She can also walk using her walker. Her preferred method is to hold onto me if in public meeting people we know. If we're elsewhere in the country she doesn't care.

Yes, I would say to a point her pain is a little worse when she's struggling with her mental health but not hugely.

It's looking like the GP is the next port of call.

I have no "community" support. With regard to the physical side I'm fine. But it is hard mentally, hence why I'm on here :)
She would hate the idea of anyone coming into our home to help. Most of the day she needs no physical intervention from myself. One thing she would love to have is a cleaner again as this aspect of the house would just be taken care of. However she's put covid in the way again. Despite me saying we'll stipulate they have to wear a mask and of course they are using cleaning products so it's unlikely they will spread the virus via surface contact.
I have very supportive neighbours. In fact that has been a huge factor in her recovery I would say. It means she's got a lot of stealth contact time over the years.

You may steal it ;) Although I might charge copywrite ;)

I haven't met up with any of my friends from secondary school since I had to use sticks, then a rollator walker (he's called Wally and is amazing, my husband then built me one to go off road - her name is Eva and she can help me to paddle in the sea, go out through woods etc) and now I'm on crutches as I messed up my knee before Christmas and it's just not healing...
Has she thought of joining any online support groups? I'm part of a couple of awesome ones.
Also, I've found owning my disabilities helps me. I'm now not so embarrassed, although I'm always apprehensive about meeting people from my past as I'm very far from the Suzi they knew 30 years ago or so... New people I find easier - what you see is what you get - although I have lots of cognitive issues too now which are frustrating as hell. I'm an extrovert too, my husband has clinical depression, anxiety, social phobia and paranoia - he's had full on panic attacks where ambulances have been called etc. The best thing that ever happened to him was a change in medication and a psychotherapist who was fabulous.

Have you talked about her getting some kind of help? Some of her symptoms might be exacerbated by something simple like a vitamin D deficiency.. Could you use something like that to talk to her?

Ah, the one risk I did insist was worth it was getting my cleaner back after lockdown, I couldn’t manage without her- more mentally than anything else

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Originally Posted by Suzi

You may steal it ;) Although I might charge copywrite ;)

I haven't met up with any of my friends from secondary school since I had to use sticks, then a rollator walker (he's called Wally and is amazing, my husband then built me one to go off road - her name is Eva and she can help me to paddle in the sea, go out through woods etc) and now I'm on crutches as I messed up my knee before Christmas and it's just not healing...
Has she thought of joining any online support groups? I'm part of a couple of awesome ones.
Also, I've found owning my disabilities helps me. I'm now not so embarrassed, although I'm always apprehensive about meeting people from my past as I'm very far from the Suzi they knew 30 years ago or so... New people I find easier - what you see is what you get - although I have lots of cognitive issues too now which are frustrating as hell. I'm an extrovert too, my husband has clinical depression, anxiety, social phobia and paranoia - he's had full on panic attacks where ambulances have been called etc. The best thing that ever happened to him was a change in medication and a psychotherapist who was fabulous.

Have you talked about her getting some kind of help? Some of her symptoms might be exacerbated by something simple like a vitamin D deficiency.. Could you use something like that to talk to her?

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Hi Suzi,

Sorry to hear about your knee - hopefully you can find a way to make it come good. Sorry to also hear about your husband.

Your response is great because it brings up another area that is a problem.

No, she's never joined an online support group and has never even looked for one as far as I know. She hates the idea of anything like that, she feels "she's not one of you". There is an amount of denial going on. For example when we fly somewhere she hates that all the disabled people are put together before or during the flight. Other people can take this kind of thing in her stride, she cannot and it eats away at her. It would be great to have details of the ones you are part of. Not sure if you can list them here or if you can private message me. She has said many times that she takes things really personally, recognising the problem is half the battle!

I can't talk to her about getting some sort of help - this is the main problem. I think I need to arrange something with the GP etc as people are suggesting. She's outside in the garden all the time in summer and has only just stopped going outside regularly in the last 7 days. she must be coked up to the eyeballs on vitamin D. We have a really good diet and she's an excellent cook. This is one of the few areas that she still has confidence in.

Thanks for the words, keep em' coming.

Actually one of the best is a facebook group for a particular brand of leggings which are bright, colourful and fabulous. I wear their active range as it holds my knees, hips, back in a much better place than without them ;) This is the support group and it's full of runners, those who want to run, those who are gym members, those who aren't, it's just a wonderful group of people who just are able to be there for each other! https://www.facebook.com/groups/lucylocketlovesclub

The mentality of accepting that you have a disability is not easy.... But it can help. What about things like meditation? Tai Chi? Mindfulness?