My partner's personality has changed a lot

[simplychrista]

My partner had a stroke (left ischemic stroke) about two weeks ago now. He had headaches for almost a decade, always around one eye and I couldn’t get him to see a doctor. Then, about two weeks ago, he began to lose words, and he slept a lot. The fatigue was getting worse and so did his speech. He went in to his GP on the 4th of June, and they sent him straight to the hospital for an MRI. And from that moment, he was admitted.

We have lived together for 22 years, but we are not married, and that has proven to be very difficult now because of the rules at NHS. But lately, during the past five days, he’s been very upset and he believe that I have left him. We are both on Universal Credit and have a joint claim, and he’s been interfering with that while I’ve tried to make sure that we don’t lose our home and our benefits.

I called the hospital yesterday morning, because I’m drowning in texts from him and I caught a stomach bug so I didn’t want to visit. And his nurse hadn’t noticed any changes at all, except that he had been very sad the evening before and had problem with sleep. He had told the staff that I had abandoned him, and they believed that. They don’t seem to understand the side-effects of a stroke like this at all. At least not the psychological effects, which is worrying. He has ended up in an emotional loop that is impossible to break. I understand what’s going on in his brain at the moment, so it’s not a lack of knowledge from my end. But not being able to reason with someone that you know so well, is frustrating. And dealing with health professionals who you’d think would know these things, is not easy.

I’m aware of that fear can be a trigger for this sort of thing, but it seems that the ward is not even aware of that if they get involved and try to convince him that I’m still there for him, he will turn against them. He already done that with his sister. I told her what was happening, and she called him and tried to reason with him. So now he calls her a liar.

His nurse made a note about this in his file, and his consultant would be informed this morning. They have a psychiatrist at the ward twice per week, so while I think his doctor has prescribed something to calm him down, it will end up with the psychiatrist on Wednesday when he arrives.

But it has caused such a mess with Jobcentre since he keep logging in and making claims that are not true. He told them that I had destroyed his fit note, when he had it himself. So Jobcentre has involved Social Services because of this, so now I don’t even know if I will be able to pay our rent in four days time as usual. Or any other bills.

Any advice would be welcome. I’m so tired, and I took the day off yesterday, Sunday, to get some rest and to get my stomach back in order. I turned off my phone and simply went to bed. Last night, when I turned it back on again, I had 54 texts from him. Rambles about nothing and everything. And in the end, his texts turned offensive, threatened me with police to have me thrown out of our home. He did the same thing in a message to Jobcentre.

I don’t know what to do about this anymore. I don’t want to leave him, because I’m hoping that he will recover and that this will calm down after some time. I know it’s not him saying all these things, but it’s still very draining.

[Rups]

Personality shifts are common post stroke, I had my own which were prickly and short fused. I didn’t have the means to address them for at least three years as I was so consumed with rehabilitating physical conditions, I brushed aside my pathological, psychological needs. Over time, I started incorporating Mindfullness and CBT, but what really helped me was using DBT (Dialectic Behavioural Therapy) but I did it on my own using Marsha M. Linehan’s extensive handout and worksheet book, weekly practice for about two years and I still use it to this day, alongside therapy.

I don’t think there is a quick fix to your predicament but you can set boundaries on how you involve yourself emotionally with his language. Both of you will have to balance acceptance and change without gaslighting or browbeating, and that may come through trial and error to find out what works for you both.

Lean on the forum to get specific guidance and advice and talk things out in your mind with the help of our members who are brilliantly diverse and always willing to pitch in.

[Anna_Moderator]

Hi @simplychrista

Welcome to the community, I’m sorry to hear about your partners stroke. The situation you’re going through sounds really tough.

Personality changes after a stroke are very common, we have some information on this which you might find helpful to have a read of. You may also find it helpful to give our Stroke Support Helpline:0303 3033 100 they will be able to listen and maybe offer some advice on how best to manage this situation.

I hope being on this community will also help. If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

[simplychrista]

Hi @Rups

I’ve meditated for the past four decades, and I plan to try and help him with mindfulness once this has calmed down a bit. I understand that he won’t be able to silence his mind enough to learn how to meditate, but mindfulness can still help him physically as well as emotionally.

And they are sending him home today. They don’t think that he is confused or emotional because of the stroke, but that he has separation anxiety. So they want to see if it gets better if he is home. I don’t mind having him home, but I’m also worried that he might get another stroke in a near future. He still have a clot that they can’t do anything about, which is blocking part of his brain right now.

But I do understand that I won’t be able to reason with him if it is this lack of blood to parts of his brain that is causing this. His doctor said that he doesn’t have any ability for rational processing at the moment, so he ends up in emotional loops. I just wasn’t prepared for that he would believe that I had left him just because he couldn’t be around me every day. That is new. And he also showed sign of jealousy, which doesn’t exist otherwise.

I talked to the staff nurse today, and we discussed this a bit. I noticed that it all started when he began to have difficulties to complete things that he otherwise would do without any problems. Like filling out a form, for example. And obviously, fear plays a part too.

For my sake, I won’t have any issues to handle him emotionally since my own baseline is being very calm, and also since I know what is going on now. So I will sit down with him once he settled back in and have a talk to him about this. I think he needs a lot of reassurance right now.

He’s a senior programmer as well, so he normally sees the world from a rational viewpoint, and this is all but. And I think that is distressing in itself.

I will look into DBT and find out if that might be something for him. Then I will see what his discharge letter says. If he will have any additional therapy. His right side is weak, but not paralyzed. And he lost his peripheral vision on his right eye. So he will see both his Orthoptist and have an optical imagining in four weeks from now. But other than that, I don’t know what’s planned yet.

Thank you for your reply

[simplychrista]

Hi Anna,

I’ve seen this before, both how an old friend’s personality changed after a massive stroke, and also my dad. My dad had three strokes within a couple of days less than a week before he retired. And he never recovered entirely. And the fear was roughly the same for him as what my partner is experiencing right now. But, different people and different changes, of course since not two people are the same.

Thank you for the information. I will take a look

Christa

[Mrs5K]

Hi @simplychrista & welcome to the community. What a difficult situation you’re having to deal with. I suspect a lot of the behaviours are caused by tye stroke but that doesn’t make it any easier to deal with.

Could you call the universal credit people & explain about his stroke & the effects it is having. I don’t know but maybe they can stop his access short-term or at least annotate the file to ensure they triple check anything he tells them.

Hopefully when he is home the separation anxiety will reduce & things will start to return to more normal levels if not, don’t leave it too long before seeking some help.

Best wishes

Ann

[Rups]

@simplychrista

And he also showed sign of jealousy, which doesn’t exist otherwise.

I

Aye, Othello Syndrome, if you type that into the forum search bar, you will find other carers experiencing similar things, jealousy is also a useful search term on the forum.

[ManjiB]

@simplychrista - welcome to the community. Having read your post, I feel you are handling this extremely well and I think once you speak with the JobCentre and Social Services things will be sorted out. I’d be surprised is they would not be understanding of the situation and also I expect this is not the first time they may have come across something like this. That does not necessarily mean there may not be some obstacles that you may have to overcome given the nature of your relationship (I am no expert, but you mentioned difficulties with the NHS because you are not married to your partner but have lived together for 22 years).

All previous respondents to your post have given excellent information and advice, and I can add no more to that. As I said, to me you come across as someone who is very level headed and in control of the situation and so well done on that front as I feel this will get you through the days ahead.

Once your partner is home, hopefully things will settle and you will both be able to work on getting yourselves back on track for the rest of lives.

Stay strong!

Namaste|

[simplychrista]

Hi @Mrs5K

Thank you for your kind words. I’m sure I’m not the only one, and while that might not be a positive thing, at least it means that there are others who will understand. It’s really difficult when hospital staff think that you have left a partner behind.

And I have been in touch with Jobcentre the entire time, almost daily, so they have followed the progress and how it simply derailed after some time. I’ve requested full control over our joint account since I don’t know if this might happen again. And the staff nurse told me that the first three months are always critical. So in case he has another stroke and this will get worse, that will be one less thing to worry about.

And yes, I hope that his anxiety will settle down. He’s been easier to communicate with today, but he doesn’t seem to recognise his own texts that he sent me as late as yesterday. So he does have issues with his memory as well.

And I will make sure we get help if things doesn’t work out

Christa

[simplychrista]

He did say earlier today that he didn’t quite recognise who he is anymore. That was during a moment of clarity. Must be frightening.

[simplychrista]

Hi @ManjiB

It takes a lot to push me over the edge, so I’m just tired right now. But you are correct, I’m more rational than emotional, and that is a blessing in moments like this.

Social Services was not much help, unless you count the links she promised to send me via email for support. Not sure those links will be of any more help than I can get here, but we’ll see. She was mostly interested in what I needed, and I don’t really need anything that I don’t already have. I’m not sure why Jobcentre insisted in getting them involved to begin with, but I guess they have their rules and regulations. My job coach mentioned that it was to make sure that we got the payments we needed, but Social Services said nothing about that. They might assess that later, I don’t know.

Either way, I’m looking forward to get him back home again. It’s been a strange couple of weeks.

Thank you for your kind words.

Christa

[ManjiB]

@simplychrista

Social Services was not much help,

Hi @simplychrista - Your comment about social services does not surprise me at all and you may ask why I suggested you speak with them. It’s because I had hoped against hope you may get a better experience than most on this forum when it comes to dealing with Social Services.

We had a terrible experience with them, but they were involved from the start due to Mum’s condition and they were part of the discharge process even though we didn’t know it at the time.

So having established they were useless (my words not yours) for you as well, at least we can move on from that and work with what we’ve got. But just be aware they may get involved and if they do, it’s best to know how they work.

Wrt Social Services, we do have a member on this forum who has been helpful as he himself survived a stroke and now works as a social worker. I will name tag him here and if you feel you might benefit from Social Services, David (@DavidHearnden ) will be more than happy to help. That said, I haven’t seen him on here for a while, but he does normally respond when name tagged or you can even send him a private message via the private messaging service.

I hope things get sorted soon and you can carry on with life as best as you can.

[simplychrista]

Hi @ManjiB

It does seem that the information is more enthusiastic than what you get in reality when it comes to Social Services. But that’s not unique around here. It’s the same in a lot of countries.

Thank you for tagging David. And thank you for your kind words

[DavidHearnden]

Good morning, Christa - I can imagine the last few weeks have been a real strain for you. I may be wrong but it’s likely the job centre contacted Social Services because it did not know how best to deal with the personal, emotional, relational issues you were having to deal with, not to say Social Services would have been able to do so. It was a way of moving you on. On the other hand, they may have had safeguarding concerns for you and your partner.

Has any psychological / counselling support been organised for your partner on discharge? If not, speak to his GP. It’s likely to be sometime before things settle down for him.

Don’t know how practical it will be but you need planned breaks, time to yourself. If there are Stroke Association, Different Strokes and / or Headway groups local to you they may offer meet ups, activity sessions, outreach support you might be able to access.

Do you think your partner is going to need support other than from yourself going forward?

Let me know if you think I might be able to help.

Take care - David

[simplychrista]

Good afternoon, David.

Thank you for writing back. The only support so far has been Early Supported Discharge Service. They came over this morning. It was a stroke nurse, a physio therapist and they also had a student with them. The nurse and I discussed his medication, and she also took his blood pressure. The physio therapist was helping him with certain exercises, we talked and then they left. I have phone numbers to them if he would need anything or if anything would change for the worse.

They will be back on Monday again. But that’s the only kind of support that we had. I read through his discharge letter last night, and no other support has been issued by the hospital. And apparently I’ve become a nurse, without being fully aware of that. He was sent home after 11 days, and yes…everyone seems to move you on and hand it over to others.

As for myself, I do terrible in group settings. I’m an introvert and I’m hard of hearing, so group settings are not for me. I do best one-on-one. I think that in terms of support for myself it would be more useful to get someone who could help out with practical things instead. I’m in the middle of menopause, and my GP refuses to give me any HTR because we have breast cancer in the family. This means that while my mood is stable, my body is changing a lot. My hips are extremely painful, so doing anything here at home that requires a lot of physical work, that takes a long time. I’ve also got a UTI since almost two years back that they can’t seem to help me get rid of. Menopause has brought on allergies for antibiotics, so it’s been very difficult to treat. I’m due for another fit note on the 22/6, which I need to sort out.

It’s a lot to handle at the moment, and I think that my partner will need more help than I can give. He can’t shower on his own, because he lacks the balance and is afraid to fall. So he’s washing off and using the sink at the moment. He’s got no other problem with bathroom visits other than that though.

He was also diagnosed with diabetes type 2, but came home with tablets and no diet restrictions. And I’m not sure if “don’t use too much sugar or salt in your food” really counts as diet guidelines when it comes to diabetes. And type 2 is a chronic condition, so not exactly something you can hope will go away on its own. It needs monitoring and a changed diet.

In other words, yes, he will need support that I can’t provide at the moment since I don’t have enough information, but also not enough physical strength to handle.

Thank you for reading this, and I appreciate your time.

Christa

[Mrs5K]

@simplychrista I see you mention in your last post that your partner can’t shower alone because of his balance issues etc. I wonder whether you should request an occupational therapy visit to the house as they can advise on any aids & adaptations that might be required to help your partner be a little bit more independent. for example a shower chair where he can sit in the shower sounds like it would be a really useful aid for you both. Grab rails may also be extremely useful as they can help you get in and out of the shower and also to hold on to whilst you in there. There are many aida out there & this is where an OT assessment comes in really useful.

[Dexster]

I am a T2 diabetic, and controlling by diet alone, which is very straightforward. It’s rotten that you have had no advice, but there is plenty of information out here in the real world on diet control, and some good info from the late, great, Dr. Michael Mosely so if you check it out, you won’t feel so alone. I am not a medical person, but will do my best to answer any questions.

[Zazzy]

@simplychrista Bless you, I’m so sorry that you’re going through this. Esp re the UC. The CAB have an advice/support line re UC that might be able to help. Since my strokes people keep telling me to ‘lower my voice’ (which I find really irritating), … apparently having a stroke can do this. sending you positive thoughts

[bob.isle]

Hi Christa,

I completely agree with Mrs5K; after discharge my local authority sent out an Ocvcupational Therapist (OT) to survey my home and she recommended a wetroom, which meant an adaptation to my bathroom and installation of a shower chair, which is fixed to the wall but drops down by the shower. VERY USEFUL, because it has arm rests and I can sit down to shower.

Best of luck,

Bob Isle

[DavidHearnden]

The Early Supported Discharge service as they have probably said is a time-limited service, usually 4-6 weeks of therapy and support, funded by the NHS. During that time an assessment of your partner’s ongoing need for support and therapy will be made, reflecting the damage the stroke has done, how it has affected him and the potential for him to benefit from further rehabilitation.

If you feel comfortable doing so, let me know which local authority area you live in and I’ll look and see what services are available you might benefit from.

Take care - David