Stress of caring for individual with CTE

[Qazplm12345]

My husband has been diagnosed with probable CTE. We are seeing the memory issues, the behavioral deregulation. I just am not coping well right now, nothing I do for him is good enough. I know it's not something he can control, but I need to learn some coping strategies. Compunding this is I have depression and anxiety. I need help.

[sassy59]

Hello Qazplm12345, welcome to the forum. I can only imagine the difficulties you are facing and my heart goes out to you. Do you have any help and support at all? If not, you certainly should as you can’t do this alone.

I know that covid seems to have taken over everything but your husbands condition needs managing. I have no idea what is available in the United States but I truly hope you get the help you so badly need for your husband and yourself.

Take care xxxx

[Hidden]

Hi Qazplm12345, and welcome to our community. I don't know anything much about CTE and had to look it up, so I can't offer any specific help with that, but I can offer a safe space here for you to come and interact with us when you are feeling stressed and unable to cope.

Caring of any kind is one of the toughest jobs in the world. It is stress-inducing, and quite often gets little recognition and usually no reward. But there is a strong group of people within this forum with a vast knowledge of the sort of things you may be going through, so feel very welcome and comfortable to come and share whatever it is you are feeling.

I see that sassy59 has already given her welcome to you too.

As she points out, things medical and in caring can be very different in the US to the UK. We have some members also from US, so maybe one of those will be able to point you in the right direction for help to help yourself as well as your husband. Definitely the sorts of problem you will come up against are the same in caring, wherever you happen to be in the world. So please don't feel alone. We are here for you.

[Hellebelle]

Hi Qazplm12345, I was so sorry to read about your experiences. I don't have any experience of CTE but my father had a condition called MSA and this was a progressive brain disorder that effected his personality and made him very unpleasant and verbally aggressive towards my mum. She was often in tears and we had to have help for them both as mum couldn't manage on her own. With many dementia conditions, the person goes through phases and this phase did not last long to be replaced with a much calmer, accepting phase.

I am not sure what is possible in America and what services you can access. We eventually had the support of the local hospice and their palliative care team who were a tremendous support. In this country there are also dementia advisers and also mental health teams who can help give you strategies and advise on medication that might help manage the behaviour.

I hope you are able to access some support as it is a very difficult thing to manage on your own.

[Hidden in reply to Hellebelle]

Hi Hellebelle, thanks for your excellent input. There's nothing like a few words from someone who has actually had a similar experience, and I hope it will help Qazplm12345.