53 yr old partner dx with ftd

[Kristiewithak]

Hi I am new hear and am really having a hard time. My partner and I have been together 28 yrs and have 2 young adult children. About 5 years ago he had a stroke and came out of it fairly well. Then 2 yrs ago he had what was said to be a manic episode, which was terrifying. I have struggled getting clear answers. They at first said bipolar but never dx in past. Then vascular dementia. He has been suicidal and inpatient in psych. I work from home and watch him every day sit and stare. He can't cook or dress himself and is pretty reliant on me. We are doing testing this week. I am exhausted. Angry. Sad.Scared and I feel soooo guilty for not being able to handle this any better. I'm assuming they will suggest inpatient care for him? I'm just at a loss and have no idea how to feel. I am 49 years old

 

[Izzy]

Welcome to the forum @Kristiewithak.

I’m so sorry to read about your husband’s condition. So young to be facing this. No wonder you are exhausted, angry and scared. I hope the assessments and testing this week bring some answers and start to give your husband some relief.

I’m glad you’ve found this forum and I know you will find support and understanding here.

 

[womblewa]

Hi Kristiewithak, there is also a very supportive FTD forum run from the US, if you google FTDsupportforum.com you can should find it. All the best.

 

[robinbird96]

Hi Kristie,

I'm really sorry to hear about your partner's diagnosis at such a young age. My mum was diagnosed at a similar age and I'm the oldest of two children. I'm a carer for my mum now in my mid twenties.

If I could give any advice at this stage, it would be to get social workers involved as soon as possible so you can possibly get a hand with his care. From the emotions you describe, it sounds like you are close to a carer breakdown. Mention this to the social services, as this will set an alarm bell ringing for them and they may be quicker to help, act, and make sure your partner gets the care he needs.

The following factsheet that Alzheimer's Society provides can help you understand how to get the ball rolling: Assessment for care and support in England. This can be found on the Alzheimer's Society website under the "Get support" tab. Unfortunately I can't send links at the moment as I haven't posted enough.

Depending on where you live, you can call them directly or get referred through your GP.

It's hard to think about these things when your loved one has just been diagnosed, but when you're ready it might be a good idea to read through the Planning Ahead booklet - also available on the Alzheimer's Society websit, on the publications page which is under the "Get support" tab.

When my mum was diagnosed, me, my dad, and brother had to become her Lasting power of attorney (for health and financial) as mum doesn't have the capacity to make decisions for herself anymore. It's good to get this done sooner rather than later as it can cause problems later on if you don't have this.

If you're struggling, it's always worth calling the Alzheimer's Society support line. They've been a big help to me and the past, and depending on where you live might even be able to arrange a visit or meeting.

Hope you're all as ok as possible despite the awful news. It is a shock to the system, especially at an age where it feels like it shouldn't be happening at all, but life will eventually get better again. You just need to make sure to ask for help because even the strongest people out there struggle to do this on their own.

Sending love x