Hello from Ernest

[Ernest]

I've joined today after a friend advised me to !
My husband and I have been together 30 years. He had a serious brain injury 12 years ago and our lives changed dramatically. We have rubbed along pretty well however even though I have fitted my life around him. I've been able to keep working, part time and seeing friends. He isn't very sociable and has always been rather controlling. Two weeks ago he suffered a fall resulting in him going to hospital which he hated. Last November I told him that my elder sister and I were planning on visiting my brother, who lives in Florida,. I felt that if I didn't do it now I may never do it. My husband was not interested in coming. Since then he has become more and more forgetful and often confused. He had refused to see his Doctor, so in a way, the fall and subsequent hospital stay has brought things forward. He apparently is suffering from frontal temporal lobe dementia. I'm feeling guilty that I may have brought this on but also feel that I need to have a life too! I think times are going to get quite hard and am very grateful for the friends I have who keep me going. However I believe that talking with people who are in a similar situation may be another source of comfort. I just hope I don't get too carried away with any posts I make !!!! I'm 65 and not particularly techno savvy

 

[LadyA]

Welcome, @Ernest . Firstly, there's nothing you could possibly have done to have brought on your husband's illness! I know there are others on Talking Point also dealing with this particular type of dementia, so I'm sure you will find plenty of support here. When you are ready, maybe you would like to start a thread of your own, in the "I have a partner with dementia" section https://forum.alzheimers.org.uk/forums/i-have-a-partner-with-dementia.69/. Just click the blue button to start a new thread, give your message a heading and type your message in the box. When you're finished, click the "create thread" (or "submit thread") button.

 

[Amethyst59]

Hello, @Ernest! I’m so glad your friend advised you to join, you will find that there are many here in your situation and when someone here says, ‘I know how you feel’, they really do. I hope you still manage to make your trip to Florida, even though your husband has had a fall. Keep posting and let us know what happens.

 

[Ernest]

Thank you. Its really good to know others appreciate how one is feeling. Unfortunately my husband was admitted to hospital today as he has an UTI as well as a mobility issue. At least I'll get my first good nights sleep in a week, tonight!!!

 

[Amy in the US]

Hello and welcome to Talking Point. I hope you find support and help here. It's been a real lifesaver for me.

I am sorry to hear your husband has had to be admitted to hospital. Nobody ever wants to be in hospital! However, if the silver lining is that he gets the assessments he needs, then that may be a good outcome. Please don't hesitate to speak up for assistance that you and he both need, such as an OT assessment of the home for safety, a care package, and so on.

(From anecdotal evidence here on TP, I wonder if it may be possible the that UTI was brewing and caused his fall. Again, no hard data on this, but it seems to be a common theme. An infection of any sort can definitely upset your equilibrium.)

Not to be blunt or upset you, but unless you deliberately whacked your husband on the head, or pushed him down the stairs, how can you possibly blame yourself for causing his TBI or fall? As carers, we have enough to be getting on with, without adding to our burden by blaming ourselves or feeling guilty. I know it's easy to say and very hard to do, but please do try to be kind to yourself and to let go of the guilt.

I hope he gets good care and that you can get some rest. Sleep deprivation is a very real problem for carers, and don't underestimate the effects it can have on your health.

 

[love.dad.but..]

I am sorry that your husband has needed hospital admission and at least it will give you a chance to have a proper rest. There is nothing that you will have done to cause a change...the dementia is on its own relentless path regardless or even in spite of anything we carers try to do. I hope the next few days see your OH more comfortable

 

[canary]

Hello @Ernest
Your story mirrors mine. My OH had a brain injury many years ago and now he has FTD. I was told by his neurologist that if you have a brain injury then you are 30% more likely to go on to develop some sort of dementia. It is not your fault.

Im sorry your husband is in hospital - UTIs can have a very profound affect on people with dementia

 

[nae sporran]

Welcome to TP Ernest. It was UTIs which led to my OH having a seizure and that led to a care package being set up. I hope you won't have the stress of providing extra care by way of lunch time visits while your husband is in hospitals, and that you can enjoy the wee bit of better sleep.