Hello, I am struggling.

[Carys1992]

Hi there. I'm joining the forum as my father, 74, has very recently gone into a home. He has a diagnosis of mixed dementia (vascular and Alzheimer's), but I also believe that he might have FTB because his brother had it. My dad has been unwell for a long time, I would say on a gradual decline for 20 years, but he refused any formal testing until we forced him after he starting wandering and getting very lost.

He has gone downhill in the last 2 years to the point that he is non-verbal, almost completely nocturnal, and only just about recognises myself and my sibling.

His dad, my grandfather, also died from Alzheimer's in 2000. Both he, his brother (died in 2019) and his dad have/had this behaviour where they steal food and compulsively eat sweet foods. My uncle had a formal diagnosis of FTB and I see that this can be a symptom, so that is what makes me believe that is what dad has too. We have not formally tested for this though as it required further testing - and both my sister and I already struggled to get my dad to appointments as, prior to moving into a home, my dad lived over 6 hours away.

I am 31 and a mum of two-year old twins, and I am terrified - because of the strong family background - that I am also going to develop the disease. I have seen time and again what it takes from people and it breaks my heart. I am also anxious that I have passed on those genes to my own girls.

Navigating my dad's own rapid deterioration and supporting his care is so challenging and upsetting, but also a constant reminder of what might happen to me and I'm really struggling.

 

[Louise7]

Hello @Carys1992 and welcome, but sorry to hear about your dad and also how much you are struggling at the moment. It's so hard caring for someone with dementia, and going into a home is a difficult time emotionally too, but people here understand and there is always someone here to listen. It might be helpful for you to discuss the way that you are feeling, and your anxiety about a possible genetic link to FTD, with the Dementia Helpline as they will be able to talk things through with you and suggest a way forward (contact details below):

https://www.alzheimers.org.uk/get-support/dementia-support-line

The Admiral nurses are also a good source of support too:

https://www.dementiauk.org/informat...agnosis-and-support/what-is-an-admiral-nurse/

 

[Jessie5]

I’m so sorry to hear this. I can completely relate. It is my Mum has Alzheimer’s. My Dad had Huntington’s Disease which is an inherited neurological illness a bit Iike a mix of Parkinson's and Alzheimer’s that usually hits in middle age although my Dad lived to 82! I have a 50% chance of having the gene. I have kids too. I’m in my late 40s

I cope by trying to live in the moment. Absolutely nobody knows what is around the corner. In some ways I feel genuinely blessed to have the insight into how short life is and make the most of it.

Now your Dad is in a home really try and enjoy your life and your twins. Even if it is just snuggling up and watching telly with them or going to the park. Make those memories for them that they will cherish whether or not you live a long healthy life or it is shorter than you would like.

If there are times when you can’t face visiting your Dad it is ok not to.

Do what you can to research environmental factors in dementia. Eat a healhy diet, socialize, learn a language and exercise. These things might or might not help, but will make you feel better anyway and will do no harm!

Always know there is amazing medical research going on. Who knows what treatments and cures might become available. Huntington’s Disease was hopeless 20 years ago. Now they are trialing treatments. I hope by the time my kids have to worry there will be a cure.

The older I get the less I worry which may sound weird. But I’ve had 2 friends taken by cancer at just 50 or so in the past year. So genuinely none of us really know what is around the corner.

I of course have moments of blind panic, but I’ve learned to deal with these as I’ve got older. Some counseling might help you?

Sending you a massive hug as it is all a lot to be dealing with xx

 

[GillP]

@Carys1992 , I’m so sorry to read about your father. Not all types of dementia are inherited. If you are worried that your father has FTD could the home not arrange testing? Speak with the manager. Will it make any difference? A sweet tooth is linked to many types of dementia so try not to think that must mean FTD.

Hopefully your father is safe and well looked after.

I agree with @Jessie5 ‘s sentiments about living life in the now.

Thinking of you, your Dad and your family.

 

[Violet Jane]

Compulsive eating and developing a sweet tooth are common in dementia. Damage to the appetite regulation mechanism, memory loss, loss of insight into how much s/he is eating and boredom cause people to overeat. As taste buds become less effective sweet food becomes more appealing.