Wandering/options

[Pandalove7]

Hello,
My dad aged 60 has frontotempal dementia. I am only 18 and we live with my mother as well. Me and her are struggling to cope at the moment with her working full time and I am also working to save up for university which I should be attending in September. My dads issues are worsening, he has little quality of life and spends most his week days wandering around, sometimes walking 10 miles a day with no supervision crossing busy roads, or spending his time in bed. He also has an issue with boundries as will often wander into peoples gardens and even houses which obviously causes an issue. He is fine on the weekends mainly as we can take him out and keep him engaged. However, we can’t afford to get him a full time career for the week and we won’t be given anything due to the amount of savings he has. We have even considered care homes but he’s so young. He cannot cope with social interactions. I’m also considering deferring my university start till next year so I can care for him for a year but I’d still need to work. I just feel he has no quality of life and it’s such a risk with him wandering around everywhere. I avoid going out and hate going to work Incase he’s out somewhere tress-passing. Any advice or similar situations would be appreciated. Thank you

 

[northumbrian_k]

Hi @Pandalove7 and welcome to Dementia Talking Point our supportive and friendly community. I am sorry to hear about your dad's condition and the pressure that it is putting on you and your mother. There are some hard decisions to be made and this might be helped by a needs assessment and development of a care plan for now and the future. Whilst his needs are important, don't sacrifice your own life chances and future by giving up on university. I am sure that other members who have been in a similar position will be able to give you the benefit of their experience. Do keep posting to ask questions or to let off steam. You'll find a lot of empathy and support here.

 

[Izzy]

Welcome to the forum @Pandalove7.

Il so sorry to hear about your dad. He’s so young too. It must be so hard for you all.

I agree that you shouldn’t sacrifice your opportunities to become your dad’s carer. If he hasn’t already had an assessment of needs then he should have one. If he already has a care manager then his needs can be reviewed. He is vulnerable and a package of care could be considered.

I’m glad you’ve found the forum. Your mum might also find it helpful.

 

[Pandalove7]

Welcome to the forum @Pandalove7.

Il so sorry to hear about your dad. He’s so young too. It must be so hard for you all.

I agree that you shouldn’t sacrifice your opportunities to become your dad’s carer. If he hasn’t already had an assessment of needs then he should have one. If he already has a care manager then his needs can be reviewed. He is vulnerable and a package of care could be considered.

I’m glad you’ve found the forum. Your mum might also find it helpful.

Hi,
Thank you, he hasn’t had an assessment of needs, I think mum is trying to organise it. He now has his PIP payment so hoping we can put some of that towards his care. I’m just hoping we can find a solution as can’t carry on like this at the moment.

 

[Izzy]

Hi,
Thank you, he hasn’t had an assessment of needs, I think mum is trying to organise it. He now has his PIP payment so hoping we can put some of that towards his care. I’m just hoping we can find a solution as can’t carry on like this at the moment.

Good. I’m glad your mum has things in hand. I wondered if this might help -

Assessment for care and support in England

What are care assessments and how can people with dementia and their carers access them? This information is for care and support in England.

www.alzheimers.org.uk

 

[silkiest]

Hi @Pandalove7 , I'm so sorry to hear about your difficult situation.
Your local council maybe able to supply trackers as an add on to the care phone system. Ours did one that was incorporated into a gentleman's type watch. Maybe something like that would be useful to start using now before he starts having problems finding his way home. You will then have some peace of mind that you will be able to find him if he goes missing.

 

[Pandalove7]

Hi @Pandalove7 , I'm so sorry to hear about your difficult situation.
Your local council maybe able to supply trackers as an add on to the care phone system. Ours did one that was incorporated into a gentleman's type watch. Maybe something like that would be useful to start using now before he starts having problems finding his way home. You will then have some peace of mind that you will be able to find him if he goes missing.

Thank you, I track him using find my iPhone but this only works when he takes his phone. However, when me and my mum are both at work we can’t keep an eye on where he is or go collect him so I’m thinking we need somebody to come and accompany him.

 

[silkiest]

Thank you, I track him using find my iPhone but this only works when he takes his phone. However, when me and my mum are both at work we can’t keep an eye on where he is or go collect him so I’m thinking we need somebody to come and accompany him.

MIL's tracker is on her keys which she always takes out. It can be set with a perimeter so we get notified if she goes out of what we think is a 'safe area' - would a setting like that be helpful - you may need to check where he is less often.
Unfortunately if you want someone to accompany him it may not work unless the person is full time - MIL can go out in the morning but by the afternoon has forgotten and wants to be out again.

 

[update2020]

Dear @Pandalove7 Hi! I agree with all the above. I was in an identical position to your Mum - working full time and with two teenage children doing their GCSEs and A levels when my husband had dementia. He too was a great wanderer.

I never wanted my children to put his care before their education and careers. I’m so happy they got on with their lives.

I had lasting Power of Attorney and used his PIP to employ carers. It is cheaper to employ carers directly, than via an agency. I did use a not-for-profit agency to do the legal paperwork and calculate payroll. This was MUCH cheaper and meant I could recruit suitable long term companions (who were also better paid than agency carers). Agency carers are very expensive but a lot of the money goes to the agency not the carers. I used all his PIP to do this, and then used my income to run the household. We managed like this for around 5 years. I did eventually go part time at work and about two years after that I placed him in a care home (using his savings to pay).

I’m not saying you should do exactly the same but there are definitely solutions that don’t depend on you giving up University. xxxxx