So many changes...so many questions

[LeonieF]

Hi there,

My Dad was recently diagnosed with Alzheimer's, although as seems to be pretty common, I suspected he had it for a while. My mum passed away 3 years ago after a long battle with cancer and my Dad has not been himself since. My Dad was working up until he was forced to retire last week and I have only recently moved out of home (I am in my late 20s). There are a lot of changes happening and I am worried anymore (eg. selling the house to finance his retirement) will make him more stressed/anxious .

I was wondering if people have any advice on when I should think about moving back in with him/getting a carer. In general he can look after himself still but he does not eat properly unless I cook for him or talk him through preparing something. He also got very confused the other night, had a nap in the afternoon but woke up thinking it was the morning and got dressed and took the train to work only to discover it was closed! He was still confused about whether it was morning/evening when I went round the next evening - is this a sign that he should not be left on his own??

I feel there is an extra difficulty because it needs to be my brother and I telling him him what to do (work, driving, power of attorney etc.) and we are both quite youngish. Plus he still doesn't really accept/is unaware there is anything wrong with him. How can we get him to make the necessary adjustments without him getting defensive and not listen to us?

Ah so many questions!! I would appreciate any advice you might have - thanks!

 

[FifiMo]

Hiya and welcome to talking point.

Sorry it has taken so long for someone to respond to you. You haven't said how old your dad is when you said he was forced to retire. Is he in receipt of a works pension? You could look at what benefits he would be entitled to disability allowances for example. Also apply for a reduction in his council tax... Some councils don't charge council tax with mental health issues or at least give a discount. With regards to selling the house, in my view this would require careful consideration as sometimes a move like that can cause so many issues like confusion that the person never really settles in the new home. Perhaps you could test this by inviting your dad to stay over at yours one night and observe how he copes.

Only you can decide to move back in with your dad or not. I would perhaps sit down with your brother and discuss the options and decide how you can help your dad out between you both. It is a major commitment if you move back in and to be blunt, you are young and have a life of your own to leave and as good as your dad might be right now, he is going to deteriorate over time. If you feel you are able to give him the care and attention he needs then fine. If you have doubts then don't do it. Get social services involved and get them to provide him with a care package. It does not matter what you decide to do. There is no right or wrong answer.

If your dad is in denial about anything being wrong, this is actually quite common. I wouldn't push the issue. He has a diagnosis and that is important as it gets him access to medication if needed and to support services. Other than that there is no need for him to know. Rather than focus on the dementia, try just dealing with the day to day challenges that he has to deal with on a day to day basis. With his eating, perhaps it would help you if he had meals on wheels during the week and you maybe made a nice meal for him at the weekend. You would then know he is being checked on during the day when his meal is delivered. As to not knowing night from day, it is only going to get worse when it is dark in the mornings and in the evenings. Maybe this is something that you and/or your brother can help your dad with. You could get into the routine of phoning your dad first thing and telling him it is morning and then phone him around his bedtime to let him know it is time for him to go to sleep. There are also different things that can be put in place that would alert the telecare people (if you get this installed for about £10 per month) if your dad left the house during the night and they in turn would alert you. As you can see, these are all things that you could arrange and put in place for him.

You and your brother, if you haven't already done so, need to get your dad to sign a lasting power of attorney. If your dad deteriorates then he might not have the capacity to do this and he may not have the capacity to agree to sell his house either. If you want some information about this then let us know and we will help if we can.

Hope this helps as a starter for ten but don't hesitate to ask if you need more information.

Fiona

 

[Shash7677]

Hi and welcome to TP from me too! Nothing to add to what Fifimo has said as it's all fab advice, the only thing I can really say is about dad accepting there is anything wrong. My mum was diagnosed about 3 months after her initial referral was made, the day the referral was made we had a bit of a row and I'd said to her 'mum you have dementia' more out of anger than anything as she would see the GP, her answer 'no I haven't that's for old people!' (She was 66 at the time).

9 months after she was diagnosed she was admitted to a psychiatric unit and we were chatting whilst packing and again I broached he subject saying calmly that she had dementia, again, she replied 'no I haven't, I haven't got that' and was really quite stroppy, to be expected really when someone tells you you've got an illness such as dementia is. She never accepted her diagnosis, I don't think it really sank in to be fair. I wouldn't worry that dad hasn't accepted the diagnosis, he may never accept it as my mum didn't. Part of me wishes is never actually said anything to her in the first place. Hey ho, hindsight is a wonderful thing.

Take care, I hope you and your brother manage to get some help.

Sharon

 

[Hair Twiddler]

Hi & welcome to TP,
Fiona's "starter for ten" is spot on in my opinion - the LPA is crucial - do take courage in both hands and get this process started as soon as possible.
Your Dad may well feel defensive - dementia sometimes seems to be on a learning curve no one can truly "get to grips with". It might take a great deal of time, patience, trial and error for you to find an effective approach to helping him.
There are lots of very useful fact sheets on the AZ resources pages - do dip into them - but try not to become engrossed or overwhelmed - do log-on to TP and have a chat or ask any question you may have.
Does your brother know about TP? I hope that he too is taking a look and will join in - we are a bunch of allsorts from all over and all ages - willing to help if we can.

Take Care.
Hair Twiddler.

 

[LeonieF]

Thank you so much

Dear all,

Thank you so so much for your responses. It really is helpful and comforting to get some advice and know that the things happening to my Dad are 'normal'!

He is actually a solicitor who deals in LPA so I think that is not to difficult to organise, we have spoken about it, it is just the actual 'doing' that seems a bit daunting. He is 68 so was technically due to retire but financially he is not really in a position to do so, due to various things that happened in the past. Plus he enjoyed the work and social interaction so, I think it is pretty hard for him at the moment. I think it is time to sit down as a family and just go through everything now as it all seems to be happening so quickly. I guess I am torn between making sure he maintains his sense of independence and just taking over and organising everything for him.

One more question, the doctor my Dad has been seeing spoke about clinical trials. Do any of you have any experience of these/have any opinions on it?

It sounds like you have all learnt a lot from the experiences you have had and I really appreciate you sharing this with me and I will make sure I pass this onto my brother, he will definitely benefit from TP.

Thanks again!!

Leonie