I'm a remote carer for my dad. He's been deteriorating quite bad recently, eg. More often forgetting my mum died 5 years ago and that they were married for 55 years and not recognising the home he has lived in for last 5 years. Just now he phones me in tears and wailing that he has fallen asleep in the factory and he needs to find a bus home. He is at home and I tried to orientate him and failed. He says I don't understand and I'm messing about with him. I've hopefully convinced him to stay put until 6am before the next shift starts but not sure what to do next. I said I am too far away to pick him up and take him. 'home' but will phone him in the morning. I know about sundowning... Just welcome for any advice as currently in pieces.
Need advice please
- Thread starter Spottydog
- Start date
Oh goodness. So distressing for him, so distressing for you. I guess 'any advice' is going to relate to who else is involved to date and what support, formal or informal, is in place for him locally. Do services know about this recent deterioration? Will he engage with anyone?
I'm so sorry - this must be really hard. I don't think there's much else you can do tonight, unless you think he's at risk of an accident or wandering out of the house trying to find his way home. Would he answer the phone if you ring him at bedtime? I think entering his reality and suggesting he stays put until the next shift comes on duty was a good move.
Tomorrow morning, I think contacting his social worker and a request to the GP for review would be reasonable things to do. He's not safe by himself, and is becoming distressed by his delusions. Having had a day of it with my PWD convinced that I'm lying/mistaken/just plain wrong about something that he's been obsessing about, I do get it. Reassurance is no longer cutting it, unfortunately. The other thing I've noticed with my PWD very recently is that he is worse if he hasn't eaten. Can't think why that should be, but there's a definite pattern emerging. Do you think your father is eating properly? Could he/would he get himself something to eat if you encouraged him to do this tonight?
Thank you for replying. He has carers twice a day. The doctors know he is deteriorating and have prescribed iron and vitamins as their solution. I have messaged his carer who is visiting tomorrow morning at 10am and asked her to see how he is. He did talk of being hungry so I said go and get some bread and jam from the cupboard because the factory won't mind. I am beside myself with worrying that he will wander but his legs won't let him get far however there is woodland nearby. He spoke about sleeping in a bed outside but I said stay in the nice bed in the factory. Just feeling broken and that I have failed him.
You have absolutely not failed him. You have done your level best, but this filthy disease is catching up with him. Carers twice a day doesn't sound like enough to me, and the idea that iron and vitamins will deal with these symptoms is just shocking. I wonder whether a call to the AS helpline www.alzheimers.org.uk/about-us/contact-us would help you? Or perhaps try Dementia UK in case there's an Admiral Nurse in your area.
Thanks for replying to me. I just feel so awful right now. I will contact him tomorrow and hope he feels better but also look into the admiral nurses. This is the first time he thought he was at work and such a big shock to me as he hasn't worked since 1997 so I hoped he had escaped this part of the disease.
Sadly, as the disease progresses people with dementia seem to retreat further and further back in their lives, so it is not surprising that this has happened. From what you've said, he does need urgent review, so don't be shy about nagging social services and the GP.
Please know you’re doing the best you can. Know it’s common to have those thoughts and feelings but remind yourself you are doing the best you can. I have a few recommendations. I would always “meet your dad where he is.” For example if he talks about living with his wife that is dead. You should talk about her. Say things like oh you just reminded me I have mom’s sweater. I need to give it back to her. If you tell him she passed however many years ago he will most likely get more paranoid and not trust you because you’re crazy and making things up or he is going to mourn her loss as if it is the first time he is hearing this because right this moment it is the first time he is hearing that she passed. Your concern about his leaving is valid. I would maybe get door cameras installed or have a stop sign on the front door or other deterrents to leave. You should also inform the local police and fire that your dad has dementia and may wonder and give them his picture. You can find many products online that can “track” him for example the find my friends app on an iPhone or a tracker watch made for people with dementia or a tracking key chain if you think he will bring his keys. Have medical info card in his wallet and jacket pockets in case he wonders. To help with sun downing I would make sure he is not to hot/cold in the house, hungry, thirsty, has to go to the bathroom, that the lights are on in the house, etc. make sure he is staying awake during the day so he sleeps at night and try getting him to be active during the day so he is tired. Have the aid put on calming music before she leave and use a lavender oil diffuser. These are calming. Or Have a list of things that he needs to do before the next person comes. I can share more ideas about any of these or other topics.
Thank you all for the advice. I phoned him this morning and he was okay and knew he was at home but said he misses my mum so much. I have asked his carer to assess him when she goes to visit. His doctor is not very proactive but I will let him know this latest development and also message social services. I am trying so hard to keep him out of residential care but I don't feel increasing his number of care visits will help. I looked for key trackers but can't find anything that would work with my android and I can't do a watch tracker as he has a special watch for low vision. He has numbers and his address in his wallet and the police are aware of his condition. My husband will try and install a ring doorbell at Easter. Between carer visits he is on his own, he does like to take short walks from his front door and I don't want to discourage that as that is his only chance of human interaction and it does brighten him up. I hope with the brighter weather coming he will perk up but I know it's a long shot.
Hello @Spottydog This must have been so distressing for you especially as a remote carer. I know that you would prefer for your dad not to be in residential care but i am wondering if it would be a good idea to find a care home near where you live, that way your dad would have company, you would he able to visit him on a regular basis and he would be safe.
Yes I know it's coming to that and I need to get my head out of the sand. I hate this cruel disease.
Yes, it is such a cruel disease and so hard to watch our loved ones being changed by it.
Maybe it's time just to look at some care homes in your area just to see what is available and what you think of them so that if you have to make a decision in a hurry you have some background knowledge. Not easy i know.
Similar threads
