New to this - need help and advice please

Discussion in 'Welcome and how to use Dementia Talking Point' started by Chip14, Nov 20, 2019.

  1. Chip14

    Chip14 New member

    Nov 18, 2019
    this is my first post on here so please bear with me.

    My partners father has just very recently had the memory clinic tests and has been told he needs a scan as the tests indicate some form of dementia.

    Given that his father lives alone, I am looking for advice as to what help is available for him and when to start asking for it? Everything I have read so far says the earlier the better, but some guidance on who to ask and at what stage would be so helpful.

    Thank you in advance
  2. Wildflowerlady

    Wildflowerlady Registered User

    Sep 30, 2019
    I am fairly new to the forum too and its all a bit daunting at first but the forum is so full of information and support you are not alone :). So in my dads case he had the tests you speak of and a formal diagnosis of mixed dementia was given I believe from my memory this was in early 2018, dad is now 85 years old. Dad was also given the medication Donepezil by his GP on the recommendation of the memory clinic how well it works I don't really know. My dad also lives alone following the passing of mum in 2016 we had become aware he had some memory issues just prior to that. It was however a crisis in the summer of 2017 that prompted my sister and I arranging care for dad. Both my sister and I live pretty close to dad and we started popping into dad daily after our mother died. We were taking care of dads washing as he had no idea how to use the machine and generally helping with walking his dog making sure they were both eating etc. Dads dog unfortunately needed an emergency operation on his back a few months after mum passed it took a long time to recover from and he didn't walk again for 5 months our dad couldn't cope and needed our support even more as the only other option was his dog to be put to sleep which given he hadn't long lost mum we didn't want to do. Dad was still driving but I gently persuaded him to give up on the basis he drove so little after mum died just a weekly shop sometimes less, his car battery was always going flat and I had to call upon a friendly neighbour or rescue services to get it going again. I said I would happily take him shopping and it would save him paying lots of money on Insurance and Car Tax. Dad is very tight where money is concerned is even worse now. My sister who doesn't drive related to me that dad had stopped at traffic lights one day when he took her shopping and it took him four changes of the lights to get going :eek: she didn't feel safe so I said to her that he was now a danger on the road not only to them but to everyone else. If you were to ask dad today he would still think he could drive. Dad was having a well known company delivering microwavable meals that could be heated up from frozen and at that time he was managing to do them although he did report a couple were still cold but we realised it was him struggling on the odd occasion with heating them up he just threw the cold meal out so we started to heat them up for him.
    So to the eventual crisis my sister arrived one day around noon to find dad was in his bath no water naked and in a delirious state we can't be sure exactly how long he had been there for. Panic ensued I actually arrived a few minutes after her to find her in tears dad in a state and dog had pooed in the house. It sounds hilarious now but I rushed into the kitchen only to slip on the floor as sister had just wiped up the dog mess. I fell flat on my face how I didn't knock my teeth was a miracle as my chin clipped the floor. It did prompt my sister to laugh saying we both now needed the emergency service's. We couldn't get dad out of the bath as he appeared to be in some discomfort if we tried to lift him but eventually during the very long wait he started to giggle about it all. We had to call a ambulance which took 7 HOURS to come to us as dad wasn't bleeding or being sick it wasn't classed as urgent. In the meantime we made dad as comfortable as possible pillows blankets gave him tea and sandwiches etc. We eventually left the hospital around 2am leaving dad in their care he had absolutely no idea he was in hospital telling the doctor he was in his lounge with his daughters but in fact was the A&E cubicle. Following a stay of a few days in hospital due to a UTI and low kidney function arrangements were made by Adult Social Care before dad was discharged for dad to have what was called Re-ablement this was carers coming in. The service was designed to last for a maximum of 6 weeks to see how dad coped at home. Unfortunately dad had to have a permanent catheter fitted before leaving hospital as he had become incontinent there were signs of that before hospital as in he was wearing/requesting more Tena pants when shopping. Toileting issues does appear to be a common problem with dementia it starts off small but becomes a big problem later on although most don't have a catheter fitted dad had prostrate issues too.. During the Re-ablement service it was clear dad couldn't cope with the catheter as in emptying it and we had lots of wet socks slippers etc as he wasn't using the valve to empty correctly kept forgetting to close it and had no idea how to attach his night bag. Whilst in hospital we had told the nurses/staff dad would definitely need some help at home now as we could not be at his home 24/7 it was them that called someone in to speak with us at the hospital during one of our visits. I assume this was actually Social Services person, we stressed that dad was to have care at home given the crisis of finding him in the bath and we weren't confident of him being alone as we could only spend so much time with him. We asked for the maximum amount of visits per day saying we would help dad when we could but putting the emphasis on them providing care to keep him safe. Following the 6 weeks Re-ablement service dad was allotted carers four times a day. Dads dementia has progressed somewhat it is now two years further on and he is now doubly incontinent he doesn't do anything for himself but still lives at home. Dad can no longer operate Sky Box so we had it cancelled ages ago he will pick a TV channel and won't change channel all day missing programmes I know he would enjoy. Dad was dialing numbers at random times middle of the night etc so we took all but our phone numbers out. Dads carers help wash and dress him he has refused to have a bath or shower since his hospital visit. Carers do dads lunch and visit in the afternoon to provide a drink and snack and then again at 9pm to help into Pjs and put him to bed. My sister does dad a breakfast as he wants a full cooked breakfast something we started but maybe shouldn't have it has become a demand from him. Carers time is 45 minutes in the morning most of which is taken up by cleaning him as he is always soiled other calls are 30 minutes. We still help dad a lot but I had to stop my morning visits back in June this year as my partner has Parkinson's and heart issues so I visit dad later in the day around 5 days per week. So in answer to your question I suppose care is needed when it becomes obvious that they cannot cope with normal daily stuff or family cannot or don't want to assist. My dad doesn't own any property as he lives in a Council house so his care is provided by Adult Social Services to which he pays a contribution it is based on his savings which are just above the amount in which he becomes liable to contribute it stays at a fairly stable amount. Dad is in receipt of Attendance Allowance he doesn't have to have someone living with him to receive it but it does help to pay for some things like his meals etc. Attendance Allowance is not means tested so perhaps you could help partners father apply for it if he meets the criteria he will receive it and it can be used for anything he needs help with a cleaner or gardener ready meals it up to him how its used. I'm not too sure how much Adult Social Care help to provide carers if someone has a substantial amount of savings/property it might be care has to be arranged on a private basis but I could be wrong or it could be they do provide carers but the FULL cost of the service is met by the person needing the help. Basically the more money/savings someone has the more options for care? I'm sure someone will be able to advise if they know how it works better than but I guess you could ring Adult Social Care when you feel the time is right or make some enquiries now. As you will see from my post sorry its so long dementia does progress quite a bit and some help will be needed eventually. When help is needed might be based on how much time is available for the family to help the PWD or how much help the PWD actually needs until it progresses further. I will say that the more help we gave dad the more he will expect of us the PWD does become rather selfish although they can't help it. If your partners dad is able to afford carers coming in it will be less of a emotional drain on everyone as it can get pretty tough. My dad can get a bit aggressive now not only with family but carers too how much longer he will be be able to live at home I don't know. To be honest I think dad would be better in a Care Home now but it will probably take another crisis or his behavior until the Local Authority will consider that as its so much cheaper for them to keep dad in his own home with carers coming in. I will also say dementia will effect everyone involved around the PWD my sister and I hadn't spoken in over 20 years prior to mums death but having coped initially together to help dad and genuinely feeling we had re-established a relationship it has broken down again. The main reason for this is due to my not going into dad in the morning leaving her with doing his breakfast and walking the dog although carers could do dad a breakfast of sorts. I am sad about that but again from what I read its not unusual for family to fall out big time a lot to do with care or lack of from individual members. I feel I do the best I can given my own partners health issues and his age 77 years. I wish you well in the journey you now face its tough can take its toll on your own health and well being as people say remember to be kind to yourself too.
  3. Flavelle

    Flavelle Registered User

    Jun 20, 2017
    Hahaha.....I have such a dark humour which I know many who visit TP share! Wildflower lady commented: ‘I actually arrived a few minutes after her to find her in tears dad in a state and dog had pooed in the house. It sounds hilarious now but I rushed into the kitchen only to slip on the floor...’. Thank you! Brilliant ability to recognise how funny a potentially tragic situation can be! I reckon there’s a gem of wisdom in this:
    Hold onto your humour everyone and dump any pointless guilt!
    God the situations I have been in with one or other Oldie on the floor demanding picking up. Bonkers....and we had a 5 hour wait for an ambulance when my, then 93 year old mother finally became too much for me to scoop up & get back into bed, both of them demanding I pick her up. Saw the light then and realised I should never have done that alone in the first place. Picture that though- I am 5 foot 2 and mum is (or was) 5 8 and Dad 5 10. A bit Monty top it all when she was finally admitted to A&E (though an ambulance call had been logged & then cancelled the day before) we ran through endless safeguarding questions.
    1. explain the bruises under her shoulders: ‘I was helping lift her from a chair.’ 2. Why is there a bruise on her chest? ‘ she had a spasm and lurched forward while being lifted so I had to clasp my hands tight to stop her falling. 3. Why is there a bruise on her left leg above the ankle? ‘ Her foot started sliding out so I stood on my left leg while holding her and used my right foot to scoop her leg back underneath her. 4. why are there bruises on her hip. ‘Because she was on the bedroom floor spasming while we waited 5 hours for the ambulance. Aargh, but kind of funny in retrospect! Both are back home again...need a bubble wrap suit. Hohoho it’s nearly the festive season. Sustaining giggles to you
  4. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    Hi Chip, and welcome to Talk Partners,
    Lots of people advise you to get Lasting Power of Attorney, if you haven't already, so you can help with sorting finance// welfare issues. You can download and fill in from the government website, rather than have the expense of a solicitor. If you contact Social Services they will do a needs assessment for your partners father , which may open the door for day care, carers at home ( depending on savings/ income this may be funded by Local Authority , or his father may contribute). It all depends on his needs as to the number of visits carers will do, helping with personal care, shopping, heating up meals etc. As people deteriorate their needs increase. My mum was able to stay at home by herself, with family and carer support for 2 years before she recently moved into a home. Keep posting whenever you need help.
  5. annielou

    annielou Registered User

    Sep 27, 2019
    My mum has just had her memory tests and CT scan over last few weeks and her diagnosis on Monday where she was diagnosed with Alzheimers.
    When memory nurse came out to see mum to do tests she suggested we contact local social services online to ask for care assessment. She said we didn't need to wait for diagnosis to start care process. She also offered an Occupational therapist from memory team to come out and see if mum struggled doing things around home and could suggest anything to help.
    Social worker came and did care assessment which offered mum 4 weeks respite care, which we have to find and contact care home ourselves if mum wants it. Some areas are different I think. She did mention Local authority carers coming in 3 times a day which mum refused, but if she had accepted then they would have organised those. She also refered me to local carers support service. Its called making spaces and also has a dementia gateway service at same building.
    They gave me a few leaflets of organisations/companies who offer carers, companions and advice who I could contact. They also offered to help us fill in form for attendance allowance for mum and carers allowance for me if wanted. And gave me leaflet of some support things for me as a carer.
    Occupational therapist came out and offered to refer mum to emergency call button service and for a gas detector and suggested a few tips that might help mum.
    At diagnosis appointment at memory clinic on monday we were given a folder with leaflets of some local dementia charities who offer support and services such as dementia cafes, advice and leaflets for local alzheimers contacts.
    I think most things you have to find and contact yourself, which I find hard as I'm with mum all the time and find it hard to get my head round whats best. Also getting mum to agree to help or let me have time and privacy to call is really difficult. My sister has done some calling/surfing but lives a long way away.
    Our ageuk shop apparently has a lot of leaflets and also assistants there to tell you about services including home help and day care centres and also has info online.
    It seems to be a lot of googling and calling to see whats available in your area which isn't the same everywhere.
    Good luck with helping your partners father x
  6. Lyd

    Lyd Registered User

    May 27, 2019
    You'll find we are all at different stages different people will manage differently. If he is able to accept the diagnosis.
    1. LPA is a definate. (In fact most adult should have one IMHO. Who do you want to make decisions for you if you were in a coma?)
    2. Consider if he is safe to drive (would you strap a child into his car and wave them off together) and take action.
    3. If he is willing to move into a property with assistantance or nearer family earlier is better than later.
    4. He should take the medication.
    5. Sometimes help isnt helpful if you stop doing things you stop being able to do things. Its a fine line.
    Good luck.

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