Diagnosed recently but problems already

Discussion in 'Recently diagnosed and early stages of dementia' started by lizc72, Jan 21, 2016.

  1. lizc72

    lizc72 Registered User

    Sep 21, 2015
    My dad has only just been diagnosed with vascular dementia. We have known for a while things were going downhill but when he was getting confused in familiar places we knew it was time to step in.
    He is very unsteady on his feet to the extent he now spends a lot of time in bed and has commode next to bed. My son lives with him but he cant be there 24 /7. There is a history of falls so we do everything we can to help with this but he seems to be getting unsteadier by the day. It doesnt help that dad and my son are stuck in a 1 bedroom flat so not even a chance to get dad into a different room for change of scenery.
    He use to go out on his scooter a lot on his own but its now got to the stage where someone has to go with him as he forgets to stop properly at roads and son has had to rescue him from being hit by a car numerous times. Dad doesnt see the problem and insists he is fine on his own. Is this not seeing the danger normal, he has always been independent and I think he is finding it difficult to accept things are not easy to do any more.
    I am torn between letting him stay as independent as possible but need to make sure he is totally safe as well.
    Any ideas on how to get through this would be brilliant as dont want him to feel like I am taking everything away from him.
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    My dad has vascular dementia & he doesn't realise he's in a dangerous position whilst out & about. It causes a lot of hassle.
  3. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Hi, Liz, and I'm sorry to hear about the difficulties with your dad. I hope that now you have a diagnosis, you will be able to get better treatment and information.

    With luck Fizzie will be along soon to post her excellent list of resources for you to contact. In the meantime, do not hesitate to call Age UK and/or the Alzheimer's Society. They have freephone numbers you can call for advice and questions and information. There is also a lot of good information (factsheets, et cetera) on the Alzheimer's Society website. When you have a chance you may want to have a look at that.

    The short answer is yes, the lack of understanding danger is part of the dementia, or the damage caused by the dementia. You cannot explain to him that something is dangerous; he may agree with you (or not) but he cannot understand it. You cannot reason with dementia. Logic does not work with dementia.

    I completely understand the desire to keep family members as independent as possible, for as long as possible, and for people to be able to live their lives as they would choose. That's a very caring and appropriate wish on your behalf.

    However, sometimes there has to be a difficult choice between independence and safety; safety has to win. It's often not just the safety of the person with dementia, but also others around them. It sounds like you may be at that point with some issues with your dad.

    This next bit is where my understanding of the UK system breaks down, but someone else here will know. Please forgive all the questions, but these are the usual ones that people here on TP will ask: Has there been an assessment? Is there a care package in place? How often are carers coming in? Do you have PoA? Does the GP know of the dementia diagnosis and can you work with the GP? Does your dad attend day care or a lunch club or other programs in his area? Is there support for you, such as a carers cafe or other support group? Has the falls team been to his house to assess it and make it safer? Is he safe to be left alone? How much care can you and your family provide? Does that include hands-on caring like lifting and bathing? How about dealing with incontinence? You get the idea. Sorry if that was overwhelming.

    I hope a UK member will come along to help you sort out whom you should contact for which sort of help, but it will give you something to think about in the meantime. Again, in the meantime, don't hesitate to contact Age UK and the Alzheimer's Society.

    Best wishes to you and your family.
  4. lizc72

    lizc72 Registered User

    Sep 21, 2015
    Hi there and thanks for the replies.
    I have worked in nursing homes so know whats coming which I think in a way is making it easier as not so scary. Its the knowing when is the time to step in.
    We are about to go back to memory clinic so they can speak to dad and explain things to him. I had a call 2 weeks ago to tell me what his diagnosis was but the amazing nurse said she would speak to him as easier for her to answer questions.
    He was under our local falls clinic but been discharged as nothing more they can do.
    There has been a referral put in to adult services but we all know how long it can take them to get going. Am getting in touch with OT who had been out before as she got him commode, bed lever to get out of bed easier, perching stools and a chair. His needs have increased since she was out only a few months ago.
    There is no care package in place as we do the care ourselves at the moment. We know eventually we will have to do everything but we all looked after my mum until she died and she was bed bound at the end so incontinence and personal care doesnt bother us at all.
    Its one of the reason we need him to move as he has a tiny little shower which he hates. He used to come up and use my bath but now the stairs are a real struggle so we tend to do a good wash and showers a few times a week with the help of my son who he accepts help from without a problem.
    We are in process of getting PoA and all services who have been involved so far contact me as first point of call already as they understand the situation.
    Dad did have a visit from community matron the other day thinking about it, it is the one time they werent expecting anything as they had just got back from the shops. She just did bp and temp type stuff and spoke to my son about how things were.
    She will be back in touch when we have had appointment at memory clinic next tuesday.
    Sorry if this all sounds like I am rambling but trying to remember everything lol.
    Dad is in a sheltered flat which means he has alarms ( he refuses to use them ) and someone goes in to check on dad in afternoons when son isnt there. We also have a camera fitted which allows us to see if he has a fall or is in a medical emergency when he is alone. Some people may not like the idea but it gives us peace of mind and professionals involved like it as they know if he falls he wont be laid on floor for long if he cant get up.
    We are hoping he can get a move soon closer to us as this will allow us to give the care needed when he goes further down the path.
    Think I have answered everything ( probably added a lot more too ).
    Oh am looking into the cafes as would be nice to meet others who really understand but they seem to be few and far between :(


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