1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Early onset with a young family : how do you keep it normal for them?

Discussion in 'Younger people with dementia and their carers' started by wheresthepony, Sep 13, 2015.

  1. wheresthepony

    wheresthepony Registered User

    Sep 13, 2015
    11
    Hello, my OH was diagnosed with early onset Alzheimer's in July this year. He is only 51 and we have two DD's; both under 8.
    OH has been off work (they raised the issue) and is going to be ill health pensioned off probably.
    Am feeling a bit swamped tbh. With my own work, my daughters needs and getting head around OH diagnosis and the change in our financial future and looking after him I feel totally emotionally drained and he is still fairly independent at the mo. Am scared stiff about future especially when I read all the handbooks about how the disease may progress. How do you juggle his needs with childrens needs and keep it all together? Advice please,x
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,565
    Female
    Scotland
    You will need help that's for sure perhaps not straightaway but building up gradually. A carers assessment and a needs assessment for your husband could result in someone coming out to help him in the house while you are at work eg sorting and washing the laundry, preparing a meal for you coming home, going with him to collect the children from school. Whatever helps for both of you.

    If you don't ask you will not be offered and the longer you leave it the harder it will be for him to accept help.

    Get in touch with SS and explain what would be most useful.
     
  3. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    It must all seem overwhelming at the moment, and you don't need to do everything at once, but please think about arranging Lasting Power of Attorney for both finances and health and welfare. You may not need either for a while, but it's really important to set this up while you're still able to.

    You don't need a solicitor and can complete most of the forms online.

    https://www.gov.uk/power-of-attorney/overview
     
  4. wheresthepony

    wheresthepony Registered User

    Sep 13, 2015
    11
    Thank you both for your comments. I am doing all the practical stuff, LPA, timetables, lists, etc and gathering info for times ahead. I guess I am looking for advice, support from anyone who has young children who is on this crappy journey too. I feel torn in two between their needs and his.
     
  5. Charper

    Charper Registered User

    Sep 13, 2015
    1
    Early onset with young family

    Hi there. So sorry that you are in this position. My sister is 51 and was diagnosed with alzheimers recently. She is married with a 9 year old son so I know how you must be feeling. Have you contacted your local Carers Centre? I work at a Carers Centre . We support young and adult carers with one to one support, trips activities, training etc. They can support all the family's needs , arrange for benefits advice and arrange for you and your husband to have assessments. Your Carers Centre will support you throughout your family's journey. Have a look on the internet for your nearest Carers Centre.
    The main problem my sister and her husband have is there's not many people in this situation to talk to. I got some books from Amazon to explain what alzheimers is to my nephew (though the only books available were regarding a grandchild and grandparent with dementia) . I also found the new Inside Out disney film a good way of explaining what memory is to him. We have applied for Power of Attorney. The sooner you do this -the better, as it's done and dusted then should you need to use it in the future. I hope this helps a little bit xx
     
  6. Emac

    Emac Registered User

    Mar 2, 2013
    171
    Good practical advice from the first two forum members to respond and good starting points for you. On an emotional level, you take it one step at a time and each day as it comes. You will still be in shock at this point and will almost certainly experience a roller coaster of emotions as you come to terms with this diagnosis , as will your husband. Be gentle with yourself and don't expect to just be able to 'cope' . With children don't overload them with too much information at once, and keep any explanations of changes in their Dad's behaviour short and simple enough for them to understand reassure them they they are loved and they can ask you about anything they are worried about- but hey you know this anyway- you are their Mum. :) Try and keep up their usual routines, hobbies and outings as far as you can for as long as you can and spend time together as a family. You are building precious memories for your little girls for later. Appreciate what you still have while you have it and appreciate every moment. Plan for the future but live as much as you can in the present. Lean on friends and family.You will find the forums a great source of practical information and emotional support. I am so sorry you have had such sad news and wish you and your family the courage and love you need. xxxx
     
  7. Emac

    Emac Registered User

    Mar 2, 2013
    171
    Take care of your own needs, get lots of emotional support from others and you will make good choices re how to support your husband and little girls. Let the children help where they can too and remind your husband they still need him he is still their father. Tough times......
     
  8. wheresthepony

    wheresthepony Registered User

    Sep 13, 2015
    11
    Thank you all for comments. Funnily enough we saw Inside out last week and it crossed my mind that it might come in useful later to explain to them.
    Have a meeting later this week with a support nurse so have a better idea what I need to ask.
     
  9. kathleenr

    kathleenr Registered User

    Aug 19, 2013
    33
    My children are older so my situation is a little different to yours. What part of the country do you live in? Hopefully someone will be close enough for you to feel you have someone to meet for coffee together who really understands the emotional roller coaster you are on; which is similar to a grief reaction really; the first year is horrible! The loss of ability to show love is what hits nearest and dearest, both children and adults hardest, so good friends are invaluable for all of you. Im in Liverpool and had to set up my own support group; its small but we have become real friends and as well as learning from them, I can tell them things I couldn't tell anyone else about how I am feeling. hugs from here x
     
  10. Ms K

    Ms K Registered User

    Sep 16, 2015
    20
    Hello, my situation is similar although my OH has suspected Frontotemporal dementia. I work full time. We have two children, a teenager and our DD is 7. I won't pretend that it has always been easy, there will be good days and bad. Make the most of the good days and make as many happy memories as you can. For the bad days do you have support locally to you from family and friends? If so try to utilise this, there will be days when you need this support. Friends and family may not always find it easy to look after your OH but they may take the kids to the park for a bit. Try and keep their hobbies for them if you can. My OH has lost a lot of cognition over recent months and unfortunately for us he has declined very quickly. I did take our DD to see Inside Out and it did seem to help explain things a bit about how the brain stores information. I have seen her been very caring towards her dad even when he had been difficult, and sometimes I have looked at them and it seems like they have reversed roles. He hasn't been capable of being left to care for her on his own for a while now but they still have had fun times where they play and laugh together. Over time you will start to feel like a single parent in a lot of ways as you will become the one the children come to for support and the one who will make the decisions, which is a strange feeling when you are in a relationship but while your OH can still be involved try and involve him as much you can. Luckily for me my boss has been very supportive in allowing me to attend appointments and I have been able to work from home on occasions. Make sure your employers has it on record that you are a carer as you will have certain rights also.
     
  11. mcgradie

    mcgradie Registered User

    Jun 17, 2010
    134
    Hi,
    I never go on the forum anymore but had to write as my sister and I were joint carers for our mother when we both had very young children (mine were one and three when she was diagnosed). She was diagnosed five years ago and is now in a care home. Two years ago my partner got bacterial meningitis and encephalitis and we are now, sadly, in the process of separating. He has been slightly changed by his experience with a shorter fuse and less flexibility which has really been the final straw.

    I'm giving you this brief background info not to draw you into my troubles, but just to explain that I understand about feeling torn as a carer. When our mum was living alone after diagnosis she was completely unaware of how vulnerable she was and was always inviting strangers in (men) and giving people money. I did not realise the effect on my children until recently - one has had counselling for his short fuse and the other has been a really late developer. Furthermore, my partner didn't in my opinion ever give me the support I really needed when we were supporting our mum (who at that time lived 60 miles away).

    I didn't realise how drained I was until probably 2013 when I had counselling and the counsellor diagnosed lack of self-care. With me this is historical but throw two young children, a vulnerable parent and then an angry partner on anti-depressants and what do you get? A woman who is being pulled in too many directions.

    I am so very sorry that you have to carry this burden for your partner - plus looking after your young children. I urge you to try to build a support network. I know this is hard but sometimes help can come from the unlikeliest quarter - and those you hope will help cannot or won't. I also would suggest finding a really good relaxation podcast or something that works for you - maybe something about 15 minutes long that you can listen to daily. I would build any relaxation time into your schedule - it is a necessity, not a luxury. And practicing mindfulness - perhaps read up on that. It does help.

    If you don't look after yourself, you won't be able to look after those three people who need you. You must ask for help and explain why you need it.

    When your children are a little older they will be able to do more to assist you.

    Wishing you lots of luck, and bon courage. And seriously, take care of yourself first.

    S
     
  12. creativesarah

    creativesarah Registered User

    I really feel for you and don't really know what to say but bhere goes

    I was 55ish (I think) when I was given a diagnosis of vascular dementia

    At first it seemed total disaster I am single (but live with friends) but having had to give up work I have actively got stuck into things that I enjoy like photography and hobbies like that, and if your husband has something that he enjoys I hope he will be able to pursue something that will give him confidence and pleasure I do games on my phone and compputer to keep my brain as exercised as I can
    Perhaps he can do things like that with your girls

    The one thing to remember is each person with dementa early onset or otherwise is unique and won't follow a pattern

    I try to live by the saying Don't curse the darkness - light a candle

    If I can help you in anyway do feel free to PM me

    Much support

    Creative sarah
     
  13. DomC

    DomC Registered User

    Jul 16, 2015
    22
    Frontotemporal dementia

    Hi
    I noticed you mentioned suspected FTD. My wife is 51 and has started to develop speech issues over the last 12 months (or maybe even longer!). There is a family history of Alzheimer's, her mother was diagnosed with "Picks" and her sister was diagnosed in her mid 50's. We are starting the process of getting a diagnosis, and have had an MRI which the GP said was clear. We are due to see a Neurologist on Wednesday for an initial consultation. Can you let me have any pointers or information on what processes you have been through?
     
  14. Ms K

    Ms K Registered User

    Sep 16, 2015
    20

    To be honest things happened quite quickly with his deterioration, we had a neurologist appointment in Jan/Feb and MRI at that time, we were thinking that it may had been a tumor then as the memory issues were not that great and it was more behavioural, headaches and dizzyness that were the issues plus being mid 40's you don't suspect dementia. Also, there is no family history of dementia. We got referred to the memory clinic and had an appointment in April after the scan showed there was no sign of a tumor and the memory and confusion started getting worse. After their tests they said that he had dementia but had assummed vascular at that time as there was a history of blot clots (one of which was the year before), we had three more appointments from the memory clinic with different tests, some repeated from before over the course of a couple of months and it was then that they said that they actually suspected FTD and started him on some anti-physcotics to help with the behavioural issues. We also had a CPN assigned to him as well as an Admiral nurse. We had another neurologist appointment in Aug but this wasn't too helpful and just led to another referral to a different neurologist with a young onset dementia specialism. Unfortunately he ended up being sectioned whilst waiting for the appointment to come through. I believe they are going to do a more in depth scan of the blood flow which should show up more than an MRI but the main thing at the moment is to get his meds sorted out with the right dose so that he is more settled and stable.

    My advice when you meet the neurologist is to be as open as you can with everything, if this is difficult to say in front of your wife then write this down in advance as it is likely you will get asked lots in front of her that you may feel uncomfortable saying things that could upset her. Also if she is unaware of some things she may deny it and that could upset her. You will be asked questions about her past regarding drinking, drugs, smoking, what sort of childhood she had, personality changes, they will want information about family history, siblings and parents health. Try and let your wife answer where she can and only assist where you see her struggling, it will help the neurologist see how she is struggling with speech and thought patterns. Hope the appointment goes as well as it can.
     
  15. canary

    canary Registered User

    Feb 25, 2014
    9,338
    Female
    South coast
    My OH (age 60) is suspected of having FTD, but it has taken a long time (a few years) for anyone apart from family to admit that there is a problem as he gets perfect results in memory tests and scans show no problems. Consequently he was diagnosed with depression, even though I knew he wasnt and that he was stopping doing things because he was no longer able to do them rather than because he couldnt be bothered.

    The neurologist will take a detailed history (and I agree, write it down and give it to the receptionist when you arrive). A little piece of advice I was given is to sit a bit behind your OH so that he cant see you and then when he gives answers to the neurologist you can silently shake your head if you dont agree with what he says. They will want to know about behavior: any incidents of anti-social, embarrassing and inappropriate behaviour; changes in mood: anger, aggression or apathy/emotional "flatness": problems with speech: losing words or misunderstanding what is said; problems with memory and anything else that you might find significant. I told them about the way that he is able to talk about things in theory, but quite unable to work out how to put it into practice. I was also asked (surprisingly) if he ever choked when eating - which he does because he puts too much in his mouth and doesnt chew it sufficiently before swallowing!

    The neurologist will also do a physical examination, check the leg and arm reflexes, probably get him to walk to look at his gait and check hand co-ordination.

    He will probably do a mini mental state exam (which OH passes no probs :rolleyes:) and send him for blood tests, a neuropsychological examination (pencil and paper based test done by a neuropsychologist to check for any cognitive problems) and a scan.

    If the scan doesnt show anything then he may get sent for a SPEC/PET scan which often shows problems even if the ordinary scan doesnt. They may also send him for ECG or a lumber punctur. This last one is rare, but my OH has had this - they are looking for the proteins that cause the FTD tangles.

    My OH has had all of the above tests, but we have not yet had the results. From my research it looks like unless it is very clear cut and shows problems on the scan it can take a while for a diagnosis of FTD as it is unusual.
     
  16. DomC

    DomC Registered User

    Jul 16, 2015
    22
    Thank you so much that is really helpful
     
  17. DomC

    DomC Registered User

    Jul 16, 2015
    22
    Thanks for the pointers I will bear them in mind and make a list. My OH acknowledges the speech element but I think bringing up the behavioural changes will be difficult in front of her. I checked the Neurologist's credentials and he specialises in Parkinsons and movement disorders so I'm expecting to have to push quite a lot with the possible FTD diagnosis!
     
  18. canary

    canary Registered User

    Feb 25, 2014
    9,338
    Female
    South coast
    If he specialises in movement disorders do you know why she has been referred to him? Does she have problems with movement?
    I am asking because my OH has peripheral neuropathy and I have been told that about 10% of people with FTD also have a movement disorder.
     
  19. DomC

    DomC Registered User

    Jul 16, 2015
    22
    Hi Canary
    He was the only Neurologist close to where we live! He has now referred my OH to The Salford CFU in Manchester, for more tests in order to hopefully get a diagnosis.
     
  20. DomC

    DomC Registered User

    Jul 16, 2015
    22
    Primary Progressive Aphasia

    Hi All
    Gill had a diagnosis confirmed yesterday of Primary Progressive Aphasia (PPA) at Salford CFU, which came as a shock to her, and we are now starting on our journey into the unknown as a family. I have a load of information I've been researching and collecting but I don't want to broach this with Gill at the moment as I think it will overwhelm her, I suppose I've just got to take my lead from Gill and her reactions over the next few weeks, to suggestions of support groups etc.
     

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