1. Deli101

    Deli101 New member

    Jul 6, 2018
    4
    Female
    Birmingham
    My husband has been diagnosed with dementia yesterday. I had my suspicions but putting it into words has knocked me for six. He was crying in night I have never seen him cry in 22 years of marriage. He is 58, we have 3 children one is 18 but the other 2 are 12 and 14. I’m worried sick and can’t stop crying. How will I cope, I work part-time, how will I look after everyone? Anyone got advice ?
     
  2. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,328
    leicester
    Hello @Deli101 welcome to TP but so sorry you needed to join us.
    The forum and its members are a wealth of knowledge but if you need to start with basics the Alzheimer’s Society produces a range of fact sheet

    https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    I also wonder if it would help, if not now but in the near future to talk to someone on the helpline

    https://www.alzheimers.org.uk/get-support/national-dementia-helpline

    Please keep posting so we can help support you at this difficult time
     
  3. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,470
    So sorry that this has happened, it must be a terrible shock for both of you. You will get lots of advice on this forum and a great deal of support. It has been a bit of a lifesaver for me so please make use of it.

    Right at this moment you and your husband have had an awful shock and I feel for you. To be honest I would try to concentrate on the here and now if I were you. You have a lot to talk about and it is all probably to much. I am guessing that your husband was diagnosed by the memory clinic and if so you will probably have a lot to ask them. Right now a day at a time until you have absorbed what has happened.

    Please keep coming here and posting. I got more information here than from pamphlets or any of the doctors my dad has seen. We actually had a new member who said that their doctor recommended this forum so that is saying something. You can rant on here, open up your heart to people or just ask advice and you will always get a supportive but honest response.

    Sending you and your husband a huge hug.
     
  4. Deli101

    Deli101 New member

    Jul 6, 2018
    4
    Female
    Birmingham
    Thank
    Thank you we have not been to memory clinic yet just the docs. I had had my suspicions for a while but the other day he went off in his car and was found by police disoriented which bought things to a head. The doctor did tests and said it is dementia can’t say what type yet. I’m so scared, I feel like I can’t leave him on his own now which is hard x
     
  5. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,834
    N Ireland
    Hello and welcome to TP from me too.

    What you are all feeling at the moment is known as anticipatory grief. I see that you have been linked to the factsheets and you will find one there about all types of grief and that will help you to understand what is happening with your emotions.

    In relation to your husband, don't ignore the possibility of anxiety and depression setting in as this is common. Again there is a Factsheet about that and your GP will be able to help if it becomes an issue.

    Most parts of the country have a network of support services that can help and you can do a post code search for what is available in your area by following this link https://www.alzheimers.org.uk/find-support-near-you
     
  6. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,470
    The same thing happened with my dad and his car which also bought things to ahead but dad is 88 years old and I already knew he had dementia. It was a good thing it happened to dad as it was the only way to get him to a doctor.

    You are bound to be scared even if you already suspected. I can't imagine what it is like to have this diagnosis when still relatively young but it must be an awful shock to you both. There are others on this forum who have younger partners with dementia, I think there is a thread dedicated to younger people but most of us read most posts anyway.

    Right now you are probably feeling in an awful state but things will calm down a bit. You may want to take @nellbelles advice and ring the helpline suggested.

    Just keep coming here with any questions, you will get some very sensible answers, I honestly don't know what I would have done without this place.
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,101
    Kent
    Of course you`re scared @Deli101. You have dependent children and are now worried about having a dependent husband. Anyone would be scared.

    Even though you have suspected something has been wrong for a while the actual diagnosis will still have been a shock . It was obviously a shock to your husband too if he was in tears during the night.

    You are both frightened and your husband is very young.

    Have you a good employer? Perhaps you could talk things over with them and see if they can offer any support.

    Read the factsheets which have been recommended on previous posts. You may not be ready to read them yet but they are there when you are.

    Take the support Talking Point members offer. They cannot change the diagnosis but have all been where you are now, many also with a young family.

    Give yourself time to absorb the situation. We are often much stronger than we realise.
     
  8. vmmh

    vmmh Registered User

    Jun 25, 2018
    71
    Deli101 We are here for you, please keep in touch with us as you are just entering this dementia world. I remember getting my husband's diagnosis from a Psychologist. I had seen signs of memory loss in him and took him to a Neurologist. He referred to the Psychologist for intensive testing. At the end of the full day of testing my husband was ready to kill the Psychologist and I think the reverse was probably true also. I sat in his office while he told me the results were "very bad". he didn't put a label on it just then but I remember feeling numb all over, like somebody hit me with a great big sledge hammer. Then my mind began running in all different directions. He was 56 years old at that time and is 62 years old now. The trip this far has been difficult but would have been better if I had had this forum from the start. As others have said, just concentrate on the here and now for the time being. You both need some time to take all this in and adjust. Be open and honest with each other and continue to love each other. Take as much time together as you can get.
     
  9. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    354
    #9 Hazara8, Jul 6, 2018
    Last edited: Jul 6, 2018
    It is believed there are literally millions of undiagnosed 'dementias' in this country. But once you have some kind of handle (diagnosis) on this, you can then approach it. Plan for it. And as every single case is different, there is no fixed template to feel behoven to. Also, here on TP, are friends, many of them, sailing their very own boat - across a selfsame sea. So one is not at all alone in this journey.

    Allow the initial 'shock' to settle into a new reality. Every case is different. Take each day as it comes, because that is really a fundamental given, whether we like it or not. And if there is even a semblance of unease about 'dementia', in respect of friends or family, which one often hears about, then one simply ignores it. You cannot be held responsible for what others might think. And cope you will. The accounts on TP are testimony to that fact and to the remarkable endurance of those who are willing to share them.
     
  10. Life

    Life Registered User

    Oct 12, 2017
    29
    Hello @Deli101. My OH was diagnosed about this time last year and we also have three young teenagers. Having your husband’s dementia confirmed is scary even if you have had suspicions. One of the things that helped me at the beginning was speaking to the admiral nurse, who also very kindly visited the children’s school.
     
  11. Philbo

    Philbo Registered User

    Feb 28, 2017
    645
    Male
    Kent
    Hi Deli101

    Welcome to the forum.

    As said already, the shock and worry about what lies ahead can be unbearable and I remember sticking my head in the sand for quite some time in those early days. I almost thought that if I ignored it, it would go away?

    A relative mentioned a local dementia support group, which we attended and evefryone there sang the praises of a local carer support organisation called Crossroads Care (they're a charitable organisation, so I think it should be okay to mention them on this post).

    Their local liaison chap came round to our house and he was absolutely brilliant. Taking time to listen to our fears and concerns, he went through a lot about the disease and how it affects people differently. He gave us a lot of advice about what we could do to prepare (LPAs, attendance allowance etc) and what support was available (signposting the various organisations and processes).

    I felt much more reassured after this visit and they continue to support us no (4+ years into out journey).

    As suggested, looking online for "support near you" is a good starting point.

    Best wishes.
    Phil
     
  12. marionq

    marionq Registered User

    Apr 24, 2013
    5,746
    Female
    Scotland
    I am so so sad for you and also for others diagnosed with young onset dementia. This is so hard to take at any age but when in your prime must be shattering. I will give you some practical steps to take but I hope you will come back and tell us how you get on.

    Get the basic paperwork done ie POA and Wills. Go to a solicitor or download the forms for POA and do it yourself. Register Immediately.

    Look at your financial circumstances and get all the help and advice about what you can claim from Citizens Advice Bureau or similar. I doubt you will have spare Savings but if you do put it towards paying off your mortgage so the roof over your head is protected if he ever has to go into care. Savings unfortunately are up for grabs by Local Authorities.

    Keep a separate diary for appointments and records of husbands health and behaviour. At the back record all the people you deal with, names, phone numbers, job titles, organisations. In months and years time you may need to contact them again and it may avoid getting the run around if you can go straight to the right person.

    Accept all the help you are offered even if you think you can manage. Usually you dont get offered twice. Encourage family and friends to support him and take him out. Be open and honest with your children but avoid if you can burdening them with worries beyond their age capability.

    Once again I am so sorry you find yourself in this situation and I hope you will get lots of help and advice to see you through.
     
  13. Deli101

    Deli101 New member

    Jul 6, 2018
    4
    Female
    Birmingham
    QUOTE="vmmh, post: 1549903, member: 74898"]Deli101 We are here for you, please keep in touch with us as you are just entering this dementia world. I remember getting my husband's diagnosis from a Psychologist. I had seen signs of memory loss in him and took him to a Neurologist. He referred to the Psychologist for intensive testing. At the end of the full day of testing my husband was ready to kill the Psychologist and I think the reverse was probably true also. I sat in his office while he told me the results were "very bad". he didn't put a label on it just then but I remember feeling numb all over, like somebody hit me with a great big sledge hammer. Then my mind began running in all different directions. He was 56 years old at that time and is 62 years old now. The trip this far has been difficult but would have been better if I had had this forum from the start. As others have said, just concentrate on the here and now for the time being. You both need some time to take all this in and adjust. Be open and honest with each other and continue to love each other. Take as much time together as you can get.[/QUOTE]

    Thank you ... I just have such a deep feeling of dread and don’t think I’m going to be able to do it x
     
  14. canary

    canary Registered User

    Feb 25, 2014
    9,869
    Female
    South coast
    (((((((hug))))))))
    Things always look worse from the front when it just looks like an impenetrable fog, but you will get through it. Diagnosis is always a shock. Marionq has given some good practical advice. I often find that doing things to keep me busy helps.
     
  15. Philpsie

    Philpsie Registered User

    Jan 6, 2016
    35
    Hi I’m so sorry this has happened whilst you’re both so young I really feel for you, I was only 54 when my husband was diagnosed although he’s quite a bit older than me.
    It feels so raw and painful at the moment but one good thing is your husband sounds open to talk.
    When my husband was diagnosed I looked into the future, remembering all the negatives I knew about dementia and being terrified just like you. I learned eventually that it’s best not to think about the what ifs, it’s best to, like the other person said, take one day at a time, enjoying each other as much as you can.
    The dementia services are really good, they will have some time with your children to help them get through this and help them to understand.
    I work too and have found there are things in place to help you, the Alzheimers society and the dementia people will advice you on this.
    I hope being on this forum helps in some small way, we all understand each other on this site.
    Lots of hugs. Please keep us posted.
     
  16. Agzy

    Agzy Registered User

    Nov 16, 2016
    828
    Moreton, Wirral. UK.
    Most of us understand and share your fears including me. The important thing is to get Memeory tests sorted and the meeting with the phsyciatrist as, through that your husband may be offered one of the drugs currently in use, which can be quite effective in delaying (not curing) many of the symptoms. It worked for my OH and past 2 years have been quite tranquil (as against previous times). This time has allowed me to make plans and change things around the house and in life generally and hope it does for you to, god luck x
     
  17. Manc70

    Manc70 Registered User

    May 30, 2018
    119
    Female
    S. Yorkshire
    I’m so sad and sorry for your situation at this time in your lives. There are such wise words and advice given on here that I cannot match, i just want to say my thoughts are with you. I hope you start to feel not so alone. It is such a lot to take in and very scary but I’m sure you will cope especially for the sake of your children. Hopefully medication might be identified to help and as has been said take one day at a time, try and get practical things taken care of and hopefully spend some good family times together. Take care x
     
  18. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,470
    Thank you ... I just have such a deep feeling of dread and don’t think I’m going to be able to do it x[/QUOTE]


    I so wish I could help you @Deli101 but right now you are mixed up, scared and maybe feeling very lonely as well. Right at this moment it is best not to look too far ahead as you may become overwhelmed by emotions and the sheer worry of all of this. You must try to remain strong and try to focus on one task at a time.

    Practical things first. Get help from a reliable friend or relative to help you if at all possible with things like POA. Ask your husbands GP for an appointment with the memory clinic. Find out if there are any support groups in your area, they may prove helpful. Accept help and support from family and friends and if they don't offer then ask them for help. That is the thing that I would have liked more than anything, a little help from family with dad but in my case this never happened and the feeling of being alone is isolating.

    Perhaps a good friend of your husband would be willing to help him in some way by talking with him or carrying on with some kind of activity that they have done in the past, sometimes a bit of outside support is more than welcome. My dad has an old friend from school who still calls on him and kindly does his garden for him. Quiet amazing really because they are both 88 years old and still remain friends and it lifts a little weight off me so I am more than grateful.

    You have too much to process at the moment especially as you have children at home. You don't have to make any decisions about your futures right now. One day at a time until your thoughts sort themselves out and please accept any help that is offered and do keep coming here as it is sometimes the only place that you can release your deepest thoughts and fears.

    You will always find someone willing to listen even if they cannot be of practical help. Sometimes just writing things down and saying what you are feeling to people who will not judge you in anyway can be an enormous help I have found.

    Wishing you and your family lots of strength and many hugs.
     
  19. Pipeth

    Pipeth Registered User

    Jan 13, 2018
    118
    Female
    Northamptonshire
    Deli101 Sorry to hear of your husbands diagnosis, it must difficult with a young family to care for as well. My husband was diagnosed in May, after three years of knowing he had a mild cognitive disorder. The diagnosis was still a massive shock, it takes time to come to terms with it. One day at a time, reading and following the advice of all our friends on TP is the way forward. Post when you need help, read when you feel alone and tired, you will feel less scared in time while receiving the best support available at anytime of day and night. Take care.
     
  20. vmmh

    vmmh Registered User

    Jun 25, 2018
    71
    Deli101, How are things going now that it's been a few days?
     

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