Feeling hopeless

[Alison N]

Re: Welcome to Talking Point
My husband has been diagnosed with Alzheimer's at 51. The bottom has dropped out of our world. All the plans we had for a happy retirement have been dashed. All I want to do is make him better but I cant. I spend a lot of my time in tears. All I can think about is what will happen in the future instead of concentrating on the here and now. When will this feeling of hopelessness disappear and the practicalities kick in? I see so many people on here that are so brave and I wonder how they do it.

 

[ChloeE]

Re: Welcome to Talking Point
My husband has been diagnosed with Alzheimer's at 51. The bottom has dropped out of our world. All the plans we had for a happy retirement have been dashed. All I want to do is make him better but I cant. I spend a lot of my time in tears. All I can think about is what will happen in the future instead of concentrating on the here and now. When will this feeling of hopelessness disappear and the practicalities kick in? I see so many people on here that are so brave and I wonder how they do it.

Dear Alison

II have nothing wise or profound to say. I just wanted to respond quickly to your post, so you know that there are many others on-line before 7:00 in the morning just like you, and many coping with truly dreadful dementia-related situations. When my mother first became ill and I was awake all night caring for her I suddenly became aware of all the other people who must be in similar situations at exactly that time in the night and felt a deep sense of connection to them. Once I started mentioning my mother's dementia at work I realised that two of my closest colleagues were in a similar situation but we had never discussed it.

So I just want you to be aware that even when you feel most frightened and alone in this situation you are surrounded by the love of strangers.
With my love
ChloeE

 

[Izzy]

Hi and welcome to TP.

I know how hard it is when you first get this diagnosis. It must be even harder when your husband is so young. It will take time for you both to come to terms with this and start thinking of the practicalities. Meantime I'm glad you gave found TP. Please use the forum to support you. There's always someone around who can share their own experiences with you. You can also just come on here and get your thoughts down or have a rant.

I wondered if you would find this Factsheet useful -

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=122

Easy for me to say but it's one day at a time. It's good to be informed but don't let thinking of the future spoil what you have here and now. My husband was diagnosed in 2001 and we've had a lot of good years since his diagnosis. I can't say they've been as I would gave wanted them to be but we've had good times never the less. It's a matter of adjusting your expectations and being well planned. The disease is different for everyone. Use whatever help and support there is out there to help you enjoy your time together.

Looking forward to seeing you around.

 

[Hellyg]

Hi Alison

My husband is 55 and was diagnosed with Alzheimer's in November. I felt the same as you, just cried for days and didn't think I would ever get to the place where I could enjoy things again.

However I am now feeling more able to focus on the here and now, helped by the initial shock wearing off, having learnt a lot and getting the practical things in place (Lasting Power of Attorney, revised wills, understanding benefits available in the future to plan as we still have a mortgage), the support of good friends and some counselling which helped me think about what we still have now. Also I was determined to make sure my husband got to do all the things he enjoys as much as possible.

I have private messaged you in case you want to chat to someone in a similar situation as you.

 

[Alison N]

Thank you

Dear Chloe, Izzy and Helen
Thank you for your support. It is good to know that any time I need to talk there is always someone out there ready to listen and at any time of the day or night.
Xx

 

[Sammyjo1]

Hi Alison.

My OH was diagnosed with Alzheimers in July - he's 65 so not as young as your husband but it was still a huge shock nevertheless. I remember so well the feelings of despair and hopelessness (and the tears I shed) at the beginning but it does seem to settle down once you get used to knowing about the illness. I still have moments when I am scared of the future but I try not to think too far ahead. I guess it's almost like a bereavement where it is impossible to think you will ever feel OK but somehow your inner strength kicks in and it does get better.

For me hearing the diagnosis immediately made me think of how it might be a lot further down the line and I lost sight of the fact that basically nothing had changed in the present and in fact the diagnosis was a good thing because he got put on donepezil which has made a huge difference to how he is on a day-to-day basis.

I am lucky in that he is able to talk about it openly and we have told friends and family and work colleagues all of whom have been supportive. I hope your husband will find it helpful to share his fears with you.

Just make sure you look after yourself and give yourself time and space to deal with all of this. I have found TP a great place to come and browse. I don't contribute much but it is so reassuring to know that there is somewhere to ask questions and to be honest about how I'm feeling. Everyone here is so supportive it's brilliant.

Take care

 

[Alison N]

Thank you for your support

I have taken advice from the very kind people who responded to my despair of not looking too far ahead and it is helping me. As sammyjo1 says, nothing much has changed in the present and it is a case of adjusting. Things always seem bigger when you are laying awake at night with only yourself to reason with.
I have booked a holiday in July for us both. Simon is a steam train enthusiast so we are having a week in Scotland travelling on every steam train they have! We have always planned to do it and kept putting it off so now is the perfect time.
I take strength from reading TP every day. I marvel at how so many of you stay so strong and sometimes cry and sometimes laugh out loud at the things that happen. Thank you all for being there.

Alison x

 

[Trixxie]

Hi Alison, I'm in the same boat as you! My hubby diagnosed beginning of last October with Alzheimer's at the age of 54! We too were in shock, we were angry, felt cheated of our retirement, why us?...... All the usual!
Four months on and we're a little different, we've become used to it now, want to make the most of our time, loving each other more than ever before, soppy I know but you have two options I think.. Sink or swim!... We're swimming!
I promise it will get better once the initial shock sinks in, there are always people on here to help. I've made some lovely friends via email from here all in the same boat. Take care Alison. xx


Hubby recently diagnosed with Alzheimer's

 

[NanLorac]

Hi Alison sorry your husband is so young to have Alzheimer's. My hubby was 61 and all our dreams were shattered but 3yrs on we are getting on with our new life.

Like you I cried buckets at first and you feel all alone, but your not, you have found TP and you need to find groups in your area. Get in contact with the Alz Society and find out what's on near you. Encourage your husband to go as it will help him to talk to others about Alzheimer's too. We have people aged 50 upwards at our Memory cafe. I also have someone from Alz Scotland that takes my husband out 3hrs a week and I get 3hrs me time.

Take care Carol x

 

[Alison N]

Hi Trixxie, you are so right about swimming but what other option is there? It has given us a kick up the backside to do all the things that we were putting off. Like clearing out the garage and the loft and decorating some rooms in preparation to downsize. Not really the way in which we wanted the 'kick' but it is making us do it.
X

 

[henfenywfach]

Re: Welcome to Talking Point
My husband has been diagnosed with Alzheimer's at 51. The bottom has dropped out of our world. All the plans we had for a happy retirement have been dashed. All I want to do is make him better but I cant. I spend a lot of my time in tears. All I can think about is what will happen in the future instead of concentrating on the here and now. When will this feeling of hopelessness disappear and the practicalities kick in? I see so many people on here that are so brave and I wonder how they do it.

Hi ALison..
Youve taken the first step and the bravest of them all...by telling someone how you feel. Time and time again i see people that are alone talking to no one...youve taken a huge step...
The truth is that at some point like an abstract painting.the helpessness blends with the practicalities..and un aware of it you are managing both!...
We are all in different situations..different types of dementia..and find different ways of coping.
The one thing that you need to ensure for yourself is that you dont just blend in yourself..and disappear...
What ever you do or dont do..the journey for your loved one will happen..
Its ok to cry its ok to laugh..
Its a journey that has lots of ups and downs..if help is offered take it....and if not offered seek it...you will move on slowly..but only when the shock youve all had is slowly disappearing....best wishes

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[Trisha4]

Re: Welcome to Talking Point
My husband has been diagnosed with Alzheimer's at 51. The bottom has dropped out of our world. All the plans we had for a happy retirement have been dashed. All I want to do is make him better but I cant. I spend a lot of my time in tears. All I can think about is what will happen in the future instead of concentrating on the here and now. When will this feeling of hopelessness disappear and the practicalities kick in? I see so many people on here that are so brave and I wonder how they do it.

Hopeless, helpless, in despair and frightened of the future. That's how I felt when my husband was first diagnosed in his mid 60s a couple of years ago. I then decided that there was no point spoiling today worrying about tomorrow and to concentrate on the 'can dos' rather than the 'can't dos'. Of course it doesn't always work but it does most of the time.

I also look at what we want to do and think, how can I make this easier?

We still travel quite a lot although I have to make all the arrangements, handle money, etc. We are off to China in April. I am hoping I am not being too ambitious! My advice would be that whatever you want to do and can afford in time and money, get on and do it.

When people say or suggest that we don't know what next year will bring, my answer is that no-one does.

On the practical side, we sorted out power of attorney very early on. I applied for attendance allowance for him. I think it is a different allowance under 60. And I went to a CrISP course for carers of people with dementia which I found very helpful. I am the sort of person who feels more in control if I am proactive at this stage but we are all different.

I completely understand how you are feeing and I sincerely sympathise. It's not fair! I'm sure you will find TP supportive and helpful. I certainly do.


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[Alison N]

Thank you for the advice Trisha4. What you say is so true. We are in the process of setting up LPA. Where do I find out about CrISP? Is it something that this website can help with? I certainly need someone to help me with learning to care.
On the outside my OH is just the same but on the inside he is not and it is something I forget on a regular basis. Sometimes I don't have as much patience as I should. It is so hard.

Everyone on TP is so helpful and caring. Until you go through something like this you have no idea.

 

[NanLorac]

Found this online for you http://www.miltonkeynesccg.nhs.uk/dementia/ at the bottom it gives you groups to join.

Alzheimer Society do carer training in my area. Phone your local office and get information for carer groups and training.

Alison I promise it will get easier. The first time I really fell out with my husband, he stormed off, then came back and said 'just shout at me and get it over with' I said 'its the Alzheimer's I'm angry with, not you so there is no point in shouting is there'. He came over and gave my a big hug and since then its like we having a third person in our marriage and that's how I see it now.

Take care Carol x

 

[Trisha4]

Thank you for the advice Trisha4. What you say is so true. We are in the process of setting up LPA. Where do I find out about CrISP? Is it something that this website can help with? I certainly need someone to help me with learning to care.
On the outside my OH is just the same but on the inside he is not and it is something I forget on a regular basis. Sometimes I don't have as much patience as I should. It is so hard.

Everyone on TP is so helpful and caring. Until you go through something like this you have no idea.

The CrISP course is run by the Alzheimer's society. Best idea is probably to contact your local Alzheimer's Society and ask them what's available in your area.
I know just what you mean about being the same on the outside. My husband is too, he is physically very fit. It's hard to reconcile that with the changes in him. And sometimes I certainly don't have as much patience as I should but most people on here agree that that is the case with them too. I feel guilty sometimes as many people on here are coping with a lot more than I am but everyone is very supportive whatever stage we are all at.


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[Alison N]

Coping

I can't seem to start a new thread and I hope someone can point me in the right direction.

I read so much about all the problems so many of you have and how you all cope with whatever is thrown at you but I never read if you have anything to give you a 'pick me up'. I am finding it increasingly difficult as I can see my husband deteriorating. I am considering asking the doctor for medication to help me cope but I feel like I have failed so soon into the journey.

I am always up very early in the morning around 4am as my mind is forever on the go and I know lots of you are the same so I know it can be hard for all of us but do some of you resort to pills to help you through the day?

 

[Canadian Joanne]

Alison, you may well be suffering from depression and I think it's highly appropriate for you to discuss this with your doctor.

No, it is not a failure to cope - to be honest, I don't think I cope, I simply endure. At least you have the insight to see that you also may need help at this so very hard time.

I personally don't take pills but in the last few months I have at least one night at week when I will sleep up to 14 hours straight. This has caused me to call in to work at least a couple of times. My boss is very understanding but I'm fortunate that way. I do feel my extreme sleeping is my method of coping.

 

[Izzy]

Hi again Alison. I think you're fine to carry on posting on this thread. Quite a few of us have a long running thread and just keep adding to it.

Like Joanne I think you see your GP. It's far from easy to cope with this disease and we all need a little help along the way. I think being up early or through the night is common for us. So much going round in our heads. I think it would be wise to go to the GP and share how you're feeling. It's certainly not a failure.

Have you had a carer's assessment? I've read mixed reviews about this process on TP but it might be worth you exploring that process. This fact sheet describes it. It's about half way down -

https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=131

Let us know how you get on. I think it always helps to share here.

 

[janey106]

Hi Alison, hope you don't mind me commenting as I'm not in the same position as you are but I couldn't help but wonder what support you have for you? Do you get time just for you, your own interests, meet with your own friends at all? I know for me a 'sounding board' away from the family and the illness is critical. Definitely agree that GP visit is needed, if only so they can monitor how you are managing. Everyone has different coping mechanisms anyway, what have yours been in the past ...are they still available to you? Sorry ...lot of questions. Just hoping you remember and look after your needs as best you can. Take care of yourself.

 

[Alison N]

Thank you all for taking the time to respond. I haven't had a carers assessment as I thought that as we were self funding they would not really be very helpful and I would feel like I was wasting their time but I will now consider it. I think I am probably depressed and I had counselling when my husband was first diagnosed and I found it helpful but now I feel I have been cast adrift as it can't go on forever. I don't have a support network as we live a fair way from the rest of the family and I don't really like to leave him for too long and when I do I just worry all the time I am out.
I have been told about 'Home Instead' which is an organisation that can keep my husband company with anything he would like to do, walking, shopping or just conversation so I will give them a call to see what they can offer.
I have booked a doctors appointment and will let you know how I get on and thanks again for listening. It really helps to be able to put down in words what is going on round and round in my head.