Living with Husband with Dementia

[angelbillk]

Hi all

I thought I would write a bit about me . Im 41 yrs old and suffered anxiety and panic all my life due to bad situations .
I have spend alot of hard work overcoming my situation and was on the road to recovery .

I still get the odd occassion when things get hard but manage to ride it out.

3 wekks ago my husband was diagnosed with Prodoment dementia , his is 50yrs old.
Not only have I lost my dear faithful friend but im grieving before anything happens , does that make since???

We have seen specialist's and there is nothing they can do apart from treat the outburst of mood swings and calm him.

We have been left to deal with this alone and to be honest with you im in the water with lead boots on and i cannot swim.

I know there are sites/meetings and support but Im afraid to go because I know it will bring reality to my door step and I dont know if im ready for that .
Im struggling very hard to get him all the support I can to make his life better but no one is listening to me .

I cannot cope with this . I never expected to be the last one to go , I never expected it to be so soon in our lives but it is here and I cant face it .

My panic is back and im not sleeping . I fear going out but have to , I need to get away from the house to breath and take this in .

There are 3 children involved in this girl 23yrs , 2 boys 19/17yrs and im struggling to keep them afloat .

A mixture of anger , fear , loss all of it for all of us and I dont know what to say to them because I cannot make this better for him or them.

I know this will not heal but I pray that a cure will come but in the mean time I see my husband go down hill every day and can be like a 5yr old or an old man . He has irritated times and expresses anger to which we have to witness because its like flicking a switch.

he is harming himself and wont stop because he dosnt know he is doing it . when he finds out about something he is horrified and in despair .

Im sorry if this is a hard one but I need some kind of sounding board .

Thank you for reading this take care angelb

[Thumbelina]

I admire your post and the ability to speak out.

You are a good wife, devoted partner and and a kind person.
All this together with the news that you have recently received about your husband gave you all this reaction, which is normal.

When I started my recent set back a week ago, ti spoiled my family holidays and we had a hard conversation with my husband where he complained that he cant stand me being like that - and he can do it anymore, and my argument was it could be any desease possible, it could be diabetes, and WOULD he leave the family because i would have that.

Then I told him that if he would get paralised or something similar - i would look after him as THATS WHY WE GET MARRIED FOR GOOD AND BAD.

And then my husband paused and i think it made him think....

You are going to be alright, and this is great that your husband has got you near by to help him when he is inneed...

Your children will also be very proud of you...

I have family memebers from my husbands side in UK that have been looking for years after 85 yo Nana who has Alzaimer and is bed bound and hasnt got a clue whats happening...
They all have a fantastic attitude and their spirits are so hi, they laugh all the time and make jokes and do shifts and clean and cook and I think that the only way that keeps them going.... When I look at them - I admire their attitude.

[pollyanna]

Angelb

i echo with what thumbalina hs said, you are doing your very best in very difficult circumstances, and really its no wonder anxiety is rearing its ugly head.
I really can't imagine how difficult all this is for you, and i understand that there may be support there for you to access but that you dont know if your ready, go and seek it out when you feel ready, there is no rush, it wont help unless your ready and want it, but on the other hand, you could look into it a bit more and then make an informed descion whether its the right time for you or not, but only you will know.
i wish i could be of more help, but this is a great place for airing your thoughts, and there is lots of people here to support you with your anxiety.

Best wishes

Pauline x:hugs:

[teez]

if ever you need to rant ,,feel free im quiet a good listener,,i cant say i understand what your going through as im not in your situation ,,,but i can imagine its tough,,,not only is someone you love going through this terrible thing,,,but the person you,d turn to when times are tough isnt there either,,it will be hard to keep it together,,,but we are all here,, theresa xx

[kazzie]

Hi Angel:hugs:

I kinda know where you are coming from as my Dad had dementia:lac:

There is loads of support etc around and I suggest you have a good look round on the internet to see whats around??

Im sorry I cant be any more help but my Dad died many years ago(he was 87) and times have changed

Luv Kaz x x x:hugs:

[angelbillk]

To you all

I have read your responses and feel I have great support and dont feel alone . Im so glad I decided to take the step and sound this out with you.

Truma like this is hard enough without people putting obstocles in your way , like gp saying we dont have info on dementia, then how does , answer dont know .You dont need that response when you are flung inot this situation .
If they got it right in the right place it would of been sorted along time ago but they decided He was ok and a brain scan was not required . I fought for the scan and said "egg on your face".

so now we move on into this maize of unknown but with strengh i will fight .

I have taken on board all you have said and will act on the facts and points you have made .

Thank you so much for your help with this .

I think I will keep writing here to help me off load if to say .

take good care of you
angel

[kazzie]

Angel:hugs:

We will all support you thats why we are here:hugs:

Kaz x:hugs:

[jill]

Hi Angle:D:hugs:

:welcome: to the site.

My heart goes out to you :hugs: it must be sooo hard for you hun :hugs:

As you can see, there are lots of nice people here who will help and support you.

TAKE CARE

LOVE JILL XXX

[angelbillk]

Hi All

I have contacted our local mind just incase they had any info , thank god I did , they have taken action and helping us . firstly arranging someone to come to the house to spend time with him to either talk or take him out .

They are going to help fill out forms with me .

so Ive made a start .

Today after speaking to my counsillor I feel very sad and weighed down , the pain and fear has become a reality and have sufferes all night with panic .
I so wish this would not start now . He is ill and should be strong . why oh why has my panic come bac into play , i do know why but wish it would go away .
I feel out of control and wanting to run . not from him but from everything .

My children are suffering and i cannot do anything to ease it , say anything to take it away or have no magical cure .
We are a close family , thats what got me through my bad time of being in hospital and suicidal actions , they were there for me so why cant i be strong for them .

Im fighting every day to keep it at bay .

My friends are starting to learn about it through other friends so im getting alot of questions fired at me and cannot or do not have the strengh to answer and find it very hard to talk as it brings reality to the forefront .
My little world of family are being torn apart and i cant do anything .


I feel angery , sad and snappy .

I should be strong and need to sort it out . I will write here as often as i can to let out some feelings as i think it helped with your responses .
thank you for listening
angel

[pollyanna]

Angel :hugs: big hug

Im so glad that you are getting some help and support, that should help a little, really with the stress you are living under its not really surprising that your anxiety is so problematic, anyone even someone who has never suffered with anxiety would probably be floored by this,
You are doing your best to be strong in very difficult circumstance, dont beat yourself up, you will get through this, because as you said you are a strong family, who are going through a very difficult time, and you will all take strength from each other.you are entitled to feel angery and sad, thats how you are expressing yourself at the moment, but as time passes you will find more helpful ways to cope with how you are feeling, .
keep communicating, there are loads of good listeners here to support you.
You are in my thoughts.


best wishes

Pauline x:hugs:

[Thumbelina]

Angel,

You cant even imagine the stress and pressure our body and mind can handle when needed, when it is the only way. When you need to be strong when there is no other way!!!
You dont even know your own capabilities!!!

You are taking right steps with talking to specilaised caregivers. In UK it is pretty developed, so consider yourself lucky in that.
In some countries there would be no help offered at all.

You are fantastic wife, you ache for your husband and it would be wrong if you do the other way around. Its natural. Though it doesnt feel that way...

Time will cure your pain.

Take care

[angelbillk]

Thank you for your support and words of encouragement .

just to let you know it is "frontal temple dementia " one of the worst you can get . we have joined the dementia group here but not yet been as we feel its too soon to face it all. we have telephone support and help with all the benefit system .

My husband has had some nasty outburst over the last week and its been extremely stressful dealing with it . i have been given meds to calm him but getting into him is not easy .
He has never raised his voice in the past but now we are walking on egg shells and worried about what will be said or he will do next .

he has tried to get out the house in the night to go shopping and when i tried to stop him he turned on me . i have been advised to call the police , how the hell can i do that to him .

the service here within the nhs is rubbish and i can forget them for help. apart from the dementia group we will get through it .

I will of course let you know and talk but its very hard sometimes to get on here . tonight im staying up as he is walking around the house and doing strange things .

He wants to harm himself and they are saying this is all part of the damage to the front of the brain .


Life is cruel to the good and i will never understand why.

Im back on high doses of drugs again but afraid to take them as im doing so much for him .

i will write again . thank you for your support xxx

[pollyanna]

Angel
Reading your post i feel so sad, and it must be heartbreaking for you, you are right in that life can be very cruel, and we could spend the rest of our time asking why, but we will never get an answer to that question.
I can't imagine how hard this is for you and your family, but know you are in my thoughts, and anytime you get the chance to get on, you know that we are here for you.

Take care

Pauline x:hugs:

[fishman65]

I really really feel for you angel.I'm a carer for my wife who has mobility problems and ME (chronic fatigue syndrome).I'm struggling quite badly right now with my anxiety so I do know how you feel.PM me if you like.Please take good care,

Andy

[FroggyPrince]

Hi Angel,

I looked after my mum for many years when she had dementia, so I am familiar with some of the issues you face.

You will finds loads of support here, and you are welcome to pm me if you think I can help out in any way.

Paul (Froggy)

[Blot]

:flowers: Angel, I am so sad for you.It must be heartbreaking to watch your life partner change from someone you know into a stranger bc of his disease. You will find such support here
Welcome:welcome: