How much more?

[Vall]

Totally new to this, but feeling at the end of my tether. I love my husband so much but cannot bear to see him disappearing before my eyes. Will I ever stop crying?? I hope someone will help me but there is no one to help. I hope someone will call on me and ask me how I am, but they don't because I am not the one with dementia. No one calls on my husband either, presumably because he has dementia. I pick up the phone for someone to talk to but can't think of who to call. Who really wants to listen to me going on about how painful it is?

I feel totally selfish and inadequate. I read everybody else's difficulties and I know others are stuggling to cope too, but I am nowhere near accepting what has happened and getting on with it. I feel life has closed in on us, there is a world out there that we are no longer a part of. I look into the future and can't stand it.

Please don't tell me off for being such a wimp, I do that myself all the time!!

Vall

 

[Kayla]

Dear Vall,
You are definitely not alone and you are not a wimp either. Everyone who has a relative or friend with dementia feels isolated and worried. The important thing now is to ask for help and information on this site. (Fact Sheets etc.)
Then find out about help available locally through your GP, Age Concern, Alzheimers Group and Social Services. People are reluctant to start talking about dementia, but once you begin it is surprising how many actually have experience of it. Telephone your family and friends and try speaking to them, as they may want to help but not know what to do.
Now I know more about dementia, it is easier to understand my Mum's illness, but it is still hard to come to terms with it. She is now in a nursing home so I don't have the day to day problems any more. I hope you find some one in a similar situation to help you here on TP.
Good luck!
Kayla

 

[Lynne]

Hi Vall, and welcome

No one here will EVER tell you off for hurting, crying, being angry, lonely, frustrated, having a good rant about the bloody unfairness of it all - whatever you need to say at the time, just let it rip!

Please tell us a little about yourself & your husband if you would like to. How old are you both, do you have children? Has his dementia been diagnosed specifically? By my own untrained observations of people who post on this forum, vascular dementia seems to be quite a common cause of illness in younger (under 65) patients, but perhaps this is not the case with your hubby. Whilst there are several types of dementia, and of course individual, personal variations in each & every case, many of the signs & symptoms are the same during the course of the illness. Tell us what he's like at the moment - someone will be at that stage with their loved one, or have been through it, and may be able to offer advice based on their experience.

There are all variations of relationships here; daughters looking after Mum or Dad, Sons ditto, wives looking after husbands and husbands caring for wives, even grandchildren closely involved in caring for their grandparents.

My own situation is that my 87 year old Mum has just been diagnosed with Alzheimer's disease, having been showing the signs for about 3 years. [And please don't tell me "well at 87 she's had a good innings"! I've heard that so many times lately, like that makes it OK for my lovely intelligent Mum to have her brain dissolving before my eyes! (See, I'm having a rant already - sorry!)]

Have you tried to make contact with the local Alzheimer's Society branch for your area? Do you have contact with the CPN (Community Psychiatric Nurse) or Social Services? Does your husband attend any day-care club, to give you both a short break & change of routine?

I'm a nosey 'welcoming' messenger, aren't I? Take it at your own pace Vall, get your feet under the table here. You'll find plenty of new friends whom you will never meet (in all likelihood) but you'll belong in no time. You're not alone any more, you've found us. Chin up, and take care of yourself.

 

[Áine]

Please don't tell me off for being such a wimp, I do that myself all the time!!

oh well, Ok then, we'll let you get away with it just this once ....... but no more whinging

welcome to TP Vall ......... i'm sure that really no one is going to tell you off for being a wimp ..... you're not being. this is hell and it takes some coming to terms with. there's plenty of people around here who understand that only too well.

hugs

Áine

 

[Margarita]

Well you got us lot now so welcome aboard are journey to the unknown. I really know how you’re feeling when you say

I feel life has closed in on us,

What I did was to phone social services , who got mum into AZ day centre then join a carer group & the AZ Group , then took the other of respite , spend lots of hours on the internet , then got a carer in the morning to help me wash mum ,so giving me someone to talk to & motivate me , the tears do stop but are like a tap with the washer broken keep dripping now and then & when I am PMT they don’t stop , but I just carry on & it does get better . On the day mum go to day centre I go swimming.

Do you have any children? Mind you they get fed up of hearing me go on about AZ that why TP is so good but they are good for a hug, & encourage me to go out while they look after mum. I always seem to bump into someone in the supermarket & it’s nice just listening to something other them AZ, join you local council sports centre do a bally dance class, I did that.

It does get better ounces the shock grief of it all subsides, your no whip you’re a great loving caring wife tell your self that in the mirror & give your self a hug . while I send you a ((( hug)))

 

[Vall]

Ok, few more details
Husband saw consultant 16 months ago. Frontotemporal dementia diagnosed but only saw consultant 9 months later, there is no treatment. For the last 5 weeks he has been going to a day centre assessment unit one day a week (brill) and that is where we are up to.

He is such a lovely, clever man it is hearbreaking to see him do stupid things all the time and not even know. (communication and memory are the worst problems) He had only recently retired at 60 when his problems started.

Thanks for your interest, Vall

 

[Amy]

Hiya Val,
Welcome to TP. No need to pick the phone up, just switch on the computer, there's always someone ready for a chat; and we can all talk about dementia none stop, and we're all interested in the frustrations that you are feeling, or the daft things that have made you smile.
You'll find that the tears come and go; one day you will think that you are doing really well, then wham, it will hit you again.
Looking forward to getting to know you better Vall.
Love Helen

 

[Nutty Nan]

Hi, Vall, and welcome.
Belonging to TP is great, the reason we are all here, however, sucks ...... believe me, you are not the only one who feels isolated, frustrated and inadequate. It is heartbreaking to watch this 'great brain robbery' (quote from Learning to Speak Alzheimer's), and equally sad to be faced with a future without hope.
However, here we are, and if we don't have the guts to walk away, then we might as well find out as much as we can about this grotty disease so that we can support our loved ones as much as possible. Good days and bad days are ahead, but whatever your emotional state, and whatever the time of day or night, there is always someone here to 'listen', and if you can't confide in your existing friends, then you can do it here in the knowledge that everyone will understand and nobody will ever judge you.

Lots of hugging and smiling always helps: I am sending you one of each, please share them with your hubby and hopefully he will appreciate it!

 

[mel]

" Who really wants to listen to me going on about how painful it is?"


We do,Vall ..so we can help each other!
Love
Wendy
x

 

[noelphobic]

Does it take guts to walk away?

Hi, Vall, and welcome.
However, here we are, and if we don't have the guts to walk away, then we might as well find out as much as we can about this grotty disease so that we can support our loved ones as much as possible. !

I find that a really interesting comment. Do you really believe it takes guts to walk away? Doesn't it take guts to stay?

 

[Helena]

I really truly feel for anyone watching a 60 yr old with a brain dissolving before your eyes its simply appalling

Just at the time you should be retiring and able to enjoy life it deals that kind of hammer blow

I am afraid I cant feel the same way when people are 87 /90 etc because we all have to die of something however i do think that Dementia of any form is one of the cruelest diseases going and worse still its a long goodbye

For anyone caring for a dementia patient their own life is also mighty important and i think the current appalling state of government funding for social services etc places an awful financial burden on the patient /carer which furthur limits any enjoyment in life

While many deplore the latest suggestions on Euthanasia that have hit the headlines recently just maybe its something everyone should be able to have their say upon much earlier in life providing of course very strict controls are in place

 

[Amy]

Hiya Noelphobic,
I think it takes guts to do both. When you say walking away, I'm not thinking about those who just don't care, but those who do care, who do love, who do feel a duty and responsibility, but who feel that they just don't have it within themselves to cope. That must be so hard, such a sense of failure. Or maybe such guilt at chosing to live for oneself, and abandon the one that you are meant to love. I think that you have to be very strong to do that.
But I also think it takes great guts to stay the course - to open yourself to hardships and pain; to walk alongside to the end, to sacrifice.
love Helen

 

[Amy]

Hiya Helena,

I am afraid I cant feel the same way when people are 87 /90 etc because we all have to die

I'm sorry, but no matter what the age, to watch a loved one 'disappear' is incredibly painful and incredibly sad.

For anyone caring for a dementia patient their own life is also mighty important and i think the current appalling state of government funding for social services etc places an awful financial burden on the patient /carer which furthur limits any enjoyment in

I don't think that my father would enjoy his life any better, nor would I, if my mum's care was funded. It is not the cost that pains us, but the person that we want to share with not being 'there'.

I really truly feel for anyone watching a 60 yr old with a brain dissolving before your eyes its simply appalling

it is incredibly sad, incredibly painful, but not appalling. I would not wish dementia on anyone, but I think that loving someone with it, can make you discover hidden strengths and goodnesses in yourself and others. It is not all bad; there are good times - you have to just keep on loving the person, where they are.
Helen

 

[Kayla]

Last year, when Mum was approaching her 80th Birthday and the psychiatrist came to the house after some particularly disturbing hallucinations, she told him that although she felt that she had lived her long life and was prepared for death, she felt that she would never want to take her own life or shorten it artificially. She said that there was a right time and place for a life to end and it is not for us to make the decision.
I know that she is not afraid of dying, because she has always had a very strong faith, but to carry on living is much harder for her as she has had severe rheumatoid arthritis for 25 years. In some ways she has suffered more pain and distress with this illness than the dementia. At least now she seems to be in a kind of dreamland where nothing is real to her.
What needs to be done now, is for more research into "unfashionable diseases" like dementia and rheumatoid arthritis. Cancer and heart disease have had so much money spent on them, that treatment is at the very cutting edge of our knowledge . Other illnesses must catch up and their research might even help cancer and heart disease patients in unexpected ways. Rheumatoid arthritis is not an old person's problem, kids can get it too and it is definitely not a joke, it is a very painful and disabling illness. I'm also convinced the the steroids used against the arthritis have had some part to play in Mum's vascular dementia.

 

[Vall]

I can't tell you how touched I am that you have taken the time to help me, and you don't know me! I will re-read the replies when things get tough. Thanks to everybody.

 

[Margarita]

vall

I know we don't know you , but from your posting it sounds like its

tough

Now for you , wishing you all the best

 

[bel]

Sending Love

Dont you dare appologise or say you are a whimp xxxxxxxxxxxxxxx
My hibby has dementia it is hard to say the least but try to open up on tp i know its hard i still find it so but these are a lovely group of people who are in the same boat as us
Keep on posting
Love Bel x

 

[connie]

Think it is time for a big group hug. Love