Dementia’s journey

[Dutchman]

It’s early morning at my daughters and everyone is getting ready for work/school. I on the other hand have an empty day and I dread doing anything and I feel helpless.

I came here for a change and all I’ve done is bring my depression here with me. I just can’t seem to have the motivation to get involved. While my wife is in the home I can’t accept her never coming out. To be on my own is terrifying and I just can’t see a way forward.

I don’t want to be a burden to my children but I don’t see a life for me now .

 

[jugglingmum]

Can you find something local to do for an hour or so ?

A library a local park to walk round a museum or art gallery. It will help pass a few hours. You don't need to enjoy it but better than sitting in your daughters house.

Can you go out and buy something for your grandchildren. Depending on age most enjoy a present that makes them feel special. I don't mean expensive just to show you've thought of them.

 

[Dutchman]

What wrong with me? I know it’s grief and trying to fill a hole left by my wife not being here. Am I drifting into proper depression because I don’t know the signs. All I know is that I just cannot get interested in anything.

 

[DesperateofDevon]

I’m going to chat to the near family and I’m sure we’ll come to a mutual understanding about Christmas. Anyway, it’s about do the right thing all around for everyone including the care home.

And Christmas is 3 months away. I can’t imagine what the situation will be that far ahead. But of course I still wonder about it.

Go to your daughters for Christmas, you have grandchildren you can comeback on Boxing Day - roads are quiet & an easy drive & visit your wife.

You have a daughter your own child to make a fuss off; trust me as a daughter with both parents with dementia I would love to be made a fuss of by a parent!
Take this opportunity while you can

 

[DesperateofDevon]

What wrong with me? I know it’s grief and trying to fill a hole left by my wife not being here. Am I drifting into proper depression because I don’t know the signs. All I know is that I just cannot get interested in anything.

Ok I’m going to be honest here brutally honest... so I hope I don’t upset anyone.

Only you can make the first tentative steps.
No one has a magic answer, no words will transform how you feel.
Empathy from others can only be productive when used by yourself to make those first tentative steps forward.
The easy option is to stagnate, it takes no effort on your part.
Yes grief & early days play a big part in your experience- but your daughter is also grieving not only that dementia has robbed her of her mother but it also has robbed her of her father!

Get up!
Do something nice for your daughter etc to come home to.
Flowers , prep for a meal, Hoover her home...
by doing things for someone else your mood will lift.

 

[canary]

Am I drifting into proper depression because I don’t know the signs.

I dont mean to nag you here and I dont want to you to feel that Im getting at you and I certainly dont want you to feel that you cant post how you feel on here. Im just trying to explain the way forwards.

I will tell you something that I dont tell many people. I have had a full-blown nervous breakdown in the past, took an overdose and ended up in hospital. I have learned that just sitting around thinking about it all doesnt make it better. There are always choices (even if they are between 2 things, neither of which you want) and I had to choose to get better

I dont know whether or not you are drifting into depression, but I do know that its not going to go away overnight.
You do actually have to make the first steps. I know it wont be easy and you probably wont either enjoy it or even find it satisfying to do things to fill the gap to start with. You will probably feel like you are just going through the motions, but sitting alone mulling over everything could well propel you into full-blown depression. Take baby steps and do things - anything; exercise - going for a walk, hoovering, a bit of gardening or fixing a squeaky door - is very helpful and lifts your mood.

.

 

[Dutchman]

You are all so kind and considerate. I know that I’ve got to make the effort and no one else can do it for me. I know all that and I need to be nagged.

I’ve been asked if I have contemplated suicide. but then my wife would have nobody and anyway, I know I’m very unhappy, but I’m not sure of what type of mind state I’d have to be in to be sure I want to die.

I do hope the Prozac helps soon. The Admiral nurse is phoning @ 15.00 to find out if I feel better.

When I first started to post years ago it was moaning about my life with my poor wife’s dementia. But I was never this miserable at the time just busy being a carer and frustrated I suppose.

Now I worry about her in the home and frightened for my mental health now I’m alone. Six weeks ago today she left the house.

 

[Dutchman]

I dont mean to nag you here and I dont want to you to feel that Im getting at you and I certainly dont want you to feel that you cant post how you feel on here. Im just trying to explain the way forwards.

I will tell you something that I dont tell many people. I have had a full-blown nervous breakdown in the past, took an overdose and ended up in hospital. I have learned that just sitting around thinking about it all doesnt make it better. There are always choices (even if they are between 2 things, neither of which you want) and I had to choose to get better

I dont know whether or not you are drifting into depression, but I do know that its not going to go away overnight.
You do actually have to make the first steps. I know it wont be easy and you probably wont either enjoy it or even find it satisfying to do things to fill the gap to start with. You will probably feel like you are just going through the motions, but sitting alone mulling over everything could well propel you into full-blown depression. Take baby steps and do things - anything; exercise - going for a walk, hoovering, a bit of gardening or fixing a squeaky door - is very helpful and lifts your mood.

.

I don’t mean to be personal and if you don’t want to tell me don’t. I don’t want to pry and upset you.

Many years ago my wife had a nervous breakdown and had a year off work. The company she worked never appreciated her struggle. I was there to support her of course. She phoned me from work and told me to pick her up.

How do you recognise clinical depression and a breakdown? Can you see it coming? At the moment I’m quite calm sitting and posting but in the background are thoughts of my wife, my loneliness and an expectation to get out there are make a life for myself. I keep rereading my old posts and see how miserable I was then. But I never imagined for one moment that the contrast of her at our home and then into a care home would be so dramatic and devastatingly awful for me.

Thank you canary for your wonderful support

 

[Dutchman]

I wish I could explain it easily but grief mixes up your emotions so much. I’m in town having given my daughters house some freedom from me and my withdrawn look. I try to look brave but my anxiety shows through.
They are very understanding

I know that I’m becoming a bit of a bore on the forum always complaining but I need this place to get me through. Otherwise I’ve got nothing.

I’m sitting here looking at other lone men of my age (71) and wonder is that going to be me. Perhaps they are happy perhaps they’re lonely. I just had a sudden lurch of the stomach and a stab of anxiety when I thought of my wife in the home. I feel so sad for her. It’s not her fault she’s there and now she’s stuck there confused and wanting to escape her dementia and go ‘’home’’. And I can do nothing about it.

 

[canary]

I don’t mean to be personal and if you don’t want to tell me don’t. I don’t want to pry and upset you...................................How do you recognise clinical depression and a breakdown? Can you see it coming?

I didnt see it coming. I just felt swamped by the sadness and helplessness of it all. It was like walking down a long dark tunnel with no idea where it would come out. I couldnt sort out the problems, it all felt too much and then one day I woke up (yes its always worse in the mornings) and paracetamol seemed like the only solution. It took me a while to sort my head out.and claw my life back. It takes much more courage than I had appreciated and you have to do things that you dont really want to, There is always a choice.

 

[Dutchman]

I didnt see it coming. I just felt swamped by the sadness and helplessness of it all. It was like walking down a long dark tunnel with no idea where it would come out. I couldnt sort out the problems, it all felt too much and then one day I woke up (yes its always worse in the mornings) and paracetamol seemed like the only solution. It took me a while to sort my head out.and claw my life back. It takes much more courage than I had appreciated and you have to do things that you dont really want to, There is always a choice.

Oh canary. Where do you find such courage? You’re a very special person and I take comfort that you are able to tell me all this. Isn’t it awful that mornings can be the worse time, for me at the moment the whole day of emptiness. Bless you.

 

[canary]

Im not a very courageous person, Dutchman, but I am a very suborn one lol!

 

[Dutchman]

Hi @Dutchman - I've read a few of your posts and I just wanted to pop up and say I'm so sorry it's been such a roller coaster, and I'm really glad you're reaching out and getting help.

What's so very, very evident is how much you love your wife and for what it's worth, having read your posts I have no doubt you've done the right thing, as hard as it's been for you. My mum is my dad's 24/7 carer and I hear SO much of her when I read your posts - the feelings of loss and guilt and the struggle and everything else that comes with it. So much so that I might send her a few of your posts (and all the wonderful responses from this community) to show her that she's not alone in this (even if she feels like she is!). I am desperate for her to have some quality of life, a break from the relentless day-to-day caring so what time she does spend with Dad as good as possible and isn't just clouded by the struggle.

(You write so eloquently and so thoughtfully. Perhaps one day in future, if you wanted to, I wonder if you'd think about writing and sharing your experience. I don't mean now, as I know there's too much going on emotionally. But maybe one day when you feel everything is settled enough and you had a few spare hours in between visits to your wife. It would probably be the kind of thing that would help so many others. I only think of it as I'm a phone befriender via Friends of the Elderly (until that program shut down. But I still chat to the lady I was paired with) and she went through a period of substantial loss. We would talk and I think it made her feel better to share her story. We actually ended up recording her family story and it's all saved and she'll give it to her granddaughter one day when her granddaughter's old enough. Maybe it will be too painful and the last thing you want to do, and if so, apologies.)

Either way, please always take help if it's there (that's what my Friends of the Elderly lady tells me all the time!). All best to you and yours.

All I would say at the moment is that be very careful before placing anyone in a care home. The loss of the role of carer has hit me hard no matter how bad it was and my life is empty of my wife. I dont mean for that to be negative. For some people a care home is the ideal solution. For others like me my ideal solution would have been to care at home but I found I couldn’t cope. Anyway you know all this from my posts.

 

[Dutchman]

I’ve gone to bed after watching a movie with my family. I don’t want to go home and thought of going back to our empty house terrifies me. And I’m going to see my wife tomorrow at the home and that worries me as well because I don’t know how I’ll find her. Whether she’ll be upset, calm, anxious. I’m already experiencing stress pains just thinking about it.

I feel out of control to be honest and I can’t remember the last time I felt normal. Even when my wife was at home being upsetting with her dementia I didn’t feel this bad.

 

[Larker]

I’ve gone to bed after watching a movie with my family. I don’t want to go home and thought of going back to our empty house terrifies me. And I’m going to see my wife tomorrow at the home and that worries me as well because I don’t know how I’ll find her. Whether she’ll be upset, calm, anxious. I’m already experiencing stress pains just thinking about it.

I feel out of control to be honest and I can’t remember the last time I felt normal. Even when my wife was at home being upsetting with her dementia I didn’t feel this bad.

Dutchman I am sorry you are feeling bad tonight. I am sure we are all the same experiencing good days and bad days. I truly hope tomorrow is a better day for you. Big hugs

 

[Dutchman]

I’m not going home today as my daughter has said I’m in no state to drive back to Devon. I didn’t get any sleep last night and had this awful tenderness in my arms all night which is produced when I think anxious thoughts which is most of the time.
Does anyone else have similar feelings to these? My doctor is unable to determine what they are.

 

[Bunpoots]

Hi @Dutchman

A friend of mine whose relationship has just ended and is facing probable redundancy has been having pains similar to those you describe in her shoulder and legs. Her doctor thinks it’s down to stress. He can’t find any physical cause.

I’m glad you’ve got your daughter looking out for you.

 

[Wifenotcarer]

Dutchman, as you know I am just a month ahead of you in adapting to OH being in a care home. I read on your thread many people saying that it is normal to feel really bad at this time, but for me it has not been too bad - upsetting YES, but devastating NO.

However I do relate to what you are experiencing. When my beloved, wonderful Father (the last of that generation to go) died unexpectedly and a month later I was made redundant at work, I plunged into the depths, into a very dark place indeed. Spending too much time 'home alone' with my thoughts and suffering many physical symptoms. I had the pins and needles in my limbs just as you describe, terrible recurring migraines, shortness of breath, rapid heart beat. I thought I was going to die and to be honest, I did not care if I did. Anything, even suicide would have been preferable to the way I felt.

However my daughters and husband ordered me to the GP who referred me to a psychologist, who diagnosed acute depression. I had some counselling and medication, forced myself to attend college to get a batch of certificates for the sake of my CV and eventually got another job and returned to 'normal' although I am and will be on antiDs for the rest of my life.

Dutchman, if you are still with me, I am trying to say that your extreme reaction to this life changing event is not "normal" or par for the course. You are ILL, you are having what used to be called a nervous breakdown. Because it is an illness, it can be treated but you cannot do it yourself - you need medical help. You do need to work at it yourself too - setting yourself targets of things you must do, baby steps first and bigger challenges later. If you cannot countenance doing it for yourself remember that your Daughter, having more or less lost her mother, needs YOU, her Dad and your wife still needs your support, someone looking out for her best interests. You have proved that you are a strong and caring man, tending to your loved one's needs for so long but now it is time for YOU to seek the medical help and support which you deserve.

 

[Dutchman]

I phoned the home and an entertainer is currently there. My wife is being entertained and I’m here feeling rubbish. She has another UTI and I wonder if she’ll ever be free of them.
If I don’t convince myself that I need to get myself well, that I need to concentrate on me now, then I’m going to be really ill and I’ve now got nobody at home to look after me. I need to be really careful.

 

[canary]

If I don’t convince myself that I need to get myself well, that I need to concentrate on me now, then I’m going to be really ill and I’ve now got nobody at home to look after me. I need to be really careful.

Yes, absolutely. The first step is to want to get better. Not just in a wishy-washy wouldnt-it-be-nice-if kind of way, but an Im-going-to-make-it-happen way. It wont happen overnight, but make a start.