Dementia’s journey

[Dutchman]

We’ve had a walk to the town but I’ve made my excuses and returned home. The town is so busy, full of normal goings on, the shops are full and even Waterstones doesn’t interest me any more.

I could put up with most things if it wasn’t for these pains I feel all the time. It must be adrenaline, like when have a small shock e.g a car nearly misses you. The shock of reality has hit me.

Everyone says I should do this or that. Get a dog or cat. If I can’t get interested in a book there’s little chance for a pet. I used to have two cats but both gone now.

I seem to live on this forum now hoping for some kind of small release from the misery of grieving for my wife. It’s almost like the past few years haven’t happened and I was always her husband and not her carer. The mind plays tricks and creates havoc with your emotions.

 

[kindred]

We’ve had a walk to the town but I’ve made my excuses and returned home. The town is so busy, full of normal goings on, the shops are full and even Waterstones doesn’t interest me any more.

I could put up with most things if it wasn’t for these pains I feel all the time. It must be adrenaline, like when have a small shock e.g a car nearly misses you. The shock of reality has hit me.

Everyone says I should do this or that. Get a dog or cat. If I can’t get interested in a book there’s little chance for a pet. I used to have two cats but both gone now.

I seem to live on this forum now hoping for some kind of small release from the misery of grieving for my wife. It’s almost like the past few years haven’t happened and I was always her husband and not her carer. The mind plays tricks and creates havoc with your emotions.

Dutchman, I so understand. I'm glad the forum is here for you. Dutchman, your wife is alive. Keith is not. You can still see her, touch her, feel her skin. Please make the best of what you can now. Please.
warmest, Kindred.

 

[Dutchman]

I feel I’m being very selfish spending so much time on the forum unloading my feelings. All you wonderful posters are so supportive and one way or another know what feelings and emotions dementia causes.

thank you Kindred.

I’m going back home tomorrow to first see my wife and then to the house. I haven’t seen her now for 3 whole days and I hope she’s ok. I’ll phone the home before I arrive.

 

[Izzy]

You’re not being selfish @Dutchman. This is the very place to share your feelings. You know that members understand your emotions and it’s good to share here.

 

[jugglingmum]

You are not being selfish posting here. We are hoping we can help you in some small way.

If you have somewhere you can walk for a hour or so everyday that might help. The physical symptoms of stress are often relieved by the chemicals released by exercise.

 

[Dutchman]

Thanks for the reassurance. I seem to live on here at the moment, but it’s great to have feedback.

The stress physical symptoms are mainly these burning, sensitive, tingling feelings in my arms and hands. These are present when I have all the thoughts about my wife, the care home, loneliness, which is more or less all the time. If I could somehow eliminate these physical feelings I could cope better. I feel ill with it and that worries me having no one at home. I can’t be at my daughters forever. At least it’s Sunday tomorrow and no rush to go anywhere. Want to be back in Devon about 15.00.

The trick would be not to have such negative thoughts. If only I could somehow not have them, perhaps be angry instead, not miss her quite so much and be pleased she’s being looked after. It’s like I’m out of control and the last morning I didn’t dread getting up was many weeks ago. How am I suppose to drive 4 hours tomorrow when I’m like this.

 

[Fishgirl]

Oh Dutchman, please don’t feel you’re being selfish, I haven’t been on the forum very long but I feel as though I’ve made a whole new set of friends, that I can be completely honest with and not feel like I’m being judged! And your posts in particular, as sad as they make me feel for you, have made me realise that I have to make the most of the good times hubby and I still occasionally have that I probably would have let slip away if it wasn’t for you. I wish you well and hope you can start to feel a little better soon.xxxx

 

[canary]

Body and mind are more interconnected than people imagine. The physical symptoms are almost certainly the result of stress. Physical exercise releases chemicals that improve your mood and lessen the negativity. When we all say that going for a walk will help, we dont just mean that it will take your mind off things.

 

[jugglingmum]

You need to work at things slowly slowly, a little exercise will calm the body down physically.

This might not be your thing but take a few minutes to step outside and study a leaf, ideal time of year, when the colours are changing - look at the veins and the structure of the leaf, this will help focus you brain on something else, and also helps with the chemical balance in your brain. Other things I find work are the moon with clouds going over it at night, and clouds in the day if there is blue sky to form cloud shapes.

Other things I have also found effective are stretching one finger out at a time, until the whole hand is stretched out, then the same with the other hand, then consciously allow the fingers to relax. I used this technique, with my hands under the pillow (as this is my sleeping position) to get some sleep after my son was stillborn in the first few days/weeks of intense grief, it didn't always work but it did enough to let me get a few hours sleep.

Things will only get better very very slowly at first.

 

[Dutchman]

I’ve just arrived home after 4 hours on the motorway. It’s 13.00 and I’m going to see my wife at 16.00 for teatime. I’ve checked, she’s ok, just not eating dinner.

How I got home is a miracle. I had a panic attack on the M5 and nowhere to pull over. I just had overwhelming feeling of guilt and kept saying sorry to her and crying. Not till the service station did I calm down. Perhaps next time I’ll go by train.

Everyone has suggestions. Get a dog, get a cat, join this or take up that. I cannot even think of motivating myself. If my cat hadn’t died two days after my wife went into the home he’d be curled up on me now.

Going to my daughters was great but it comes with consequences. Their family reminds me of my loss, I feel a bit of a burden but they say come up anytime. Plus the journey back increases my anxiety because I’m going back to a house not a home.

It’s 3 whole days since I’ve visited my wife and I’m always apprehensive to what I’ll find.

 

[Jaded'n'faded]

I’ve just arrived home after 4 hours on the motorway. It’s 13.00 and I’m going to see my wife at 16.00 for teatime. I’ve checked, she’s ok, just not eating dinner.

How I got home is a miracle. I had a panic attack on the M5 and nowhere to pull over. I just had overwhelming feeling of guilt and kept saying sorry to her and crying. Not till the service station did I calm down. Perhaps next time I’ll go by train.

Everyone has suggestions. Get a dog, get a cat, join this or take up that. I cannot even think of motivating myself. If my cat hadn’t died two days after my wife went into the home he’d be curled up on me now.

Going to my daughters was great but it comes with consequences. Their family reminds me of my loss, I feel a bit of a burden but they say come up anytime. Plus the journey back increases my anxiety because I’m going back to a house not a home.

It’s 3 whole days since I’ve visited my wife and I’m always apprehensive to what I’ll find.

I'll declare my interest as a Mad Cat Woman first, but...

I'm guessing that you are mourning for your late cat as well as your wife going into care. As you say, otherwise kitty would be curled up on your lap, giving you some comfort...

A year and a half ago I lost my last cat to arthritis. There were 3 deaths within close family and my mum was pushed over in her CH and broke her hip. It was a desperate time and I could see only clouds and darkness. I knew I couldn't change the things that had happened/were happening but I was determined to put some joy back in my life. So I got Roly (the top one in my profile pic.) And it absolutely worked There is something about a kitten that just makes you feel happy, whether you want to or not! It is impossible not to smile at their antics and when they curl up purring on your lap it is more powerful than any amount of anti-depressants or counselling...

I know you like cats and a kitten is not much trouble. I also know you're looking for things to do with your days, so why not take a trip to your local cat rescue centre/RSPCA and take a look at some kittens who need a home and someone to love them...?

It's not a solution but I can guarantee it would put some smiles in your day. And you really need that.

 

[Dutchman]

Just come back from the home. My wife has slapped a resident for sitting in her chair. That’s all I need is trouble from residents families.

 

[canary]

I shouldnt think that you will get trouble from the other residents family. We are all in it together and we all know that it could be our relative misbehaving next time The care home is duty bound to inform you, but they are probably not too worried. Was your wife sundowning at the time?

 

[Moggymad]

Slapping & punching happens in mums care home mostly the same two residents. Everyone understands it is part of the dementia. My sister got thumped in the face recently by one of the 'two' & was very upset by it as it was sudden & unexpected, as she came in the door. A safeguarding report was raised by the manager. The resident was seen by CPN as there had been other incidents & whether or not they tweaked her meds I don't know but she has been calmer since. One resident has his own seat that staff make sure no one else sits in as it will be a trigger for confrontation.

 

[Lyd]

Yes I’m trying counselling but after two sessions nothing has made much difference. She just sits listening to me but nothing has shifted. I still feel wretched and hopelessly emotional about losing my wife, guilty I’ve left her there, I feel abandoned myself and unable to connect with any positive way forward. I know it’s early days but I cannot see how length of time will change anything.

My lovely house means nothing to me now because my wife will never walk on these carpets again, never sleep in our bed, never walk in the garden. What’s the point of it all when she’s not here. She’s dead but not dead and I’m not sure how much longer I can go on. And if I don’t go on then there’s no one to support here when she’s in the home.

Not sure I can be helpful or not. I dont think there are words to speak to your loss. however, i am a therapist by trade and two sessions isnt enough for you to know if counselling will work or not. Try and give it a go and talk to them about feeling nothing is changing. I think the idea of getting family (and her friends too) to support is a good one. I think it probably helps to be both realistic about what they can do and specific about how you would like them to help and then they will either do it or not. Support in my experience can come from the strangest of places.

 

[Dutchman]

I’m still interested in counselling however the person I saw 3 times charges £80 a session of 50 minutes. I can’t afford that so I’m booked in on the 27th October for a telephone call consultation and it’s free. Also my hypnotherapist costs £65 and I hold out hope there.

The doctor is referring me to our Mental Health team .

I just got to get through tonight and tomorrow morning now

 

[canary]

((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))
Sending positive thoughts

 

[DesperateofDevon]

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

A nervous breakdown is a horrendous experience, having had two last year it is the definitely something that only you can seek help for- start with going to your GP.

 

[maryjoan]

I’m still interested in counselling however the person I saw 3 times charges £80 a session of 50 minutes. I can’t afford that so I’m booked in on the 27th October for a telephone call consultation and it’s free. Also my hypnotherapist costs £65 and I hold out hope there.

The doctor is referring me to our Mental Health team .

I just got to get through tonight and tomorrow morning now

I had counselling last year - this was arranged through Devon Carers, who do my Carers Assessment, accessed the help for me. I was asked to make a contribution to the cost, that I could afford. I ended up paying £15 per session. Perhaps you could make enquiries in this direction.

 

[maryjoan]

I’ve just arrived home after 4 hours on the motorway. It’s 13.00 and I’m going to see my wife at 16.00 for teatime. I’ve checked, she’s ok, just not eating dinner.

How I got home is a miracle. I had a panic attack on the M5 and nowhere to pull over. I just had overwhelming feeling of guilt and kept saying sorry to her and crying. Not till the service station did I calm down. Perhaps next time I’ll go by train.

Everyone has suggestions. Get a dog, get a cat, join this or take up that. I cannot even think of motivating myself. If my cat hadn’t died two days after my wife went into the home he’d be curled up on me now.

Going to my daughters was great but it comes with consequences. Their family reminds me of my loss, I feel a bit of a burden but they say come up anytime. Plus the journey back increases my anxiety because I’m going back to a house not a home.

It’s 3 whole days since I’ve visited my wife and I’m always apprehensive to what I’ll find.

I understand totally your thoughts on the fact that every foray into the 'real' world has consequences - it can be real, as your visit to your daughter, or electronic, as mine was yesterday.

I had sent my brother a small gift for his birthday, and texted him with good wishes, and to see if it had arrived - I asked him what he was doing to celebrate.

He came back with a family meal with children and grandchildren on Saturday, and a packed day out of events yesterday.
At first, I did not realise why my mood had dipped so deeply - because it certainly had.

Then I thought it through.

Saturday - I spoke to the carer, and no one else, as OH does not converse, I tried to get on with some work, but was constantly badgered to play scrabble, rest of the day dull and mundane.

Sunday, repeat of Saturday.

The contrast between life 'on the outside' and life on our terms is absolutely
ENORMOUS - and full of anguish as we worry about our PWD, and our lost love.

And I think even counsellors do not understand that.