Not wanting to leave the house.

canary

Registered User
Feb 25, 2014
25,018
0
South coast
I know that many people with dementia develop a fear of leaving their home, but what about the carers?
I have recently developed a dislike of leaving the house. It started back in the summer when I didnt know what I would come home to if I left OH, but now its just all the time. Im fine if it is within walking distance, but any further and I start to get very anxious. I need to go to the supermarket, but Im worried about having an accident on the way, or not being able to park and wondering what OH will be getting up to while Im gone.........

Is this something that just happens when caring for someone in your own home, or should I try and fight it?
 

Tato

Registered User
Aug 15, 2017
10
0
Oh that's awful for you Canary. I am not a Carer but my FIL was, having lost his Wife 2 weeks ago now. I have to say that he has become somewhat institutionalised, for want of a better word. MIL refused to leave the house, and would not even go into the garden, and because she gave him such a hard time when he did leave the house, even to get shopping and do all the necessary things, he too avoided it. Now she has passed away, he is finding his new found freedom difficult and we are hoping that in time, when things settle down, he will start to venture out more often.

From your post, it sounds as if you are developing some anxiety type symptoms. Have you discussed this with your GP? You may find that some simple counselling may help you which can be arranged by the GP. If you are registered with the GP Practice as a Carer then the Carers Association attached to your Practice can arrange for someone to 'sit' with your OH so that you can attend appointments, go out shopping or even take a break and have a cuppa out somewhere away from the home. Some Carers Associations even give you a one off payment to spend as you like on yourself.

My FIL never took advantage of this system even though we tried so hard to get him to - you need to take some time for yourself and not become unwell, mentally or physically so that you can continue to care for your OH as well as you have been. Definitely go and see your GP and ask for some help with your anxiety x
 

Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
I’m sorry you feel like this @canary
I don’t know what it is - I can only add that I feel much the same, even though mum is in a nursing home. I think maybe it’s years of being responsible for other people - I can no longer let myself do anything that looks remotely ‘risky’ - even going on a train worries me. Have to see daughter next weekend which involves an hour’s journey - am anxious already!!
Hope someone has a good explanation.
All the best
Lindy xx
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
@canary I dont like the sound of that at all. It would be so easy because we get so little time to ourselves but you must fight it. My concern is how I'm going to pick up my turkey from M&S on 23 December. How ridiculous we are boxed into such tight corners.
 

Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
PS I know in my case it’s anxiety and low mood. GP has suggested CBT - maybe that may help you @canary ?
In reply to your question, yes, I think we do have to fight it xx
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Fightings hard though isnt it? :rolleyes: Im not sure I have much fight left in me.
I sounds awful @Lindy50 and @Tato , but knowing that others feel the same makes me me feel less alone

You made me laugh @marionq but actually I have ordered the turkey from the butchers in the village - within walking distance!

I suppose Id better go back to the GP - *sigh* - I hate having to see the GP. I tried antidepressants but couldnt hack the side effects - they brought back all the problems of menopause, hot flushes, night sweats etc etc so I couldnt sleep and ended up exhausted.
 

jugglingmum

Registered User
Jan 5, 2014
7,085
0
Chester
I'm sorry to hear how you are feeling, and do think that going to see your GP to get referred to the mental health service for either counselling or CBT would be a good idea. In my area you get seen within weeks so give it a try.

I do agree you need to try and keep going with things. I always struggled with flying, and then when my daughter was born, I didn't want her to know i was worried, so I made a big effort to distract myself and not think about it and suddenly it had all disappeared, so maybe putting a favourite CD on in the car would help, or a talking book CD, and reward yourself with something at the supermarket (not necessarily food - a cheap bunch of flowers) might help.

I had a bit of a parking nightmare this morning, just couldn't get the vehicle I was in to fit in a parking space - and got it on on 5th attempt (LWB VW camper ) - in the past I would have got all sweaty and stressed but somehow I managed to stay calm ( I do struggle parking this vehicle).
 

kindred

Registered User
Apr 8, 2018
2,937
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Fightings hard though isnt it? :rolleyes: Im not sure I have much fight left in me.
I sounds awful @Lindy50 and @Tato , but knowing that others feel the same makes me me feel less alone

You made me laugh @marionq but actually I have ordered the turkey from the butchers in the village - within walking distance!

I suppose Id better go back to the GP - *sigh* - I hate having to see the GP. I tried antidepressants but couldnt hack the side effects - they brought back all the problems of menopause, hot flushes, night sweats etc etc so I couldnt sleep and ended up exhausted.
Canary, I think this is more common than we realise. I call it prisoner mentality and I am suffering from it badly still even though my husband has been in a nursing home for 8 months. I cannot go more than about a mile and a half from my house without feeling faint and dizzy. Like you, I never knew what I would come home to and my goodness, nearly every time it was a dreadful shock, something horrible to sort out.
I am a mental health professional myself so can sort of take a view of what's on offer. Yes, I think therapy would be helpful, CBT is great for challenging frightening thoughts. In my case, I am going to wait and see. I tell myself there is no real imperative to go very far now so I will see if the anxiety is able to subside in its own time without putting extra pressure on myself to sort it. I think it's helpful to go out for a while when a carer is there so that you know it is relatively safe to go out. It's so hard to relax when we are worried about what is going on back home.
With you all the way, Canary. with love, Geraldine aka kindred.
 

Tato

Registered User
Aug 15, 2017
10
0
Fightings hard though isnt it? :rolleyes: Im not sure I have much fight left in me.
I sounds awful @Lindy50 and @Tato , but knowing that others feel the same makes me me feel less alone

You made me laugh @marionq but actually I have ordered the turkey from the butchers in the village - within walking distance!

I suppose Id better go back to the GP - *sigh* - I hate having to see the GP. I tried antidepressants but couldnt hack the side effects - they brought back all the problems of menopause, hot flushes, night sweats etc etc so I couldnt sleep and ended up exhausted.


They may not have been the particular anti-depressant to suit you Canary. Ask for something else and make sure you are on the Carers Register at your Surgery x
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
I put on my Big Girls pants went to the supermarket. Drove OK and found a space. Got everything on my list and suddenly started feeling panicky, but told myself I was finished and just had to pay for it. Got in a queue and the lady who was paying couldnt remember her PIN and tried several different cards without success. I told myself firmly that it was OK, the lady wasnt doing it on purpose, I could hang on a bit longer and did my breathing exercises, but when the next chap handed over a fist full of vouchers, every single one of which had to be carefully scrutinised and there turned out to be a problem and a supervisor called which turned into a long conversation with the customer I lost it and went into a full-blown panic attack :(:oops:. Not my best moment and I had to calm myself down with a cup of tea before driving home, Got back to discover OH thinking I had left him (dont tempt me!)

Over all, not the best day, but at least I didnt crash the car and I now have shopping, so I dont have to go back for a while.
I consoled myself with a large glass of wine and a chocolate croissant
 

Mitch60

Registered User
Jun 13, 2018
40
0
Hi Canary ...yes I can relate to this too ...it's much easier not to go out. And Bring up the draw bridge !
I can only walk the dogs for short time ...or rush to the shops . I live with my mother and I have to have a sitter to be able to go anywhere .....or I get anxious too ! I even get anxious where there is a sitter . I don't need antidepressants either ....just a breather now and then , day centre is great as mum has a good day and so I try too as well . Take care and I think it's quite a common problem from what I hear x
 

Starbright

Registered User
Apr 8, 2018
572
0
Hi@canary..Well done :):)you did go that’s the important part of your day you got home and you have food in the cupboard :):). It’s a start keep going.
I must admit I do feel like you sometimes and I convince myself we don’t need anything really we can manage.(( I get out my crochet and start hooking)).And hopefully relax. I can’t leave my OH for more than 20 minutes and then only if he is in bed asleep, when I do venture out I’m anxious as he falls a lot.
I’m not much help I’m afraid. Thinking of you (( here’s a hug)) A x
 

AliceA

Registered User
May 27, 2016
2,911
0
I am in a similar position. We have been housebound except for medical appointments since before the hot weather. I had a last minute offer of being taken to the town on Thursday.
I was so out of the habit I could not think what I wanted to do. I just went blank.
I thought of a caged bird who stays in a cage when the door is open.

We went because I felt the offer may not be repeated, it may not!
We went into one shop, my husband had a lovely time picking every thing up and examining it. Progress was slow.
The person who took us saw and offered to stay while I went to the bank. I needed to sort something out I bumped into two friends from the past life.
I was surprised I picked up the the skill of being on my own, I had feared I could lose it.
We returned, having stopped for lunch. There was a glimpse of my real husband as he offered to pay.
We sorted how and he was happy.
He slept once home. I had had an hours respite, the bird in me could fly after all.

We all face this danger, it is difficult for those of us who are unable to leave a person to their own devices.
There are few offers! I think it can just become a refuge at home, we become our own warders.
I certainly do not want to go away at night.
Something similar happened after I had been housebound caring for a child when I was young.
I had to wean myself back. I had to 'relearn' how to feel confident to sit in a cafe and order a coffee.
Then a meal, so on and so on.
Confidence is fragile.

I love the big pants syndrome, mine can be sturdy shoes! Now what would Freud say! Not that I wholly agree with his theories. I prefer Jung.
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Hello, @canary! I think it's honest of you to post about this and fear too many of us can relate; I know I can. I think some of it is exhaustion from caring and always having to be on alert and on duty. I think some of it is anxiety, which also comes with the territory as a carer.

I've had a lot of help from various types of therapy, support groups, meditation and relaxation training, and massage therapy. Other things that help me are exercise and getting outdoors. I appreciate all this is easy to say and difficult to do and it has taken me a long time (years) to get from the state of constant anxiety and tension, to not. I do feel I've lost years of my life to dementia and damaged my mental and physical health in the process. Again, I am sure all too many here can relate.

Not all medications work for each person and this is true of antidepressants, so please bear that in mind. Do what you need to do for yourself. Don't go down with the ship!!

Much love and (((((((((hugs))))))))) to you.
 

kindred

Registered User
Apr 8, 2018
2,937
0
Hello, @canary! I think it's honest of you to post about this and fear too many of us can relate; I know I can. I think some of it is exhaustion from caring and always having to be on alert and on duty. I think some of it is anxiety, which also comes with the territory as a carer.

I've had a lot of help from various types of therapy, support groups, meditation and relaxation training, and massage therapy. Other things that help me are exercise and getting outdoors. I appreciate all this is easy to say and difficult to do and it has taken me a long time (years) to get from the state of constant anxiety and tension, to not. I do feel I've lost years of my life to dementia and damaged my mental and physical health in the process. Again, I am sure all too many here can relate.

Not all medications work for each person and this is true of antidepressants, so please bear that in mind. Do what you need to do for yourself. Don't go down with the ship!!

Much love and (((((((((hugs))))))))) to you.
Oh what a wise and helpful post,Amy. Thank you. It's the constant state of alertness, we can't often stand down. I think the idea to try lots of things is great. And I think lots of us will relate to losing lots of our life to dementia and damaged ourselves in the process. I love it when you said don't go down with the ship. great appreciation to YOU. G kindred.
 

Cat27

Registered User
Feb 27, 2015
13,057
0
Merseyside
Canary I’m sorry you’re feeling so low.
I think, as carers, our world shrinks so much that we almost live in a box & the longer that we are in the box, the harder it becomes to break out.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Thank you everyone for your support. The analogies of the box and the cage are not lost on me. Ive been sitting in this cage for too long........

As you have all pointed out its due to having to be alert all the time and the anxiety that goes with it. While I have been on here I have heard OH moving around upstairs, so another day begins.
 

Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
Hello, @canary! I think it's honest of you to post about this and fear too many of us can relate; I know I can. I think some of it is exhaustion from caring and always having to be on alert and on duty. I think some of it is anxiety, which also comes with the territory as a carer.

I've had a lot of help from various types of therapy, support groups, meditation and relaxation training, and massage therapy. Other things that help me are exercise and getting outdoors. I appreciate all this is easy to say and difficult to do and it has taken me a long time (years) to get from the state of constant anxiety and tension, to not. I do feel I've lost years of my life to dementia and damaged my mental and physical health in the process. Again, I am sure all too many here can relate.

Not all medications work for each person and this is true of antidepressants, so please bear that in mind. Do what you need to do for yourself. Don't go down with the ship!!

Much love and (((((((((hugs))))))))) to you.

Wonderful post @Amy in the US xx
Like @kindred I love what you say about not going down with the ship!
Thank you x
Lindy xx
 

LynneMcV

Volunteer Moderator
May 9, 2012
6,112
0
south-east London
I am sorry you are feeling like this @canary

As you have seen, many of us seem to be subject to these feelings to some extent during our caring years and beyond.

I certainly remember the underlying panic I felt in the earlier years, never quite knowing what I would find on returning home. That panic was eased to a great extent by the fact that I was allowed to work more and more from home – but of course, in its own way, that also made me increasingly reluctant to leave home too.

I was lucky in that, for a good few years, I was able to attend a variety of groups and outings with my husband, so our lives remained enjoyable, sociable and stimulating. However, as the disease progressed it became increasingly difficult to get out and about. Even though my husband eventually attended a day centre two days per week I could never relax enough to go out to make the most of the ‘free-time’ because I was always worried that something would happen and I would need to get back quickly – and so my free time became mainly home-based too.

Fortunately, I did not reach the stage of full-on panic attacks and I am so sorry that you are having these, they sound totally awful and debilitating.

As others have advised, I hope you will consult with your GP – and I truly hope he/she has some useful advice, support and signposting to offer which will give you a positive way forward and help build your confidence back up again.
 

Feistywoman

Registered User
Aug 11, 2018
108
0
@canary so sorry to hear you are feeling like this. Until I’ve experienced it myself I could never have anticipated the toll this horrible disease takes on the mental health of carers....there are days I feel like a gibbering wreck. Hope that you can manage to see some light, lots of super support and advice on here, take care.
 

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