Feel like a prisoner

[Casbow]

My husband has really dipped down this last three weeks. Just as i got a dear little rescue dog Davids condition has got really so much worse. If anyone visits (be it family,friends repair man, window cleaner, Davids just turns nasty and very bad tempered making me feel terrible and spoiling any chance of my having a bit of company. When we go out (if he will) he turns on people and shouts at them. Cannot go to bowls club anymore as he will not stay and keeps walking off. He will not come back and I have to give up and bring him home. He has known these people for 16 years and will not acknowledge them. The voices (in his head) are getting worse and he shouts out loudly in the garden so that I know the neighbours can hear. Today he has wet himself 3 times and also had a big problem having his bowels open. The SW has been with people from the Dementia unit, and we now have an appointment in 10 days time to see specialist. I am desperate for company and to go out with so much worry. It is so bad now that I have hardly been out at all. I try to walk this poor little dog everyday but the walk ,if it happens, is quite short as David says he wants to go but then is very difficult. I just see only misery for the future and struggle to keep my patience.xxx Sorry to go on.x


ce

 

[Scarlett123]

I just see only misery for the future and struggle to keep my patience.xxx Sorry to go on.x

Absolutely no need to apologise, and you are not "going on" - you're simply telling it how it is. And, at the moment, it isn't good. When our loved ones are on a plateau, whatever stage they are at, things are easier to deal with. We know where we stand, and what works and what doesn't.

But when they deteriorate, especially when it's sudden, it makes things so difficult. I am sad that your new little puppy is not able to get his walkies, because that would get you out too, and you sound as if you desperately crave company. Does David go to a Day Centre at all? If he did, even if only for a few hours a week, it would at last give you a window to get out.

I can remember how I cringed when John started shouting at me in the garden, knowing all the neighbours could hear, especially when he accused me of numerous affairs, and of hiding his things so that I could make him think he was mad.

So, when he was next at the day centre, I went and knocked on the neighbours doors, two properties each side, and explained John's condition. They were all very sympathetic, but I still felt bad.

I can't write anything to make you feel better, but I'm sending you a big hug. xxx

 

[Lavender45]

Oh Casbow I feel for you. I think I understand your feeling of being trapped. I cannot leave my mum alone otherwise there is panic, distress, aggression and packing to "go home.

Mum is not aggressive to anyone but me which in a way is a blessing, but it means that some people think I'm exaggerating the problem. In theory mum being nice to others means we could get carers in, the reality is she's warned me that if I try that she will wait until my back is turned and she will vanish. I am a terrible daughter because in my head I am thinking would that be so bad? I won't let it happen I hasten to add!

I recently told my cousin that it feels like both mum and I have Alzheimer's, mum may have the disease, but the disease has me trapped and I hate it. I hate hearing from friends about holidays, meals out and just general life happening whilst I sit here guarding a bitter and twisted old lady who cares about no one (her personality traits per dementia so it's not exactly the illness). I have just filled in a carers assessment form and there was a question which asked was I willing to continue with caring. I have ticked yes, but after a pretty vile afternoon and early evening I want to say no I don't want to live like this.

Enough about me. Is there any chance of a new or altered medication for your husband? Is there any chance of respite to give you a break and a chance to regroup? Do you have a social worker if so call him or her on Monday and tell the social worker you cannot care any more. I know you haven't said you cannot or will not care, but the potential threat is more likely to get them moving with help.

 

[Casbow]

Absolutely no need to apologise, and you are not "going on" - you're simply telling it how it is. And, at the moment, it isn't good. When our loved ones are on a plateau, whatever stage they are at, things are easier to deal with. We know where we stand, and what works and what doesn't.

But when they deteriorate, especially when it's sudden, it makes things so difficult. I am sad that your new little puppy is not able to get his walkies, because that would get you out too, and you sound as if you desperately crave company. Does David go to a Day Centre at all? If he did, even if only for a few hours a week, it would at last give you a window to get out.

I can remember how I cringed when John started shouting at me in the garden, knowing all the neighbours could hear, especially when he accused me of numerous affairs, and of hiding his things so that I could make him think he was mad.

So, when he was next at the day centre, I went and knocked on the neighbours doors, two properties each side, and explained John's condition. They were all very sympathetic, but I still felt bad.

I can't write anything to make you feel better, but I'm sending you a big hug. xxx

Thankyou Scarlett. Yes he was in a day centre. For all of 6 weeks. Once a week from 10 til 3. That was March last year. They said they couldn't keep him as he would not sit down, and would not eat or drink . I tried another home where my mum was cared for and they tried once. Said they couldn't keep him because he got out. A visitor let him out.!!!! Now he will not go anywhere without me. And he won't go out much with me. So I'm well stuck. I will phone SW on Monday and if i get an answer (usually an answer phone and she doesn,t ring back,)will see about trying a couple of nights respite. I have well meaning friends and close relatives all saying "you need a break" but it is not that easy. And I feel guilty just even thinking about it.xx

 

[Casbow]

Lavender45

Oh Casbow I feel for you. I think I understand your feeling of being trapped. I cannot leave my mum alone otherwise there is panic, distress, aggression and packing to "go home.

Mum is not aggressive to anyone but me which in a way is a blessing, but it means that some people think I'm exaggerating the problem. In theory mum being nice to others means we could get carers in, the reality is she's warned me that if I try that she will wait until my back is turned and she will vanish. I am a terrible daughter because in my head I am thinking would that be so bad? I won't let it happen I hasten to add!

I recently told my cousin that it feels like both mum and I have Alzheimer's, mum may have the disease, but the disease has me trapped and I hate it. I hate hearing from friends about holidays, meals out and just general life happening whilst I sit here guarding a bitter and twisted old lady who cares about no one (her personality traits per dementia so it's not exactly the illness). I have just filled in a carers assessment form and there was a question which asked was I willing to continue with caring. I have ticked yes, but after a pretty vile afternoon and early evening I want to say no I don't want to live like this.

Enough about me. Is there any chance of a new or altered medication for your husband? Is there any chance of respite to give you a break and a chance to regroup? Do you have a social worker if so call him or her on Monday and tell the social worker you cannot care any more. I know you haven't said you cannot or will not care, but the potential threat is more likely to get them moving with help.

Oh, I so know how you feel about listening to others about holidays etc. A day out would be lovely. A few hours looking around the town would be lovely. I have already been through similar with my mum. She died last February14th. I am ashamed to say that I barely shed a tear.. She wanted to die. And I still had my husband slowly getting worse.Have appointment with a view to reviewing medication. That in itself scares the life out of me. New medication brings new problems. xxxxxx

 

[Lavender45]

Oh, I so know how you feel about listening to others about holidays etc. A day out would be lovely. A few hours looking around the town would be lovely. I have already been through similar with my mum. She died last February14th. I am ashamed to say that I barely shed a tear.. She wanted to die. And I still had my husband slowly getting worse.Have appointment with a view to reviewing medication. That in itself scares the life out of me. New medication brings new problems. xxxxxx

I agree with you about New medication bringing a new set of problems. Learnt that one recently! If it's even the slightest consolation I don't think I will mourn mum, in fact I regularly pray mum will pass soon, awful but I don't just want my life back I need it for both practical and emotional reasons. Life seems very grey and joyless. Oh dear what a misery I'm becoming! xxx

 

[Aisling]

My husband has really dipped down this last three weeks. Just as i got a dear little rescue dog Davids condition has got really so much worse. If anyone visits (be it family,friends repair man, window cleaner, Davids just turns nasty and very bad tempered making me feel terrible and spoiling any chance of my having a bit of company. When we go out (if he will) he turns on people and shouts at them. Cannot go to bowls club anymore as he will not stay and keeps walking off. He will not come back and I have to give up and bring him home. He has known these people for 16 years and will not acknowledge them. The voices (in his head) are getting worse and he shouts out loudly in the garden so that I know the neighbours can hear. Today he has wet himself 3 times and also had a big problem having his bowels open. The SW has been with people from the Dementia unit, and we now have an appointment in 10 days time to see specialist. I am desperate for company and to go out with so much worry. It is so bad now that I have hardly been out at all. I try to walk this poor little dog everyday but the walk ,if it happens, is quite short as David says he wants to go but then is very difficult. I just see only misery for the future and struggle to keep my patience.xxx Sorry to go on.x


ce

Casbow, you need urgent help. You can't continue like this. What happens if you get ill. I wonder if you phoned SW on Monday to see if you can get appointment earlier. Have you anyone around that could help you. Did David have a needs assessment? Please keep asking for help. It is so wrong to expect carers to do everything. From my own experience,I think it is time for organisations to lobby for health care for people who have this awful disease. Carers will become very ill without support. It has happened to me.

Your neighbours are aware so PG they will be supportive.

Please, please don't feel embarrassed. I used to try to get OH not to disturb other people in shops. In the end I gave up and thought he has a right to be here so people could accept it or not.

Virtual support,

Aisling xx

 

[Susan.J.]

Casbow, you need help now, 10 days is too long. You're heading for burnout, if you don't have it already. I'm sure that people understand what's happening with your husband. Is there any respite care you can arrange for your husband to spend time there? Even if it's only for a couple of days?

 

[Casbow]

Thank you all for replying to me. I know I have to try harder to get help. I will try to get the hospital appointment bought forward but this one I've got is classed as urgent.! also I cannot make an appointment for the mornings as sometimes it takes til the afternoon just to get him to get dressed. He has been known to still be in pyjamas at 3.00 in the afternoon.My GP has been good in the past and has been out twice to see us without me asking him to. But this appointment is for the mental health Doctor.Why do things always get worse at weekends and we have to wait before we can do anything. xxx

 

[Susan.J.]

Casbow, you're doing your best. Sadly the health system sometimes lets us down, it just takes time. By what you said you're doing everything possible to help your husband, you need time for yourself though too. It's great you've got a good GP, is there anyone who you can ask for help to care for your husband until the appointment? Even if it's only for a small time each day? xx

 

[pamann]

Hello casbow, so sorry you are going through this awful time, 10 months ago l was in the same position as you, l phoned my Dr and told her l just could not cope anymore, she had told me he needed permanent care a few months previously.
Within 2 weeks he was in respite, as you know he is in a CH. We were bowling 3 days a week, he became very difficult, he thought the other members were cheating on him, he would walk off, so l gave up bowling, l now bowl 5 days a week, the relief was wonderful, l can now have my life back, l have no regrets, think of yourself casbow we only have one life, and must make the most of it while we are here. I still love my husband very much and visit him 6 days aweek, he is now in a safe place, think of yourself, it will not get any better.

 

[teetoe]

Hi Casbow, yes you must get some time to yourself, and with others as you need the company. It is time for you to see the doctor and get him moving on getting help for you. Can you get whoever will assess him, ie GP, nurse to come and see you at home so you don't have to get him ready to go out? Do this for your sake Casbow, you really need this help. Wishing you strength xxx.

 

[Scarlett123]

Thankyou Scarlett. Yes he was in a day centre. For all of 6 weeks. Once a week from 10 til 3. That was March last year. They said they couldn't keep him as he would not sit down, and would not eat or drink . I tried another home where my mum was cared for and they tried once. Said they couldn't keep him because he got out. A visitor let him out.!!!! Now he will not go anywhere without me. And he won't go out much with me. So I'm well stuck. I will phone SW on Monday and if i get an answer (usually an answer phone and she doesn,t ring back,)will see about trying a couple of nights respite. I have well meaning friends and close relatives all saying "you need a break" but it is not that easy. And I feel guilty just even thinking about it.xx

Well if Day Centres are a no-no, you need help now and urgently. And regarding asking for help, I learnt the hard way, that trying to be brave and stoic gets you absolutely nowhere. Unfortunately, it's no good whispering that you need help, you really have to shout to get things moving - well that was the position with my local authority. I know some people seem to get results more quickly. And that's the post code lottery again.

Whenever I spoke about John, I had "cry" in my voice, that I tried to stifle. But one day, I just couldn't, and as soon as I started crying, I couldn't stop - and I got results. I can't remember if John had 7 Social Workers in 5 months, or 5 in 7 months, but I realised that the phrases "we'll phone you back within the hour", or "don't worry, we'll be in touch very soon", came straight from the pages of Grimms Fairy Tales.

In the end, I found the only solution was phoning day after day, hour after hour, and whenever I spoke to someone I cried, and that's when I got some help. What a rotten, lousy and disgraceful position for people to be in.

 

[Rageddy Anne]

Me too....

I was in your position too, just hanging on because I had to, no Social Worker, CPN changing frequently and never doing anything, and no help even to point out if there was any help...There isn't in this part of the world, NOTHING! I rang the LA, was asked if we had the statutory £23000 or so, and when I said yes, but not much more, was told "We can't help you, try the charities".

After several failed attempts to find a Day Centre or Care Home for respite, I heard about a Care Home that had a room available....and a miracle happened, they were kind and supportive, and my husband is there now, on respite, and I am less tired, but certainly not entirely restored, they say it can take months. He will probably stay there, as a resident, but getting a private companion, a man, for my husband was the best I could manage. The companion will continue to see him, otherwise he would rarely get out. I can't walk far any more, knees all worn out.
I hope that you have a miracle too. Sending hugs....

 

[esmeralda]

I'm so sorry you are in such a horrendous situation Casbow, and you too Lavendar. Things sound quite desperate.
Other people have given you advice which I can't add to, but with regards to your little dog I wonder if you could contact the Cinnamon Trust to find someone who would take him or her out for a walk when you aren't able to. I know this doesn't in any way address the wider situation but it seems to me that it's so important for you to have something positive in your life and perhaps this would make you worry less.
Love and a big hug. Es
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Casbow]

You are all so kind and helpful. I am just not good at pushing people as I am not a very confident person and frightened I'll get my words wrong. Anyway I have decided to phone the dementia unit to see if they can offer me an appointment sooner. I don't think they will so then I will ring Doctors surgery to say I am getting desperate for a break and also that David is becoming much more difficult in every way. Having said that this morning he has been much nicer and had a shower (the first for 4 days). He is quietly playing with his bits of metal and plastic. But I do not know when he last had a wee. I keep asking him but he cannot "go and try" anymore. He just suddenly says "Where's the toilet". Had his urine tested last Monday and it was clear then. Oh dear.! xxx

 

[Scarlett123]

You are all so kind and helpful. I am just not good at pushing people as I am not a very confident person and frightened I'll get my words wrong.

I learnt that whenever I had a Very Important Call to make, I'd write down my "script" first. I also made sure I had some answers to questions that they'd possibly ask me, and if I couldn't think fast enough, or find my answer, I'd play for time by crying a bit more.

And believe me, that wasn't difficult. I know some folk have great support from their LAs, but they do seem to be in the minority and most carers are just left to get on with it. Disgraceful.

 

[Daisymarguerite]

I so related to your comments and like you I have found the support of TP helpful even though I've only been a member for a short time. Do you have any access to the Admiral nurse who I'm told can give help?
if you were here I would give you a hug and tea and cake. Hang on in there and remember you have the right to be happy and well too. Xxxxx

 

[Scarlett123]

I so related to your comments and like you I have found the support of TP helpful even though I've only been a member for a short time. Do you have any access to the Admiral nurse who I'm told can give help?
if you were here I would give you a hug and tea and cake. Hang on in there and remember you have the right to be happy and well too. Xxxxx

I live in a London Borough that has the highest number of over 65s, and we don't have an Admiral Nurse - only a phone number.

 

[Casbow]

Today has been so different. He has been so much better. Showered (Bit grumpy)Played most of the day with bits of plastic and metal. bought in half the contents of the re-cycling bin. Mostly quiet. I think our little dog is probably a bit fed up of being whistled to. Managed a dog walk at 5.00pm. David wet himself despite me trying to get him to try and go before we went out. Ten minutes after we got home he needed a poo. Lucky escape for me. And so now I'm thinking perhaps I can keep going with things as they are. What makes him so different today. I shall never understand this dementia thing. Tomorrow I will make phone calls. And i need to get to shops. Have to pick my moment.! xxx