• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Dementia’s journey

Dutchman

Registered User
May 26, 2017
503
Devon
Many thanks all for your reassurances. And for replying so very quickly.

I’m hyper sensitive at the moment having not had much experience of this sort of thing.
So, I’ve been to the doctors and she’s put me on an anti depressant. I’ve come realise that I can’t do it all, take on all the responsibility as I did when Bridget was at home. There’s only so much any one person can take. The care home is registered for challenging behaviour as well as dementia so let them manage it. I pay enough.

Some of my thoughts are about — if I’m not at the home what’s happening with Bridget, then when I go in and see her it’s all one sided and she’s agitated and sitting there and I get restless. I mean, it’s a merry go round of stress. She not settled yet, hopefully she will.

Going to see the home’s doctor later with Bridget and staff to talk about a possibility of her having constipation ( they haven’t seen anything in the weeks she’s been there). Surely they should be checking this? Do I have to do everything?
Thanks once again for your support
 

Grahamstown

Registered User
Jan 12, 2018
1,604
East of England
about a possibility of her having constipation
This is definitely a concern and I had the same problem at home and I had to take drastic action. It was obvious that he couldn’t go when it got blocked. I was a nurse back in the day and knew what to do so they should too. Now I give him a sachet a day of Laxido, prescribed by the doctor which seems to be doing the trick. He can’t tell me and can’t remember so if I don’t see anything I don’t know. I just have to watch for symptoms. The care home should be aware of all this but I hope my experience helps you with information.
 

northumbrian_k

Registered User
Mar 2, 2017
928
Newcastle
Hi @Dutchman, I think that you need to take a step back and let the staff take over the heavy load of caring. It is not easy to do when you have been used to doing everything. At first I used to stress over (often quite little) things but I have learned that there is no point as they are not mine to deal with.

I don't know if my wife is any happier or more content now that she is in residential care but I do know that she is kept clean, engaged, and looked after day and night in a way that she wasn't when she was with me. My wife goes in and out of rooms as if she owns them. She has also shown some interest in the one man on her floor then tells me that he is a 'horrible man'. It is all part of the "dementia experience" (maybe that could be a new fairground attraction!).

I am sure that the staff in your wife's home have seen all her behaviours before. They are unlikely to be fazed by them. If she is agitated and seems unsettled when you go to see her, think back to when she was at home. I am sure that there were times when she was agitated then too, but the difference was that you were the one who had to deal with it all of the time. Your caring role hasn't ended but it has changed and you need to give yourself time to adjust.

Put some time aside for yourself. Do something that you enjoy and missed doing because caring got in the way. You deserve it.
 

Dutchman

Registered User
May 26, 2017
503
Devon
Hi @Dutchman, I think that you need to take a step back and let the staff take over the heavy load of caring. It is not easy to do when you have been used to doing everything. At first I used to stress over (often quite little) things but I have learned that there is no point as they are not mine to deal with.

I don't know if my wife is any happier or more content now that she is in residential care but I do know that she is kept clean, engaged, and looked after day and night in a way that she wasn't when she was with me. My wife goes in and out of rooms as if she owns them. She has also shown some interest in the one man on her floor then tells me that he is a 'horrible man'. It is all part of the "dementia experience" (maybe that could be a new fairground attraction!).

I am sure that the staff in your wife's home have seen all her behaviours before. They are unlikely to be fazed by them. If she is agitated and seems unsettled when you go to see her, think back to when she was at home. I am sure that there were times when she was agitated then too, but the difference was that you were the one who had to deal with it all of the time. Your caring role hasn't ended but it has changed and you need to give yourself time to adjust.

Put some time aside for yourself. Do something that you enjoy and missed doing because caring got in the way. You deserve it.
Thank you Northumbrian, comforting words and advice.

The care home is what it is and is well run and the staff are hard working and dedicated. Like you I’m not sure if my wife is happier in the home rather than back here. All I know is that when she was here she didn’t eat, wash, change her clothes, was very agitated all the time and wouldn’t spend much time with me preferring to go to bed (fully clothed and dirty). At the end she was pulling wildly at the door to get out.

My wife is still unhappy, but I believe perhaps a little happier more times (I think). She still prefers to keep her clothes on all the time but we managed tonight between us to get her changed into night wear and a fresh pad. Before she was sitting in that all night .

My biggest anxiety I suppose is the nature of the place.
I get very miserable just leaving her there when I decide to leave. Some residents are constantly wanting to go ‘home ‘ and constantly vocalising this need to the staff. How the staff keep their patience I do not know! My wife also tries to explain quietly to me ways that we could go ‘home’ and I’m always saying no we’re not going anywhere and this adds to her frustration. I mean, if it was me, I wouldn’t want to be there either! So round and round I go, guilt frustration, stress etc.

So I’m home now and feeling a bit wretched. It’s 4 weeks since she’s been there. Early days everyone keeps telling me.
 

Rosserk

Registered User
Jul 9, 2019
391
I’ve had a terrible day today. We went out this morning to a local cafe with a home staff member but my wife eats nothing. Go back to the home ok.
I then have to go out to sort out stuff and said I’d be back tea time which I do . My wife is now begging me to take her home, the staff are getting frustrated because she won’t eat anything, I can’t leave she’s holding my hand tight and to cap it all one of the residents who is overhearing me talking to my wife calls me a dirty *******. I know this women has probably dementia but there’s only so much I can take so I report this to the home manager and leave very upset.

I cannot cope with this and I don’t see any alternatives that will keep me from a complete nervous breakdown apart from my wife dying and that’s an end to it. Sure I’d miss her but she’s gone already plus the stress of the other residents in the home. I wouldn’t like to be living there so why would expect my wife to be happy to be there.

Dutchman I’ve been reading your posts and was waiting for you to say it and you finally answered your own problem. The following is not meant to sound harsh so please don’t let anything I say upset you x

To all intents and purposes your wife has gone.
You can’t make her happy whatever you do it won’t make you or her feel better. I think you need to stay away for a while and recharge your batteries. Your wife will settle and eventually get into a routine and you can then resume your visits. She will begin to recognise the care workers and they will be more familiar to her than you are and you should will that to happen.

You can phone the care home daily if you must and I’m sure they will tell you she’s fine. When you do visit try and visit the same time of day so both you and her can get into a routine. At the moment you are torturing yourself for something that is completely out of your control and you can’t make it better so you need to stop trying it’s clearly making you ill and it’s not sustainable. You still have a life and I’m sure your beautiful wife wouldn’t want you to carry on punishing yourself, so tell yourself that and believe it. Big hugs xx
 

Dutchman

Registered User
May 26, 2017
503
Devon
Dutchman I’ve been reading your posts and was waiting for you to say it and you finally answered your own problem. The following is not meant to sound harsh so please don’t let anything I say upset you x

To all intents and purposes your wife has gone.
You can’t make her happy whatever you do it won’t make you or her feel better. I think you need to stay away for a while and recharge your batteries. Your wife will settle and eventually get into a routine and you can then resume your visits. She will begin to recognise the care workers and they will be more familiar to her than you are and you should will that to happen.

You can phone the care home daily if you must and I’m sure they will tell you she’s fine. When you do visit try and visit the same time of day so both you and her can get into a routine. At the moment you are torturing yourself for something that is completely out of your control and you can’t make it better so you need to stop trying it’s clearly making you ill and it’s not sustainable. You still have a life and I’m sure your beautiful wife wouldn’t want you to carry on punishing yourself, so tell yourself that and believe it. Big hugs xx
Wise words indeed. Thanks for encouragement.

Doctor saw me today because I needed some more sleeping tablets and straight away she recommended anti depressants. My daughter is dead set against such stuff, says it masks the depression and it’ll come out later. I was initially pleased to have something that would help, now I have an element of doubt cause by my daughters concern.

Anyone else have experience of this medication?
 

Rosserk

Registered User
Jul 9, 2019
391
Wise words indeed. Thanks for encouragement.

Doctor saw me today because I needed some more sleeping tablets and straight away she recommended anti depressants. My daughter is dead set against such stuff, says it masks the depression and it’ll come out later. I was initially pleased to have something that would help, now I have an element of doubt cause by my daughters concern.

Anyone else have experience of this medication?
Take the medication and get back control. You aren’t well you can’t keep ignoring it! I have been in antidepressants and they worked brilliantly as long as you follow the doctors advice when you’re more able to cope you can stop the medication in a controlled way. Millions of people successfully take antidepressants x
 

canary

Registered User
Feb 25, 2014
11,365
South coast
Ive taken anti-depressants too and it just takes the edge off it all so it makes it easier to cope while I was healing.
No-one worries about taking paracetamol for a headache. If its OK to mask physical pain, why is it different for mental pain?
 

Dutchman

Registered User
May 26, 2017
503
Devon
Ive taken anti-depressants too and it just takes the edge off it all so it makes it easier to cope while I was healing.
No-one worries about taking paracetamol for a headache. If its OK to mask physical pain, why is it different for mental pain?
Great. It’s good to hear from those with experience. With something to help it give hope for a less stressful time.

Many thanks everyone
 

White Rose

Registered User
Nov 4, 2018
357
Thanks for your kind and quick reply. I’m encouraged by all you kind people who say that I will feel differently and better, just give it time. Perhaps I will dig my old bike out take it for a ride. Get out of breath, get myself tired, worth a try.

Time has moved slowly before me. It’s only 4 weeks since she moved out now but seems more like 4 months. Nothing else enters my thinking so perhaps I need even more distractions.anything that me chance of a moment of stress freedom.
That's the spirit, I hope you've managed to get out on the bike and enjoy the lovely weather. 4 weeks is such a short time for such a big adjustment, hopefully you'll feel a bit more positive in a few months time.
 

White Rose

Registered User
Nov 4, 2018
357
Bike is a great idea. As you know, Dutchman, I have been through this. At first, whatever you try for a distraction, nothing really works but the important thing is to do it. The distraction will begin to get a bit more of a habit and you build it up from there. I don't think we wake up one day and feel different. Oh I wish, believe me. Yes, get tired. I work and I volunteer and I get myself too tired to think. I know, Keith was the only man I can ever imagine loving and I'm not after another relationship. I get it. Stay with the fact you can see your wife and please don't try to anticipate a terrible future. Whatever happens, whenever it happens, the lovely folk on this forum will see you through, as they have and do me. with love, Kindred.
Lovely words Kindrid and certainly this forum is such a godsend, struggling through this horrendous period of our lives would be impossible if we had to do it alone. Just knowing that others have been, or are going, through it gives you a little strength.
 

Dutchman

Registered User
May 26, 2017
503
Devon
Lovely words Kindrid and certainly this forum is such a godsend, struggling through this horrendous period of our lives would be impossible if we had to do it alone. Just knowing that others have been, or are going, through it gives you a little strength.
Well said. When I do get my life back together again I hoping to participate more in supporting you wonderful TP’ers. You are supporting me wonderfully and I’ll alway be extremely grateful. It’ll still be needed I’m sure But I will be there for as many as I can..promise.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Wise words indeed. Thanks for encouragement.

Doctor saw me today because I needed some more sleeping tablets and straight away she recommended anti depressants. My daughter is dead set against such stuff, says it masks the depression and it’ll come out later. I was initially pleased to have something that would help, now I have an element of doubt cause by my daughters concern.

Anyone else have experience of this medication?
Yes I have been on these for 20 years due to having had Mini strokes over 20 years ago. Depression is a chemical imbalance in the brain which can be brought on by many outside or physical issues. Medication doesn’t mask issues, it helps even the imbalances & this you are able to deal with the issues from an even playing field.

Don’t worry you won’t become dependent, these aren’t the drugs issued back in the 1960’s, but gently help balance
 

Rosserk

Registered User
Jul 9, 2019
391
Well said. When I do get my life back together again I hoping to participate more in supporting you wonderful TP’ers. You are supporting me wonderfully and I’ll alway be extremely grateful. It’ll still be needed I’m sure But I will be there for as many as I can..promise.
Well done Dutchman you would be missed if you disappeared! I’m new here and reading your posts have inspired me to keep reading the brilliant advice.

Have you decided what your going to do? Are you going to try done tablets and try and take some time to yourself? X
 

Helly68

Registered User
Mar 12, 2018
547
Just to say, my mother has hit staff and residents, unfortunately. Though the care home have to inform me, I think we are all still resolved towards keeping her there. I am surprised how hard the home are trying - I think the staff are sadly used to agitation. I also found,t hat whilst Mummy had "lashed out" she had been approached by another resident, who, believing himself to be a carer, tried to "help" her. Though it doesn't excuse her kicking him (though she has no idea of what she has done) sometimes talking to the staff gives you a better idea of what happened which can help everyone avoid future issues.
I always dread getting phone calls, because I fear her being asked to leave the home but I now try to keep calm (I had begun to jump every time my phone rang) and found counselling very helpful.
 

Dutchman

Registered User
May 26, 2017
503
Devon
Just to say, my mother has hit staff and residents, unfortunately. Though the care home have to inform me, I think we are all still resolved towards keeping her there. I am surprised how hard the home are trying - I think the staff are sadly used to agitation. I also found,t hat whilst Mummy had "lashed out" she had been approached by another resident, who, believing himself to be a carer, tried to "help" her. Though it doesn't excuse her kicking him (though she has no idea of what she has done) sometimes talking to the staff gives you a better idea of what happened which can help everyone avoid future issues.
I always dread getting phone calls, because I fear her being asked to leave the home but I now try to keep calm (I had begun to jump every time my phone rang) and found counselling very helpful.
Well done Dutchman you would be missed if you disappeared! I’m new here and reading your posts have inspired me to keep reading the brilliant advice.

Have you decided what your going to do? Are you going to try done tablets and try and take some time to yourself? X
I tried to go and stay at a carers meeting today hosted at our local pub. They were all looking after their OH at home to some degree or other. I couldn’t stay long as I think it’s all a bit too soon for me sharing their problems. Next month I’ll try again.

This afternoon I went to the home and we went, just the two of us, to a local cafe. That went well. When we went back to the home my wife leans over to me and starts again in lowered voice repeatedly asking....now if we do this, and what we could do...it’s all the jumbled wrong words but basically she’s working out how to get out with me, to escape. It’s driving me crazy because it spoils my visit and I sometimes dread going if she’s going to be like this. But I can’t blame her because the place gets on my nerves too sometimes.

Yes I’m taking the tablets and yes I’m trying to have some time to myself. Thank you, bless you all.
 

Rosserk

Registered User
Jul 9, 2019
391
I tried to go and stay at a carers meeting today hosted at our local pub. They were all looking after their OH at home to some degree or other. I couldn’t stay long as I think it’s all a bit too soon for me sharing their problems. Next month I’ll try again.

This afternoon I went to the home and we went, just the two of us, to a local cafe. That went well. When we went back to the home my wife leans over to me and starts again in lowered voice repeatedly asking....now if we do this, and what we could do...it’s all the jumbled wrong words but basically she’s working out how to get out with me, to escape. It’s driving me crazy because it spoils my visit and I sometimes dread going if she’s going to be like this. But I can’t blame her because the place gets on my nerves too sometimes.

Yes I’m taking the tablets and yes I’m trying to have some time to myself. Thank you, bless you all.
Why not try and stay away just for a day to recharge your batteries it really is ok your wife will be safe. People with dementia have no concept of time she won’t remember when you were last there. You really do need a break from everything x
 

canary

Registered User
Feb 25, 2014
11,365
South coast
Im glad you had a nice time at the cafe and managed to do something together.

With regard to her trying to escape - dont forget that she was doing that when she was at home with you.
Im sorry to say this, but she is almost certainly not asking to go back to your home. She will be trying to escape from the confusions of dementia, although she doesnt understand what is happening. Mum did this - she would say "Lets go - lets get out of this place" and she thought that by going somewhere else she would leave the dementia behind. But, of course, she just took it with her, so everywhere she went, she wanted to be somewhere else.
 

SingsWithPugs

Registered User
Sep 17, 2019
15
Yesterday was a big day for us too. 6 week review at Care Home with Social Worker, Key worker, Manager and Me. OH sound asleep in his chair. The home are very happy and feel OH has settled well. They feel it is time for me to try taking OH out of the home which I have been reluctant/scared to do in case he refuses to return. They think he will be fine.

Like you I had to sign the 'contract' agreeing to the terms and conditions and to paying the home. By coincidence, the first bill for the Home arrived in the post in the morning it was £££££ because it covered the first 6 weeks. With it was the bill for the 2 weeks respite he had back in April - more ££££. I have set up a Direct Debit for future payments from the account where OH's savings and income go and see that at this rate we will be self funding for approx 18 months. I realised that if the charges rise money will run out sooner but that is not worth worrying about as inevitably it will all be gone, sooner or later, and the Council will take over the payments.

I'm content that he is where he needs to be, but felt like a traitor signing away his freedom. Was also a shock when our Social Worker said goodbye as we are no longer on her caseload. A day of very mixed emotions.

Are you in the UK? From what you are saying, does this mean that in the UK you have to use up all your savings before the government will pay for a care home?
 

Staff online

Forum statistics

Threads
112,767
Messages
1,651,780
Members
63,140
Latest member
Desire IHaveForMama