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I want to run away every day.

ZZ

Registered User
Feb 16, 2022
10
0
I think every single person on here will recognise this. It is known on here as "Host Mode", or sometimes "Showtiming" and it is the most irritating phenomenon known. When someone with dementia meets someone that they dont see very often, especially relatives and authority figures (doctors, nurses, police etc) they can suppress their dementia symptoms. It takes a lot of effort (so they are tired afterwards) and cant do it for long, but just long enough for the person to say "oh they are not too bad at all" and think that you are exaggerating it all. Then they go away away and you are picking up the pieces of a person with dementia who is tired, extra confused and grumpy.........
It can fool a lot of people - even medical staff who should know better.
This is so interesting to me! Thank you so much, people are kind when they say "oh he looks good/sounded well/sounded ok" but it is a bit like a kick in the teeth. So interesting what you say, I am learning so much from these responses, thank you so much.
 

JaxG

Registered User
May 15, 2021
178
0
@CG I am sorry you are having such a tough time, the only consolation is that so many share your feelings and suffer the way you do so you are not alone. My experience with my husband is pretty much identical. I repeat myself 100 times a day, and yet he is in denial that the disease is affecting him. He is nasty and difficult, has no empathy and no interest in any one other than himself. He has alienated almost everyone we know by his rudeness, including our children, and yet is sweetness and light to strangers. He gets angry and resentful if I have a social life. I am still trying to work - from home now -to pay off his debts, and I miss the social interaction terribly. I share your feelings of wanting to run away, I see my life slipping away. My husband can be left alone as long as I leave food and lists so I'm not sure that we would qualify for carers. I do hope you manage to get the help you need and deserve xx
 

Bakerst

Registered User
Mar 4, 2022
147
0
I had a visit from an alzheimer's nurse today, a lovely lady I have met before, when my Mum was diagnosed. Yesterday evening was so bad I couldn't even post on here, I had to pretend I was going to the loo and sit and breathe, I had a pain in my body that wouldn't go away.
Anyway the nurse recognised how tired I was and sat and discussed all the options, she was the one person who had been and not been taken in by the hosting mode, she is going to contact adult care about the ridiculous assessment that was done on OH and get me some support 🤞I have to learn to accept it, which she also explained. I find it difficult to accept, I feel I am losing my privacy, my independence and have to change who I am, but needs must so they say.
I do appreciate the advice and understanding she gave and feel a little hope that things can be better. So what I am trying to say is, cg, we have to learn to accept support wherever it comes from, because we need it. Hope things get a little easier for you and we always have this forum..where everyone does understand
 

ZZ

Registered User
Feb 16, 2022
10
0
@CG I am sorry you are having such a tough time, the only consolation is that so many share your feelings and suffer the way you do so you are not alone. My experience with my husband is pretty much identical. I repeat myself 100 times a day, and yet he is in denial that the disease is affecting him. He is nasty and difficult, has no empathy and no interest in any one other than himself. He has alienated almost everyone we know by his rudeness, including our children, and yet is sweetness and light to strangers. He gets angry and resentful if I have a social life. I am still trying to work - from home now -to pay off his debts, and I miss the social interaction terribly. I share your feelings of wanting to run away, I see my life slipping away. My husband can be left alone as long as I leave food and lists so I'm not sure that we would qualify for carers. I do hope you manage to get the help you need and deserve xx
Thank you so much for this reply, it helps of course to read this, but I feel every ounce of what you are saying.
 

JaxG

Registered User
May 15, 2021
178
0
I had a visit from an alzheimer's nurse today, a lovely lady I have met before, when my Mum was diagnosed. Yesterday evening was so bad I couldn't even post on here, I had to pretend I was going to the loo and sit and breathe, I had a pain in my body that wouldn't go away.
Anyway the nurse recognised how tired I was and sat and discussed all the options, she was the one person who had been and not been taken in by the hosting mode, she is going to contact adult care about the ridiculous assessment that was done on OH and get me some support 🤞I have to learn to accept it, which she also explained. I find it difficult to accept, I feel I am losing my privacy, my independence and have to change who I am, but needs must so they say.
I do appreciate the advice and understanding she gave and feel a little hope that things can be better. So what I am trying to say is, cg, we have to learn to accept support wherever it comes from, because we need it. Hope things get a little easier for you and we always have this forum..where everyone does understand
I feel for you, I understand the distress and the loneliness, and the relief when someone finally gets it. Good luck, I hope you get all the support you need and this is a turning point. xxxx
 

Bigbrius

New member
Nov 9, 2021
1
0
I am struggling and I know it is going to get so much harder. I would say we are mid stages; can't do paper work, days of the week, month, repetition becoming more and more, circle of friends down to 3 (I know that is good for some men) - repetition "what are we getting the children for Christmas" maybe 30 times over 12 hours, he is lonely, massively depressed (wants to end it all) and this seems to be repeated constantly in what he is saying, asking me questions constantly, it is only ever questions "have you seen my" "How do I" "What are you doing today?" Questions only not a proper converstation any more. I still try and work, I am self employed and need to work mentally and financially as we have 2 children who are university age. It is so hard to describe in words the impact of him on our daily lives, I feel guilty constantly as I just can't make him happy, I am totally worn down by him, I am known for being bubbly and upbeat but I am ageing by the day, I am lonely, not depressed, yet, but don't think I am far off, and part of me wants to run far, far away. I have hated coming home from being out for years, he is always there, I am never at home alone, home is not home. We sleep separately now as I can't handle the night terrors (and kicking that can come with that), the anxiety. Anxiety is one of the worst parts, he feels useless, but it is totally overwhelming to be around. I feel selfish having strong feelings of "this is so damn hard", I feel lonely, I don't know how to do this. I do however have an appointment with the memory clinic this week and I have it in my head to almost lay a bit of law down saying "Help" please, I cannot be the only one dealing with his mental health every single day, it is destroying me, it is affecting my child and other children.
I know exactly how you feel my wife was diagnosed with Alzheimers just over a year ago and is worsening. The constant repetition, the anxiety, the tears, the accusations. It`s almost an interrogation when she speaks to me it feels like being on a treadmill. When the subject of respite care was broached she point blank refused, accusing the social worker and myself of wanting to put her in a care home. She said if I needed a break then go on a holiday. I fully understand your feelings of being alone. Go to your appointment at the memory clinic, don`t give up, you are not alone, the social worker we have is very good. Best of luck.
 

Bakerst

Registered User
Mar 4, 2022
147
0
I feel for you, I understand the distress and the loneliness, and the relief when someone finally gets it. Good luck, I hope you get all the support you need and this is a turning point. xxxx
Thanks 😊
 

Safi

Registered User
Apr 2, 2020
25
0
Really understand how you feel, it’s so hard going from having a husband who you used to socialise with to bring his carer. I’ve found so much support from our dementia nurse and I can email or phone her anytime. She always gets back to me and visits us at home occasionally. This was set up through the GP. Hopefully going to the memory clinic will help put you in touch with the dementia team in your area. Don’t try and do this all alone! It’s a massive job and you need to look after yourself. Keep posting how you are getting on.
 

ZZ

Registered User
Feb 16, 2022
10
0
I know exactly how you feel my wife was diagnosed with Alzheimers just over a year ago and is worsening. The constant repetition, the anxiety, the tears, the accusations. It`s almost an interrogation when she speaks to me it feels like being on a treadmill. When the subject of respite care was broached she point blank refused, accusing the social worker and myself of wanting to put her in a care home. She said if I needed a break then go on a holiday. I fully understand your feelings of being alone. Go to your appointment at the memory clinic, don`t give up, you are not alone, the social worker we have is very good. Best of luck.
Thank you so much. The appointment was good yesterday, they want to treat the depression (he cried all the way through the appointment) as we realise now he has not been taking the tablets even though I ask him every day. I am now taking over medication, I also came to a realisation that some of the things that I help him with repetitively, I am now just going to take over on my own as I can't take the showing him and him then getting it wrong again a day later, any more. On a positive note the attendance allowance was approved today, so that helps as have hardly been working which is a bit worrying. Thank you for replying and I hope you are ok. I understand the feeling of interrogation. I did actually go on holiday in March, I was desperate and I just had to go, I couldn't take it any more and I went a long way away ... but I did have my daughter, even though she is young, and step son to help out and friends and he is still able to cook a little on his own (stove is a problem though). The problem with having had a holiday I now feel I need another one, but what I realise is that I am going to somehow have to take a break from it weekly, the thing is I just want to be on my own at home, and that is just not possible as he is always here of course - oh dear it sounds so horrid saying that.
 

ZZ

Registered User
Feb 16, 2022
10
0
Really understand how you feel, it’s so hard going from having a husband who you used to socialise with to bring his carer. I’ve found so much support from our dementia nurse and I can email or phone her anytime. She always gets back to me and visits us at home occasionally. This was set up through the GP. Hopefully going to the memory clinic will help put you in touch with the dementia team in your area. Don’t try and do this all alone! It’s a massive job and you need to look after yourself. Keep posting how you are getting on.
Thank you, I am hoping that more support will be around the corner.
 

Clarice cliff

Registered User
Feb 15, 2019
17
0
I am struggling and I know it is going to get so much harder. I would say we are mid stages; can't do paper work, days of the week, month, repetition becoming more and more, circle of friends down to 3 (I know that is good for some men) - repetition "what are we getting the children for Christmas" maybe 30 times over 12 hours, he is lonely, massively depressed (wants to end it all) and this seems to be repeated constantly in what he is saying, asking me questions constantly, it is only ever questions "have you seen my" "How do I" "What are you doing today?" Questions only not a proper converstation any more. I still try and work, I am self employed and need to work mentally and financially as we have 2 children who are university age. It is so hard to describe in words the impact of him on our daily lives, I feel guilty constantly as I just can't make him happy, I am totally worn down by him, I am known for being bubbly and upbeat but I am ageing by the day, I am lonely, not depressed, yet, but don't think I am far off, and part of me wants to run far, far away. I have hated coming home from being out for years, he is always there, I am never at home alone, home is not home. We sleep separately now as I can't handle the night terrors (and kicking that can come with that), the anxiety. Anxiety is one of the worst parts, he feels useless, but it is totally overwhelming to be around. I feel selfish having strong feelings of "this is so damn hard", I feel lonely, I don't know how to do this. I do however have an appointment with the memory clinic this week and I have it in my head to almost lay a bit of law down saying "Help" please, I cannot be the only one dealing with his mental health every single day, it is destroying me, it is affecting my child and other children.
It's nearly midnight and I'm feeling just like you. Had a cry after an awful day.
Tried to take him shopping for new shoes but wouldn't go into the shop and shouted at me in the street.
I think many people reading your post feel like you.
Trapped,lonely,losing ones identity, becoming isolated.
The same questions over and over, no real conversation.
Having to deal with everything. We have a large garden which he says is easy to look after,doesn't see how much time I spend doing it.
We live up a hill with no bus service. I wanted to move years ago as I'm worried that if I can't drive we are 'out on a limb.'
You must get help. You need to ask for it otherwise you won't get any.
I have Time Out for 3 hours every week but by asking have just had this increased to 6.
The Admiral Nurses are good if only to chat to for advice.
I'm also lucky to have recently found a GP who is willing to help as I was seriously ill 2years ago and she is worried for my health.
She has offered to speak to him about respite care to give me a break.
Sometimes I could walk out of the door and not come back but we have to don't we.
Family don't often want to help so please try to use the services that are available.
Until people have walked in our shoes they don't understand just how hard it is.
 

canary

Registered User
Feb 25, 2014
18,528
0
South coast
On a positive note the attendance allowance was approved today, so that helps as have hardly been working which is a bit worrying.
You may not be at this stage yet, but now that he has Attendance Allowance, if you are of working age (so not receiving state pension) you can apply for Carers Allowance. Its not much - £69.70 a week - but they dont consider savings, you are allowed to earn up to £132 a week and still claim it and (IMO, most importantly) it will pay your NI for you.
 

Dianej

Registered User
Mar 27, 2021
40
0
My husband is a host mode expert. Ten days ago was his birthday. I told relatives we would be having a quiet day at home which turned into a day-long open house. It was lovely for him to see everyone but I was exhausted playing hostess for the day as normally we don't see anyone for weeks on end. They all went away saying how well he was doing but I am still dealing with the aftermath as it left him completely exhausted and disorientated. Three days later when I thought things were more normal, I took him shopping to the supermarket and when we got back to the car, he refused to get in and started shouting and being aggressive. How do you deal with a 6ft, 15 stone child? I was really frightened as he said he was going to walk home (eight miles and he has no sense of direction). Eventually I persuaded him back into the car. Since the birthday he seems to have really lost social skills, is more inappropriate with speech and behaviour to sttrangers, and the sundowning has got much worse. Is sundowning a permanent thing or a phase? How do others cope with the aftermath of social occasions or should I be more firm about them? I am exhausted and really fearing for my mental health but am worried that if I see my GP she will just prescribe calming drugs for me which I don't want. Sorry, I am too tired to even write this coherently!
 

TNJJ

Registered User
May 7, 2019
2,548
0
cornwall
Hi. My dad has VD and his birthday is coming up soon.I limit visitors if I am honest. Dad can only cope with one person at a time. Some of them phone ahead to me and I usually say whether or not to visit. Dad is good at host mode. Even for the carers. Dad sundowning starts at about 3 pm so I try and get him into bed when the tea carer arrives. Dad is immobile and has to have equipment to move him.He.is also in the moderate to late stage.
 

Bakerst

Registered User
Mar 4, 2022
147
0
My husband is a host mode expert. Ten days ago was his birthday. I told relatives we would be having a quiet day at home which turned into a day-long open house. It was lovely for him to see everyone but I was exhausted playing hostess for the day as normally we don't see anyone for weeks on end. They all went away saying how well he was doing but I am still dealing with the aftermath as it left him completely exhausted and disorientated. Three days later when I thought things were more normal, I took him shopping to the supermarket and when we got back to the car, he refused to get in and started shouting and being aggressive. How do you deal with a 6ft, 15 stone child? I was really frightened as he said he was going to walk home (eight miles and he has no sense of direction). Eventually I persuaded him back into the car. Since the birthday he seems to have really lost social skills, is more inappropriate with speech and behaviour to sttrangers, and the sundowning has got much worse. Is sundowning a permanent thing or a phase? How do others cope with the aftermath of social occasions or should I be more firm about them? I am exhausted and really fearing for my mental health but am worried that if I see my GP she will just prescribe calming drugs for me which I don't want. Sorry, I am too tired to even write this coherently!
My OH is exactly the same, all his daughters family 5 adults and 4 children came for a 'tea party' I was exhausted trying to get it all ready, answering endless questions talking him down from he didn't want them to come to accepting them coming. After they had been here for an hour, he disappeared, my daughter phoned ( she lives across the road) to tell me he was there and didn't want to face them all. He was, like your husband, confused disoriented for days. It was a nightmare. I let them come because they were his family and didn't want to appear awkward, but it will never happen again. I will be pleasant but firm it upsets him as well as causes unending stress for me.
As for the sundowning, it doesn't seem to go away I'm afraid, medication helps for a while, but some days it starts earlier and earlier, sorry.
Completely understand and sympathise with you but not much help I'm afraid. Just be firm and think of yourself and post on here to get it off your chest xx
 

Dianej

Registered User
Mar 27, 2021
40
0
Thank you @Bakerst and everyone on here. it does help to have a rant now and then. I think I know the answer really and that is that there are no answers. The sundowning is getting much worse to the point where he continually asks me if there are other people in the house, especially his mother, and paces around the rooms. He washes television standing up. I'm never really sure what is the right thing to say. You could almost set your watch by it at 5.30pm, then till bedtime. He is also starting to get a bit aggressive (not physically) and argumentative which he never used to be. It's a constant mental battering. He will go to bed OK about 11pm but currently wakes up at daylight (this morning was 4.30am) and then I have to get up to make sure he's not blowing up the kettle or wandering into the front garden in his boxer shorts. I'm exhausted and the knowledge that it can all only get much worse is leading me into depression. I think I'm only just holding on.
 

Violet Jane

Registered User
Aug 23, 2021
854
0
@Dianej, that sounds horrendously difficult. There is medication that could help with sundowning. You have to ask for it. As with most things to do with dementia, carers are rarely told about it or offered it.
 

Kas 0103

Registered User
Jan 12, 2022
32
0
Zz, just read your post and I wondered if your husband would join a similar sort of group to the one I persuaded mine to join? I found it through this site, on the section that’s about help near you. The group mine belongs to is called Every Day Counts, it meets once a week on a Wednesday from 11-4. There are various activities organised and they have an excellent cook who provides people with a super home made dinner and wonderful cakes I the afternoon. My husband has reservations, but I sold it to him that it’s about making the most of all the abilities you have to make sure you keep happy and healthy, citing recent evidence that you need to use it or lose it… Those four and a half hours are so precious! I can meet with friends, go to appointments or just go home to sleep, though I do need to remember to set the alarm in my phone, as I had a near miss one week!
 

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