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Filled with sadness after carehome move.

Trebor64

New member
Jan 28, 2020
6
Yesterday we moved my dad to a carehome after weeks of stress with my 89 yr old mum trying to cope with him . Even with the Carers coming in 4 times a day it was clear things were becoming unmanageable. He was constantly asking to go home , packing books and pictures in a bag . He ventured out 3 times and had to be rescued by me , unable to walk a few yards he somehow found the strength to get across the road and far enough away to a set of traffic lights on quite a busy road. Although I know the move had to happen I am wracked with guilt and can’t stop thinking how he will be feeling. The home said he managed to get himself dressed , packed his bag and was found in the corridor trying to go home , he had got out of the bed on the side where there isn’t an alarm mat! I Think he’s-giving them a run for their money and he can be quite challenging. I’m o worried he won’t calm down and the thought of him being in a constant turmoil is just awful. By the time we took him to the home he didn’t really know me , my brother or my mum . I thought that would make it easier but it hasn’t , I’m an emotional wreck. I keep thinking could we have tried harder to keep him home ? Should we think about full time care in the home ? Sadly I really don’t think that would be a good move and this situation is now our reality. maybe I’m just too emotionally exhausted to see clearly at the moment .
Sendung love and strength to all of you managing loved ones through this evil disease at this awful time.
Hayley Jane, my partner was admitted to a Nursing Home on March 25th. Our story and feelings are very similar. Myself and the family all feel emotional wrecks. My partner is only 59. She wants to come home, and did so at home, when we ring and get to speak to her, she asks why we haven’t seen her. She accuses me of seeing someone else !!
We can take reassurance from the kind words on here, and from our friends and loved ones elsewhere. There’s times when I think it’s just as hard dealing with the guilt and worry, as it was when at home living with the Dementia.
I guess it will be easier for us, once the lockdown is over. That’s what makes it harder for me and the family.
We love, protect and care. That’s what we do. That’s why we feel guilty, worried and anxious. I felt a massive sense of “weight off my shoulders” , not realising how much living with Dementia in your household takes over your lives. I felt guilty about this...
We have to trust the staff in the homes, it’s tough for them at the moment too.
God knows what they’re going through.
All I can suggest is to try and stay busy, speak to friends and family. Share how you feel, and don’t bottle it up.
I’m glad you’ve posted. If it’s any consolation, we’ve shared how we feel. Thanks for that.
Stay safe, take care. Thinking of you.
 

May30

Registered User
Feb 25, 2017
48
I felt the same when my dad went into a home but I was eventually able to see that the focus had been on my dad for so long that my mum had almost been forgotten about. I dread to think what would have happened if she had still been looking after him as neither of them were safe and she really thrived when she was able to focus on herself for the first time in 4 years. My dad was also challenging at first, he was really aggressive during personal care but the staff took time to get to know him and work out strategies that worked for him and he did settle. It took a couple of months before he was completely comfortable there. You could tell after a while that he felt safe with the staff and in his little room. He was asked once where home was and he said "where they give me food" so that made me feel like home became wherever he felt safe. I still feel guilty sometimes about how the whole situation but looking back I'm able to have a better perspective and counteract a lot of the negatives with positives. It's such a hard process anyway so be kind to yourself and imagine you are speaking to someone else who is having to go through it, you'd be telling them they did the right thing and that they did their best, which you have done. Thinking of you and hope it improves soon 🌻
 

imthedaughter

Registered User
Apr 3, 2019
508
Update , Dad not settling well at all. Spending time trying to get out of the home whilst everyone else is having dinner. I’m not a bit surprised! He was always determined and nothing has changed in that respect. Unfortunately he accusing people of stealing his walking stick, says there are some awful people in there , thieves ! He hasn’t got a clue where in the world he is but is wanting to go home every day . Apparently he has been aggressive as well . If It carries on he might end up having to go to an EMI unit , I can see it coming. I feel sick every day and my anxiety is taking advantage of me ! @jaymor Im praying for your scenario.
Dad was quite similar, famously stubborn. He was also accusing people of stealing his stick, playing his piano, taking his things (he would say to me "There are thieves in here, you know") and we once had a multi-day event where he claimed an ever-changing sum of money had been taken. I'm afraid this is all quite normal for dementia. However, after the money obsession passed, he has largely been settled and even happy. He will never get better, I know, and there will be incidents, but in general, he knows he is safe and can relax at the home. And his overall health has improved, to the point where he thinks it's about time he moves out! I actually think this might be a positive step in that he feels well. This whole thing is a marathon, not a sprint, try to give it time.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,861
Nottinghamshire
It took my dad a few weeks to settle into his EMI home. He couldn’t walk by the time he got there so didn’t try to leave but he could be aggressive - throwing drinks at people and refusing personal care. I couldn’t think about anything but getting him out of there. He had to stop for 4 weeks assessment. By the end of this period he’d settled, started to join in the activities and the staff had got him walking again - slowly with a zimmer.

I decided to leave him there and realised that really I should have made the decision to move him into the home months before. Everyone here had been hinting that I should but it’s such a difficult decision to have to make..

I hope your dad settles quickly @Hayley jane . I’m sure you’ve made the best decision for everyone, not just for your dad.
 

Palerider

Registered User
Aug 9, 2015
2,021
North West
Update , Dad not settling well at all. Spending time trying to get out of the home whilst everyone else is having dinner. I’m not a bit surprised! He was always determined and nothing has changed in that respect. Unfortunately he accusing people of stealing his walking stick, says there are some awful people in there , thieves ! He hasn’t got a clue where in the world he is but is wanting to go home every day . Apparently he has been aggressive as well . If It carries on he might end up having to go to an EMI unit , I can see it coming. I feel sick every day and my anxiety is taking advantage of me ! @jaymor Im praying for your scenario.
Don't worry too much about moving to an EMI unit and others have said its early days yet, he may settle down eventually. I had to move mum to EMI due to aggression usually with interventions and to be honest it has been absolutely the right move in the end. She can do prity much as she wants and wander and potter all day long, plus because there is a nursing element she actually gets better care than a residential care home. It takes a team of people to get her showered, hair washed and clothes changed as her Alzheimer's has progressed, I could never have achieved that at home in the end as well as the constant 24/7 of keeping watch.

It is heartbreaking and there isn't a day that goes by I don't think 'what if?'. But looking back it would only have ended badly if I had carried on at home with a disease that takes away a persons ability to reason, problem solve, carry out their activities of living and maintain their own safety -their ability to continue being independent.

Mum has settled finally, and is content in her current EMI unit and that staff are amazing at dealing with her aggression (which isn't often now) but the important thing is that there are golden moments to be had with mum in what is the best of a bad situation. It takes time for us the emotionally wrecked carers to come to terms with it, if we ever fully do.

So as weary as you feel, know you've done your best and after much soul searching know that its a journey, a path with lots of sign posts and stops along the way. Some will be pleasant and uplifting places and other places will be scary and unwanted, but you can't take another direction and no matter how hard you try, there is no turning back, because this isn't you calling the shots its the disease.

Hoping your dad settles in time and hope that this part of the jorney becomes easier as time goes by. Try not to anticipate things too much, I know anxiety well and it feeds our worse fears so try to find ways of distracting yourself and give yourself a huge treat for doing your best.
 

Hayley jane

Registered User
Apr 1, 2020
29
To everyone , thank you for sharing your stories. I can’t tell you how much that means. I re read them all when I feel upset and i have shared all your thoughts with mum . It’s been a lot of comfort to us. I hope I can help and support others in the future xx
 

Palerider

Registered User
Aug 9, 2015
2,021
North West
To everyone , thank you for sharing your stories. I can’t tell you how much that means. I re read them all when I feel upset and i have shared all your thoughts with mum . It’s been a lot of comfort to us. I hope I can help and support others in the future xx
You already have helped @Hayley jane just by posting your experience and thank you for making me realise that I'm not alone ;)
 

Lynmax

Registered User
Nov 1, 2016
579
I'm sure my mum thinks I have abandoned her! She moved to her care home three weeks ago after five weeks in hospital and has had no visitors, I hone a couple of times a week to see how she is but I haven't spoken to her on the phone yet.

My sister did once but it upset Mum and unsettled her so I don't think I will try. The carers did sent me a couple of videos of Mum singing on VE Day so I could see that she was looking well, wearing her own clothes and shoes.

It really feels wrong not to see her but often the advice is not to visit for a few weeks anyway to help new residents settle down. I don't think waving to her through a window would help. I've still got her Mother's Day present in my car boot waiting to give her.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,718
66
Toronto, Canada
It took my mother fully two months to stop packing up her clothes EVERY SINGLE DAY! We had removed her cases and all bags but she would use the bin liners. I don't know where and how she got them sometimes. Eventually she settled in as much as she ever would. So there is a lot of time yet for your dad to settle.
 

Hayley jane

Registered User
Apr 1, 2020
29
It took my mother fully two months to stop packing up her clothes EVERY SINGLE DAY! We had removed her cases and all bags but she would use the bin liners. I don't know where and how she got them sometimes. Eventually she settled in as much as she ever would. So there is a lot of time yet for your dad to settle.
@Canadian Joanne i think that’s going to happen to us as my Dad isn’t settling at all. We will hang on in there hoping for the best. We don’t have a choice . Hopefully he will one day
 

Hayley jane

Registered User
Apr 1, 2020
29
Sorry to read your dad isn't settling in at the home x Hopefully he will soon, I don't know how long it might take as I've no experience sorry, but it's not been that long yet so he still might settle. Although it must feel like a long time to you and your family as every day feels like at least a week when you're worrying doesn't it. I have no experience of a parent going into home so probably shouldn't be replying but I just wanted to say please don't feel guilty, you and your family have been very brave finding help for your dad. I hope he will settle soon
You said your dad was packing up and trying to leave and asking to go home when he was at home, so that behaviour is no different now he's in the home, so it's nothing to do with the care home environment not suiting him and it's not your fault for taking him to a place he doesn't know (care home) either as he didn't always know his real home when he was there. I've read on the forum many times that people aren't wanting to go home to their real home when they say that, but are looking for a place they feel safe as they are confused and can't work out what is happening and assume that they will feel better when they get home. This can't be home because they are still confused. Sometimes we can calm our loved ones down and help them feel safe for a while, but we can't always find a way that works at the right time every time. Its too much for us to on our own, it's made harder when they don't recognise us properly, and when looking after them without a break and we are tired . In a home there are more people who get regular breaks to help to try settle your dad and he is less likely to be able to get out too. So although he may not feel safer himself yet, he is safer there. I'm sure you told the staff what was happening before he went in and so they will be prepared for him asking and trying to leave and if it isn't and he needs a little more help and attention to feel safe then staff in an EMI unit may be better for that.
We went to look round a home with EMI floor a while ago as mums SW said if she had respite she would be better in EMI unit as mum was resistant to help and would probably try to leave. I didn't notice much difference in the floors apart from they had photos and names on bedroom doors rather than just names and the EMI residents had more attention from staff. In that home it was mixed and the staff member showing us round said residents did mix together a lot.
I hope my reply isn't out of turn x I think guilt is ever present as a child of someone affected by dementia but you and your family have done a brave thing trying to get your dad help he requires and that isn't something to feel guilty about. Sending a virtual hug 🤗 for you and your family, including your dad and I hope he settles in and feels better soon.
@annielou thank you x
 

Ellie's mum

Registered User
Mar 16, 2014
1
Hi Hayley Jane,
I am so sorry to hear of your sadness and guilt regarding placing your father in care. I was in a very similar place in the Autumn of 2017. I had been caring for my father at his home for just over five years and had promised him that I would keep him there as long as it was safe to do so. For the last 3 years he was there he also had a care package of 3 visits per day in place. I won’t burden you with the all the awful details but , suffice to say , inevitably, I had to make the dreadful decision to place him in a care home. It is a hugely traumatic thing to do to a parent and the guilt I felt at the time and for several months afterwards, was palpable. My father always said that the only way he would leave his property was in a box. I had to tell him that he was only going to stay in the care home for a few days so that I could have a break. The first time I visited him he was sitting with his coat over his arm ready to go home. It was heartbreaking. But, moving on , Dad has been there since December 2017 and within a few weeks he had settled in well and his health improved . I never thought that my Dad would settle - but he did. He is very happy and content there and he is well cared for. Much of the time he thinks he is at his own house, or that he’s at day care and will be going home later. I always go with the flow and then change the subject and with his Dementia , he soon forgets. So, please , give it time , and try not to feel too guilty. I can honestly say now that it was the best decision I ever made for him. I truly believe that he wouldn’t still be alive now if he had remained in his own home. He is safe, cared for, clean and well fed at the care home and , consequently, I now get to sleep at night again.
 

Hayley jane

Registered User
Apr 1, 2020
29
Hi Hayley Jane,
I am so sorry to hear of your sadness and guilt regarding placing your father in care. I was in a very similar place in the Autumn of 2017. I had been caring for my father at his home for just over five years and had promised him that I would keep him there as long as it was safe to do so. For the last 3 years he was there he also had a care package of 3 visits per day in place. I won’t burden you with the all the awful details but , suffice to say , inevitably, I had to make the dreadful decision to place him in a care home. It is a hugely traumatic thing to do to a parent and the guilt I felt at the time and for several months afterwards, was palpable. My father always said that the only way he would leave his property was in a box. I had to tell him that he was only going to stay in the care home for a few days so that I could have a break. The first time I visited him he was sitting with his coat over his arm ready to go home. It was heartbreaking. But, moving on , Dad has been there since December 2017 and within a few weeks he had settled in well and his health improved . I never thought that my Dad would settle - but he did. He is very happy and content there and he is well cared for. Much of the time he thinks he is at his own house, or that he’s at day care and will be going home later. I always go with the flow and then change the subject and with his Dementia , he soon forgets. So, please , give it time , and try not to feel too guilty. I can honestly say now that it was the best decision I ever made for him. I truly believe that he wouldn’t still be alive now if he had remained in his own home. He is safe, cared for, clean and well fed at the care home and , consequently, I now get to sleep at night again.
@Ellie's mum , thank you for sharing . Sadly I’m not doing so well as 2 days ago the carehome manager said he seems to be calming a little , saying he was very respectful and this felt like such a relief but tonight they have phoned me saying my dad had hit one of the staff in the back with his stick as she was going through a door. I have never known him to lash out ever physically and certainly not to a lady. That said I realise this disease can make them act in all sorts of ways. He is desperate to go home and they did say they thought it was an accident but I wonder if it was because he was trying to get out of the building. they have said they are going to speak to social services to see if they can provide further support but ultimately i have a feeling this isn’t going to go well and in the end he will have to be moved. I feel bad that I can’t see him and worry he must feel so alone. He said to me he didn’t know why he was there and what he had done wrong. But I also know that he may not even remember any of it tommorrow . This is such a rollercoaster of a ride :(
 

Just me

Registered User
Nov 17, 2013
391
It’s so easy to say you made the tight decision when you’re not involved personally but take heart that your mum would not have coped with your dad at home.
He is getting the help he needs from professional people and if he has to move I hope others on here have been reassuring.
I’m in the process of looking for full time care for mum and have been ringing round homes today in between floods of tears.
It certainly is an emotional rollercoaster.