It is nearly three weeks since my Mum was admitted to a nursing home on a fast track CHC from hospital. The doctor who discharged her believed that she is at end of life although they are unable to say exactly how much time she has. She is physically very frail weighing a little over 4 stone and it is generally accepted she has dementia although we have not had a formal diagnosis.
Mum and I have always lived together and I have been caring for her for several years with her needs increasing over time. It was very hard to admit I could not cope with caring for her any more and relinquish that caring role. I have felt very guilty letting her go to a care home. Friends and family have told me that I did as much and more as could have been expected of me ,but I still feel I have let her down.
I go to see her every day and I’m accustomed to her fluctuating moods. I am also used to her suffering with delirium. For instance today she was convinced the people in the care home wanted to harm her and she was not safe.
On my way out I spoke to a couple of the nurses in charge of Mum’s care. One of them said to me that Mum had been distressed for the majority of the day. They also mentioned that she had used offensive words to some of the care assistants earlier in the day although they did not specify what the words were. One of the nurses said to me that this was not the lady that they knew - a comment I found rather hard to take given Mum has been there such a short time and taking her condition into account. The nurse acted as if she was disappointed in the way that Mum had behaved. This is a nursing home which supposedly specialises in dementia. I also found it hard to stop myself saying that Mum is also not the person that I once knew and that I know her far better than anyone there.
I am really questioning whether the home is the best place for her after all and if I should say I want her back home.
Firstly, you are not a former carer, you are still very much caring for your Mum. You are visiting her and advocating for her and overseeing her care. Please don’t feel guilty.
If she is distressed a lot of the time, then it’s worth requesting the GP visits her as they can probably give her something to help her feel less anxious.
I wonder if the nurse mistook you for someone else’s relative, since your Mum has only been in the nursing home since she left hospital.
Apart from this thoughtless comment, is the care your Mum is receiving good?
Try and use your visits to have quality time with your Mum, perhaps listening to her favourite music, telling her memories of good times you shared, giving her a hand massage if she’ll tolerate it etc
Hi Clare
This is a distressing time for you which I fully understand.
My lovely late husband was at times very agitated with care staff and nurses in the nursing home. He was a man who never swore at ladies, or in general, ( I suspect having a pint with mates and banter may have been different!) He was agitated when staff didn’t explain what they were going to do, even if just to dress him. He felt threatened. I accepted that I and my family would be care managers, and would remind staff to explain, that for them it would be easier and quicker. If they told me he had been aggressive I would ask why! Then would remind them he had dementia and other health issues and their training should involve the understanding of that! I stopped apologies because I felt they had shown impatience with him. He was never horrid to the domestic staff, because they weren’t involved in his personal care.
I do understand that it must be awful when swore at etc must be wearing when trying to help and pay isn’t at its premium. That is not the residents fault, and they deserve respect.
You did what you can, you don’t have to be guilty and your doubts were legit. It is normal to feel doubt if it will be good for them because you care and your care is enough. If you are still unsure you can contact the owner or probably hear some reviews from other patients’ carers.
Melly1 - yes I think she is getting good care otherwise and she was discharged with various meds to be given when needed, one of which is Haloperidol. I know she could be equally agitated if she was at home as it’s not really her location but her state of mind. It’s just so hard to see her going through it and not being there for her all the time.
Pet66 - so sorry for your loss and yes I think that’s part of it for Mum too, feeling threatened. Sometimes she’s just fed up having to live to someone else’s timetable. Until the last few months she was an independent woman and she when she remembers her limitations now she gets upset. I would have thought the nurses would appreciate that. That’s a good tip about getting them to tell me if she’s been like that so I can ask her why.
Carmen_2111 - the home has a good reputation and I’ve had a couple of independent people say the staff are great. Maybe yesterday had just been a bad day all round.
I’ll take a box of biscuits in today as a thank you and have another chat with the nurse.
The biscuits sound a good idea and Pet’s advice re asking how she has been and if they say she has been upset, asking why they think that was.
It might also help if the home knew what she was like before she became so poorly, some pictures of her when she was still active, photos of her when she was younger, any background information e.g. her career, where she has travelled to, her hobbies and so on - information to help them relate to her more and identify with her more.
I took some photos of Mum in the other day with her children and grandchildren. We, her children, were really her life and she did a fantastic job of bringing us up while dad was off having affairs and going on business trips.
I had a call at work today because they were trying to give Mum her Covid booster and she went hysterical. I assured her she was safe and stayed on the phone while they gave her the injection.
She was calm when I visited this evening and on the way out I chatted with the nurse who had called earlier and we chatted through some of Mum’s younger life, famiky. The nurse said to me it’s the emotional support they are finding hard to give her or rather for her to accept. I said I had been wondering if I should bring her home and she said to me while she would never say don’t that it would be very difficult. I’m aware of that, of course, as it had been tough before her last hospital admission.
So at the moment I’m reassured they are doing their best for her, but still wavering on whether I made the right decision on sending her there.
Claire
That is such a natural reaction. I often thought that I was going to arrange to get my husband home. The guilt monster used to jump on me. Actually I had no choice, his consultant strongly advised that hubby being at home would neither be safe for him or me. It can take a long time for residents to settle. I made friends with 4 visitors in the home and all 4 from time to time said they felt the need to take loved ones home. You have to consider how you would really cope. Would it be fair on either of you. It’s very hard. Heart and head balance
It’s such a help talking to you and others here who have been through similar experiences.
Truly I know Mum is safer there than at home with a patchwork of care while I’m out, but as you say the guilt monster is always ready to jump on you.
I was surprised but heartened today when I asked about Mum being allowed outside of the home and they said it’s fine. I thought Covid would have put a stop to that but they have measures in place to allow it. So I could have her back home for a visit for a few hours at the weekend. I did ask if it might cause her upset having to go back after visiting but they said it just needs to be handled right.
So aa long as they feel she’s up to it at least I can give her a change of scene now and then.
Claire, this works for some and not others. My cousin used to take my auntie home for the day on weekends and it was always fine. However a recent poster on here had difficulties taking her relative to hospital appointments because she got very upset going back to the home. You’ll just have to see how it goes.
Claire
Could you take your mum for a short walk in a wheelchair just out of the grounds as a bit of a trial.
As Melly said,it works for some and not others. My friend took her dad to the pond that were in the grounds at the home and he ’ played up’ when she started to take him back. Careful handling as you obviously know will be needed.
Such a sad situation.
This is very like my experience at the moment except the staff are quite kind
My mum has been in the care home 8 weeks now. It’s a proper roller coaster as one week she reckons the staff are lovely and the next it is the worst place ever
I can’t look after her at home and the guilt is immense.
I used to bring my Mum back to mine from the care home for Sunday lunch and I used to pick her up and take her to a nice dementia group on a Tuesday morning which she loved. i also used to just take her out in the wheelchair when the weather was good.
As her mobility worsened and she was not safe getting in and out of the car we had to stop those outings and just a walk in the wheelchair had to sufice but she did enjoy it.
Sorry you are going through this too. I’ve had days in the last few weeks when I’ve felt like I’m breaking. I’ve felt better the last couple of days but I know there are still rough times ahead.
The staff at the home where Mum is are lovely too. It was just that one comment in my original post that rattled me. Not that it takes much to rattle me at the moment!
It’s not only hard to know how our mums will be from one visit to the next, but how we’ll feel too. I have days when I can speak calmly and sensibly about things and other times when one kind word will leave me a teary mess for the rest of the day.
Today Mum was planning how to get out of the house tomorrow morning so she doesn’t have to join in with “the pantomime”. It was hard work for the first hour but I told her about the risotto I’d made and brought along which seemed to cheer her up and we shared it later on.
I hope you can get some restful sleep. My pattern has settled down for now though I was struggling too a few weeks ago.
I’m here to chat or just listen if you need to offload.
Many thanks for your comments and thoughts re taking Mum out of the home.
I must admit I’d thought a walk with the wheelchair would have been all that was allowed so was surprised and pleased I’m allowed to bring her home. I think for Mum it’s more getting away from wherever she is that makes her feel better. In the ambulance from the hospital to the care home she was calm and happy. (I was the snivelling wreck!)
While she was still at home (the place we’d lived for the past years) after her discharge from hospital in the summer.she had started to not always recognise it as her home too, but referred to me as having taken her in She got rather stir crazy a few times and when we got the wheelchair really appreciated the walks we had.
The home is about a third of the way up a hill that does not have very wheelchair friendly pavements (discovering the difference between good pavements for pedestrians and good pavements for wheelchairs was a revelation!) so I think I’m just going to take the plunge and try an afternoon at home next weekend. That’s assuming she’s up to it of course, I’m still taking one day very much at a time.
Today she insisted on not being put into the wheelchair they’ve used every day to take her from her room to the lounge but walked there and back with two assistants either side of her for support. I think she has surprised them with her determination. She seems to be getting physically stronger, but I’m taking nothing for granted.
I discovered how bad footpaths are too Claire! The road from Mum’s care home appears flat when you drive. totally different with a wheelchair though. The pavements seem to slope down to the road so I struggled to keep the wheelchair on an even keel. I used to come back with one of my arms aching!
Poor Mum used to worry so much about going to the toilet that we had to make sure she “went” before we left. We would get half way round our walk then she would say she needed to go, having completely forgotten that she had already been.
Absolutely Penny! You feel every little incline to the sides of the chair. Plus things I’d never thought of while walking alone like no dropped kerb, whether a path is too narrow or stony, cars parked on the pavement leaving you no choice but to go into the road.
On a positive note I did find more drivers would to stop and let you cross the road if they saw you waiting.
Oh yes, on our second trip out Mum suddenly said she wanted to go to the loo. We were only five minutes from home but it felt longer on the race to get back in time!
Claire,
After someone you love has moved into residential care, it’s a whirlwind of emotions.
Relief, guilt, mourning in advance, knowing mum is on borrowed time and more besides.
Be kind to yourself.
Mum is lucky to have the support of a daughter living nearby, many don’t have this.
Be PROUD of what you could do for mum, not guilty about her need now for 24 hour care.
