Mum in assessment home, I feel so lost

Have looked after my mum from a distance in her own home for 9 years. Now after a fall down her stairs and an horrific process in hospital (in for 5 weeks) she is in an assessment home while we all see what is going to be the right placement. The assessment home is 1 1/2 hrs from me. Quite isolated little village with limited phone signal in her room. I feel so lost
Caring for her was hard daily work - phone calls, monitoring through her cameras when we were concerned, weekly visits, communicating daily with carers. But it was part of my life. My life now feels so bleak and empty without knowing she is there in her own home ready to pick up the phone for a chat. I miss her so much.

This sounds selfish - believe me I have been through all the guilt about what I should/shouldn’t have done for her and all her suffering in hospital - and I am almost out of my mind with worry about her wellbeing now. Although I am working hard advocating for her, it’s not the same as I feel so cut off from her directly. I just didn’t realise how important all those daily routines of maintaining her were to me. I feel so lost. I worry that I have lost so much of myself that dementia will come for me soon.

I have a husband and a job (mainly remote work) so in theory plenty in my life but still. Tried to drive to visit at weekend but had such severe anxiety attack I had to turn back. I think I might need time off work to find her a care home near me and to pack up and sell her house. But I am worried that if I take time off I will feel even more isolated and disconnected. I have been through this before with my Dad also long distance and it has taken its toll on both of us. Can we all come back from this? Did anyone else feel this lost when a parent went into a home? Will it feel different if I can get her settled in a home near me? Thank you.

Hello J, I’m sorry that you are having a difficult time, you do sound very lost.

Has anyone given you any indication how long the assessment process will take? Will your former arrangement still be a viable option, or would it be impossible for your Mum to live in her own home (even with your support)?

I can understand how the thought of having to pack up and sell Mum’s house is a daunting prospect, but would say that you don’t have to be thinking of that just yet. Focus on what is immediately in front of you, your Mum’s assessment of needs. Once you know the outcome of that, then you can start to think further forward. For now, little steps.

When it comes time to make alternative arrangements for Mum, or to help her to move back to her own home of that’s the best option for her, you could maybe ask if your employer offers ‘special paid leave’ for domestic emergencies?

J, you have inevitably done too much for too long, and now you are going through something like a grieving process. Be kind to yourself. While mum is being assessed there’s not too much you can do, think of it like treading water. Definitely investigate good care homes near you. Start by looking at the CQC website, then work out the best one nearest you. Visit, and talk to the Matron/Manger and make tentative arrangements. Good homes have waiting lists, having mum nearer is so much easier. For the moment, empty mum’s fridge, bring home any valuables and notify her home insurance company. If possible, get someone to mow the front lawn once it starts growing, so the house looks cared for. Find out about NHS Continuing Healthcare. Don’t talk to anyone in Social Services or the hospital about the house, who owns it, or what it’s worth, until they have done an NHS Continuing Healthcare Assessment. I have helped empty three homes, my parents, my brother’s, and my in laws. Happy to offer hints and tips later, when mum is settled, if you need it. While mum is being assessed, get your husband to take you aware somewhere for the weekend, a complete break, to eat, sleep, walk and relax.

Thank you so much Bowlingbun for your understanding and practical advice. It is a grieving process I think, you’re right. It’s hard to tread water isn’t it, but as you have pointed out, there’s lots I can do and am doing.

That’s a good point about her insurance company - I had not thought to do that! And re funding - I have got her re-assessed at the first step so that a CHC checklist can now be done. Re homes - they are much more expensive where I am compared to her location now. I want her to be somewhere good that meets her needs - but if she does become self-funding I wonder if down the line a more expensive location would be perceived as a deprivation of assets? I don’t want her to have to move in a couple of years. Thank you again - and I am sure I would like to pick your brains later re clearing out.

Thank you, Teddy. Yes, I have done some mental gymnastics to consider how I could get her home again, but really I think that ship has sailed and I perhaps kept her independent longer than I should have. That’s good advice about little steps. I have found I can have 5 days paid carer’s leave so maybe I just have to use that wisely. I think I got a bit stuck thinking I would need a block of time to face it all. But as you say, if I break it into little steps and pace myself maybe I can make that work - and we are still at assessment. I think Mum has been in just over 2 weeks now so she’ll be nearing the 28 days soon. I’m not sure how much anyone really understands her needs, but I have had the clinical nurse go back in to re-assess so at least I am now involved in the process. It was hard work to shoe-horn myself in though even though I have POA - and I had no information at all from the hospital. It will be a big relief if I can get her settled in somewhere near me. I have been told that if the assessment home offers her a place I should not risk unsettling her with a move - but just I don’t think I can keep up the long distance visits or hospital stuff hours away from home any more. Thank you very much for your kind reply and practical advice.

Definitely get the nicest affordable home as near as possible. Mum ended up a mile away, I went past whenever I went to the shops, so could call in a have a chat, if she needed something I could take it in on the way home. I had been Girl Friday for years, it was lovely for the first few months, back to the relationship we had long, long ago. Sadly a series of strokes gradually robbed mum of her sight so she could no longer ready, and her hearing. I have slight problems with my vocal chords after a bad cough long ago, if I talk too loudly for too long I then can’t speak at all. Over a month once. (Much easier to chatter with my fingers!!!) When it comes to sorting out the house, I was great for the first hour, slow at the second hour, then went back home. Mum’s was only 6 miles away, so a little and often worked for me, ably assisted at weekends by my big strong sons. M has learning difficulties but if I give clear instructions in short sentences he’s great. It’s a really depressing job I’m afraid.

Ah, lovely that you got to have those months of connecting in the old way with your mum. So sorry about her sight though - life feels very cruel sometimes. I said to my mum recently, “I’m so sorry you’ve had to go through all this discomfort,” thinking she wouldn’t really understand. She said, “Oh I don’t think of it - it’s all part of being human.” It was surprising and rather profound. I can understand your process with the house - I think that would be me. As I’m at a distance I will need to find another way through. My hub will help and he will be much more focused and not at all sentimental of course. I think I will need to gather and curate the important things and then sort of decant everything else into boxes and bags to sort later at home. I’m most worried about family photos and my mum’s own paintings. So hard to let go of but I have no one to pass my own photos to as it is without collecting more. I think there is no easy way is there. Thanks for sharing your experience (and chatting with your fingers!)

Just remembered. As we tidied up we put all the papers we found in the kitchen. Emptied the contents of the furniture in the lounge, polished it, had a vacuum and used that like a furniture showroom and started to sell it, so the house gradually emptied. We didn’t want to have a skip at mum’s to attract attention, so I had one at home as I have a very large garden and son has a tipper and a friend runs a skip company. Very little was wasted. You might find it helpful while you are in limbo to make a few plans. My mum just left most of it to me to sort out, brother, nephew and niece “too busy” of course! I gave the hospice that cared for dad many car loads, they were on the route between my house and mum’s.

Good to hear that you have access to carers leave - this is new in my workplace and I’ve been told that I can access it to accompany Hubby to his medical appointments. Previously I had to take flexi or annual leave.

About risking a move for your Mum, I’d say that you know her best and since any place needs to be good for you both, go with your gut on that one.

@bowlingbun has given a wealth of helpful advice. The only house clearances I did were upon the person’s passing, so slightly different to your situation, but we invited the local Red Cross shop to come and select any furniture that they would be able to sell on, and they were happy to bring a van and pick it up themselves.

Thank you both. I had thought of a clearance company but not Red Cross - what a good idea. She has a lovely orthopaedic sofa hardly used that they might want and a few other bits as well.

And thank you re homes - I am looking now.

Thank you bowling bun - that’s a good point about the skip. I think I will have to take what I can and then get Red Cross as Teddy has suggested and then have a clearance for the rest. It’s good to hear of others’ experience going through this painful and complicated process. x

Freecycle is also good, but some people don’t come when they say they will.

If you don’t have a Red Cross furniture shop near you, you could see if you have an Emmaus Community Homestore nearby. They upcycle furniture to sell on and will also collect from you. Our local one is brilliant.

Thank you - not sure what there is in my mum’s area - will look into that one!

I do know how you feel. I spent 15 years caring for my Mum and even during the last couple of years of her life she was in a care home I went every other day and sat with her, joined her for lunch, took her out in a wheelchair and sometimes brought her back to my house for a few hours.
My 60s just went in a flash. I have recently reached 70 and have no recollection of doing anything much for myself in my 60s. In addition I have cared for my special needs adult daughter but that’s another story.

Definitely try to get your Mum to a home near you so you can just pop in when it suits you. It takes a long time to get over being so busy caring full time.

We had to empty Mum’s house while she was in the care home which was very difficult. All her personal treasures went to her room in the care home, lots went to charity shops and quite a lot of her furniture. She had lived in that house for 65 years.

J, think about joining the local facebook group for mum’s area, and asking there where you can donate locally. Just to be on the safe side, avoid giving mum’s address, but a postcode should be OK.

Hi i am so sorry you are feeling so bad. i think it is quite normal to feel all the things you feel. I made the decision to put my mum into a nursing home . my head knew it was the only safe way to go and i chose carefully inline with my Dads decisions. to make it worse the guilt i felt Mum played Dad up cos it must have been his decision. i know it was the right decision but i felt awful especially after she died.
My mum actually loved her lead nurse and did at times say it was her home. She knew her nursing staff and the other residents. Dad was abel to visit and ate with her, this was a weight off my mind as i knew he had eaten and someone had seen him on the days i worked.
you didnt say if your mum likes the assessment unit. Being in a care setting is different and maybe not your choice but it also has good things, company safety, activities, new friends.
I hope that you get some good choices offered and that you can make those choices with your mum.
I quite get the guilt though and i expect you are really tired and anxious but also have extra time in which to be tired and anxious.
The best thing anyone said to me after Mum died was “be kind to yourself” i found that very helpful being given purmission if you like to consider myself.
Being the main support for a parent is very hard work , it takes its toll on us. I wish you all the best and hope that your choices are better than you expect