Guilt ridden, elderly grandparent

[Washingnerd]

Hi all,
Please bare with me it's my first thread but I'm desperate for advice.

My grandmother moved in with me, DH and children 5 years ago she was given a terminal diagnosis and her life expectancy at the time was very short, she brought me up as a child and is like a mother to me so I wanted to care for her and do everything I could. Fast forward 5 years and she is still here we've had a great few years with her and she is generally independent, the last few months her memory has deteriorated aswell as her mobility but she has managed to get by. Last week she fell twice, the second time I could not lift her so I had to call an ambulance, she was so bad on her legs that they have kept her in, this has made her memory issues worse and she has fallen again in the hospital. Luckily no injuries from any falls.

No ideas why this is happening, nil medically wrong. The hospital is keen for me to take her home, she lives upstairs in my house and occupies 2 rooms which is like a mini flat. The problem is is that she can barely walk, using a Zimmer frame now and needing 1-2 people for assistance, she is mildly confused periodically (unsure why shes in hospital, doesnt know where she lives), and now occasionally incontinent. They want to get an ambulance to bring her home and up the stairs because there is no way she will be able to climb them herself.

To top all of this off she is giving me a real hard time I'm not sure if it's the confusion or what but blaming me for her not being able to come home yet. I have explained time and time again my concerns but I'm left feeling extremely guilty.

I'm really down about it all part of me thinks I didnt sign up for this (we did want more children but have no room so I have sacrificed deeply), how on earth am I going to manage her at home myself and DH work FT and have 2 kids, I feel trapped and guilt ridden into accepting her back which I feel is my duty, shes begging me and making me promise not to put her in a home, we cannot afford that or any personal carer anyway. I'm sorry for my kids because I dont know how long this will go on for, will we ever be able to go on holiday, probably not because we will have to care for her she will never be able to be left on her own at night time even if we could manage in the day.

The hospital have agreed to some step down rehab which she will hopefully move to shortly this is only short term then she is to come home.

Any advise from anyone who has been in a similar situation, we are very close and I love her dearly

Oh my gosh, that sounds tough. I don't have any particular experience so can't really offer useful advice. However, please don't feel guilty. You have done/are doing loads and sound like a truly wonderful granddaughter. Your love for her really comes though in the way you talk.

If her memory and mobility have declined lately, could possibly be moving into the next stage (so to speak) of her terminal illness? I ask that gently, not meaning to upset you. It can be hard when in the midst of a tiring and taxing situation to feel that it will go on forever and that there is no end in sight, but that's just not going to be the case on a long term basis (as much as the last few year must feel long ). Can I ask what the diagnosis is?

You are doing the right thing by raising questions about her care while she is still in hospital though. If there are needs that can't be met because of xyz, they are more likely to get addressed with freeing up her bed as an incentive. Once she's home it's even harder to get the help you need. If you are prepared to have her discharged to your home ultimately, can you get occupational health to come out now and put recommations in place for her (that said I don't know quite how it works at present as my OH experience is from years ago).

Hopefully lots of knowledgeable posters will be along with advice

My MIL took her mother into her home as she had a terminal cancer diagnosis and a few months the live.
After five years she started to suffer from dementia and was eventually put in a home.
Mil felt terrible but it really was the best thing all round.
What you can do for six months isn't what you can do for ten years with increasing dementia.
Personally I would get an assessment of her needs while she is in hospital, once she is at home she will drop on the urgency list.

Please don't be guilted into this. It sounds like she needs full-time supervision/care and you can't possibly do that. The hospital will be very keen to move her back home as that unblocks a bed (and is cheapest). If you make it absolutely clear that this is not going to happen, they will have to come up with another option. Once she is back under your roof, it will be very difficult to get more than basic help unless/until she is hospitalised after another fall. This could eat up your children's entire childhood. Tough though it seems, you simply don't have the wherewithal to look after her safely. Could you visit some local care homes and at least see what they're like? Much better to have her safely cared for with frequent visits from family than to build up resentment in a situation you can't cope with.

Thank you all so kindly for replying to me at this hour

She was diagnosed with cancer, had a very short period of treatment which was aweful so decided to give it up and was given 6 months to live. She had a brain scan, xrays and blood tests and they dont think there is any relation to her terminal diagnosis, it's just old age, although no official diagnosis of dementia we are awaiting an appointment with the memory clinic. I asked them to refer to SS yesterday for an assessment and they said because she is going to rehab they wont do one as they expect she will improve, I am a nurse myself and looking at her there is no way shes going to independently mobile without any assistance. I'm worried I will be pushed into bringing her home from this rehab place when her time is up regardless of ongoing needs

Hi OP,
You absolutely don't have to take this on and shouldn't feel guilted into doing so by her or the hospital. When she moves to rehab make it absolutely clear that although she has been living in your home you can't and won't be in a position to be her full time carer. Insist on a proper assessment being done prior to discharge along with a home assessment.
To leave a vulnerable elderly lady who can become confused and is prone to falls alone upstairs all day isn't safe, I have been through this with my own mil and her quality of life improved immeasurably when she moved into residential care, she had company, was kept busy and engaged. When I was caring for her even though I cut down my hours (pushing us to our limits financially) because I had a family to care for too I simply wasn't able to care for her at home in the same way. Coming home from work to find her distressed after having an accident was harrowing for everyone, when a teenager comes in from school and is greeted by the smell of shit from grannies room the distress reaches a whole new level of unacceptable. Her falling and being in hospital was a blessing for all concerned, my DCs needed me to do what was best for everyone, I felt the guilt but stuck to my guns in refusing to have her back. She is very happy we visit several times a week and get to spend quality time with her.

There comes a point where you cannot be a nurse to her. The NHS will do whatever they can to make you care for her due to cuts but if you work full time you are putting her in danger by allowing her home. Sadly we no longer have a society where the Home parent can care for the elderly. This is not your fault. My mum felt the same when my grandmother began to suffer from dementia. She had been a stay at home parent for many years, but after my parents divorced she had to work again. Her siblings expected her to take it on but where they expected the money to come from is beyond me.

You have done your part. She needs to be in a care home as the NHS cannot offer sufficient home care. She may blame you. But on her right mind she would know it's not your fault. If you take her back... she may not live long as she cannot live independently.

I'm so sorry. Elderly care is a major failing of the NHS right now. (Not the carers or nurses fault just budgets).

"not to put her in a home, we cannot afford that or any personal carer anyway"

I think it's not a question of whether you can afford it, but whether DGM can afford it. If she can, she will have to pay, if she can't then she will get funding.

But it seems like this is the inevitable outcome if she is no longer mobile.

Hi
I just wanted to say I'm going through a similar but not quite situation & I totally emphasise, it's a real burden & it's tough.
But they say, nobody can do anything to us unless we allow it at a soul level. & please forgive me but you mention that part of you thinks you never signed up for this but yet, quote: ".... she brought me up as a child and is like a mother to me so I wanted to care for her and do everything I could...." 🙂
I only know this worked for me as I was stuck in an impossible situation where I literally had nowhere & nothing to turn to for help, I'm not religious but I read about Mother God, which the gnostic Christians refer as the female aspect of God, who looks after us as Her children, after all we are made in the image of God...the book said to pour out your heart to her, ask for what help you want, also make sure to sign it with "I ask for this or something better to manifest for me for the Highest good of all, Thy Be Done. I then burned the paper to purify my emotions about the situation (words have power & carry energy, so all my anger & pain about the situation which I wrote down was burnt up by the fire...). I then left it to Her. It didn't turn out how I wanted it but far more beautiful than I could possibly imagine.
You don't need to believe in Her, nor have faith. Just give it a shot. It may be that there's a spiritual lesson for you which is a gift, compassion, or patience or it might even be to let go (of her). While the situation is very painful & difficult, you might one day look back & regret it if you hadn't at least done your best to be of service to her. If it wasn't painful or difficult for you, then there wouldn't have been any value to really show you love her? 😥

Trust & a solution will appear.💕💕💕

You have done an amazing job so far but please do not feel guilty about saying this cannot continue.
Has she been assessed for continuing healthcare funding? Attendance allowance etc?
You cannot sacrifice your life and your family’s life.
Unsafe discharge.... magic words. Try age uk etc for support.

She needs more care than you can provide in your home.

Hopefully she will be moved to somewhere near enough that you can visit regularly.

Please do not feel guilty (easy to say) as you have done a wonderful thing.

From my experience the hospital will be desperate to send her home to you and will be pushy. Do not accept this. Make sure you speak to social services within the hospital. They can arrange carers. If your DGM has no money then this will be funded (they means test). All this must be in place before she comes home. The physiotherapists should access her mobility and the occupational therapists should look at her living arrangements.

I cannot express enough that all that needs to be done before she comes home. You'll have a battle to implement it once she's sent home without it.

You're in an impossible situation. You have GM wanting you to promise not to put her in a home, but you cannot provide 24/7 care for her 365 days a year. It's impossible for you and not fair on your children. So you're going to need all your emotional toughness to stand up both to the hospital discharge team (whose main focus is to free up a bed - never forget this), to SS, and to your GM.

Work out what you're prepared to offer, then step back from that, and make that your non-negotiable line.

Ultimately, you can give your GM something no-one else can - love, and help in making the best decisions for her. But your ability to do that will quickly suffer if you are resenting her every need and dreading looking at your phone in case it is another emergency.

Thank you all again for all your advice it's really appreciated and definaly made me feel alittle less guilty. @Jeddi like what @dreichXmas said what you can do in 6 months is not what you can do for 5-10 years without it having a big impact on my own family, I am only 33 years old so giving up work to look after her is unfortunately not an option I work shifts so I can be out of the house for 12 plus hours at a time, my husband works away in the week and can be gone for 2-3 days at the most which we try to manage between my shift pattern

I think when she gets home you need to ask for an assessment, it is a fire risk if she has no escape route anyway so its not suitable accom. They are focussed on bed clearing unfortunately.

Get them to check sodium and magnesium levels - we had the same with my Mum and in the end this is what it was causing confusion and driving the dementia faster - when we got control of these the dementia leveled out and wasn't as bad

My spelling was dreadful in my last post, sorry.
MIL felt very guilty placing her mum in a home but she settled well and was I think happier.
MIL worked so couldn't be at home during the day.
She would never have signed up to care for years because it wasn't practical but she wanted to support her mother for a few months if she was dying.
It was fantastic that her mother lived for another ten years but the living at home put a lot of unnecessary strain on everyone.
Don't feel guilty OP. You can support your GM by visiting in her new home, supporting staff there etc.

You need to tell the NHS staff that you will not agree to her returning home until an assessment of her needs has been undertaken and a care package has been agreed as you are unable to be at home to provide the care she needs. Be firm in this. Do not agree to her coming home first.

Good point, she can't deal with this all on get own. Plus is feeling guilty about it. This is too much for her. Also, she'll be doing more good for all involved as God forbid, what if she falls down & hurts herself? She needs to tell them it's for her own safety...
When you do what's best for you, it benefits everyone. 🙂

Be firm about being unable to care for her.
In Australia you get an occupational therapist to do a home assessment for rails and equipment.
It sounds like your home no longer meets her needs and she needs more care.

Be assertive. You are not her carer and will not perform personal care. If she comes home to you she needs to have carers coming in to look after her every day, and especially while you are at work. If she has savings your DGM will probably have to pay for this: if not it will be social services funded. No carers, she can’t come home - it would be an unsafe discharge.

Have you spoken to her Drs? When in a similar situation I had real trouble with the bed manager and the SW, but my DM’s Dr agreed with me and would not discharge her until we had something robust lined up.

My DM is now in a care home. She’s much better when she’s there. At first, when she was at home in between periods of respite care she became unwell very quickly. In the home she’s well fed, drinks plenty and gets all the help she needs. She’s not happy about having to be there, but knows it’s the least worst option. At least when I go (3x a fortnight) we get to go out for lunch and walks (well, I walk & she sits in her wheelchair!)

DM sold her house to pay for the fees, but if she had not she would have SS funding. In your DGM’s case, because she has cancer, she should be eligible for (I think) Continuing Care allowance. You should definitely be able to get Attendance Allowance.

I could not have her living with me. I do feel guilty about that, but I don’t feel guilty about putting my DH and my mental health first. You should not feel guilty putting your children first.

You need to tell the NHS staff that you will not agree to her returning home until an assessment of her needs has been undertaken and a care package has been agreed as you are unable to be at home to provide the care she needs. Be firm in this. Do not agree to her coming home first.

This ^

Also her confusion will be worse when she's not in familiar surroundings

Carers' breaks and respite care:

Respite care means taking a break from caring, while the person you care for is looked after by someone else.

It lets you take time out to look after yourself and helps stop you becoming exhausted and run down.

There are lots of respite care options. They range from getting a volunteer to sit with the person you look after for a few hours, to a short stay in a care home so you can go on holiday.

The person you look after could go to a day care centre. Or, a paid carer could visit them at their home to look after them.

Your local council or local carers' centre can give you information about local support.

First step – getting assessed

Local councils will only fund respite care for people that they have assessed as needing it.

So if you want the council to pay for respite care for either yourself as a carer or the person you look after, it's important that you both have an assessment.

Carer's should have a carer's assessment.

The person you're looking after should have a needs assessment.

From this link: www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-breaks-and-respite-care/

If she is going to inpatient rehab that is because the therapists believe she is not yet ready to come home but hope her mobility will improve back to a level where she could manage at home, however they are still able to organise a package of care from here. However if this is simply a step down/interim bed in a care home this is different. If the plan is for inpatient rehab I would recommend going along with this plan as this is her best chance of having more intensive therapy to improve her mobility and function. If it is not then social services will not consider a care home placement before formal care at home has been trialled first except in exceptional circumstances. Just make sure to be very clear on what support you can and cannot provide. E.g. if you are happy to support with meals but not with personal care

Do not let her move home, once she is there it will be almost impossible to get her moved. She needs a social worker to do a full assessment before she is discharged because there is no way she can continue living with you.

Remember they are not working on your behalf and it is much easier for them to get you to accept responsibility regardless of the effect on your household.

Shout unsafe discharge loudly and repeatedly.

Do you have an assisted living facility locally? It’s the mid step between sheltered and care home and great for maintaining independence but with help where needed.

Stay strong. You need to do this for your GM as well as your family.

That would be a hugely unsafe discharge. She's confused and falling, yet she will be home alone, upstairs for long periods of time. What on earth are the hospital thinking!

Don't be guilted into this in the current circumstances, you would come home to find her seriously injured or worse, he needs a full assessment and plan for the future.