Hello Nickie,
Ann @Mrs5K et al have given some excellent advice already and I think the best thing for you right now is as Ann says, talk to the stroke consultant, the rehab/care team, the housing team where your Mum is on the waiting list for the bungalow and the Stroke Association who between them will be able to answer the specific questions you pose to them.
I am not trying to pass the buck here. As Ann says I am looking after my Mum with help from my sisters. Mum lives with me and she was living with me before she had the stroke.
Whilst very independent, she did take advantage of us being around to get things done for her as needed. She also had lots of friends around here and so she had a wonderful life.
Each stroke is different and ours is no different. Mum was 89 when she had the stroke and it was a severe stroke which destroyed a lot of her brain and left her totally dependant on two carers for support.
Our intention was always to look after Mum at home but we had not anticipated having to care for her as a totally dependant person. The home was not ready and needed adaptations but to put it bluntly with her age and condition, no one was prepared to “invest” in her care. So the home adaptation did not happen for over a year during which time she was trapped in her room.
We did get equipment e.g. medical bed, manual hoist, riser recliner chair and a beside table but everything was “minimum” to get by rather than designed to aid full recovery. So for us it was always an uphill struggle and we had to fight for a lot of the things that others are given as standard because they are younger than Mum.
For you @Nicola07 , you should be aware that you can get a lot of things, but you may have to ask for them - if your Mum is over a certain age, expect to have to fight hard, but fight you must.
A lot will depend on your Mum too. If she shows willing and is able to demonstrate she has ability / potential, this will help her cause.
Concrete answers are there - you just need to ask the right people. Do not give up and to not take no for an answer.
Your Mum has got potential - she responds and says the odd word, smiles and laughs. She sleeps a lot which is great because she is allowing her body and brain to heal - plenty of sleep is required.
My Mum was in bed for pretty much the whole of her duration in hospital (just under 4 months).
The first month in bed on a IV drip and under obs. During this this she fought hard - moving her head a lot, moving her non-paralysed hand and leg etc. She did not get any physio or rehab during this time.
After a month or so on IV drip, we questioned why she was not getting any feed (nutrition) like other patients in the ward. Mum was nil-by-mouth and very “unresponsive” - aphasia / communication very hard. This resulted in an NG tube being inserted (a nasogastric (NG) tube is inserted to provide a way to deliver nutrition, medication, or fluids directly into the stomach or to remove stomach contents). Whilst this facilitated some feeding it was still not anything like that required as each time the nurses had to satisfy conditions to ensure the tube was still safely in place. So for the next month or so Mum got some feed / nutrition via the NG tube.
The NG tube is temporary and after a month, this had to be replaced by a PEG tube (a PEG (Percutaneous Endoscopic Gastrostomy) tube is inserted to provide a means of feeding a person directly into their stomach when they cannot eat or drink enough to maintain their weight or health)
All this was being done as minimum to keep Mum “alive” and comfortable aka palliative care (at least that is how we viewed it) as there was no realistic effort to help her with any rehab/physio etc.
We were told it would be difficult to look after Mum at home due to her care needs and we should look to find a suitable care home. We had a look but there was nothing suitable and we always expected Mum to be cared for at home anyway.
Bottom line, Mum came home but with none of the home adaptations in place - big mistake.
This made it harder than necessary and also limited how much rehab/physio could be provided at home. But we carried on - Mum kept fighting and she continues to fight today.
We did get some home adaptations after a year or so later and today she is slightly better off than she was when first sent home.
We provide pretty much all of the care - and we manage all the things. The GP is not interested, the community team is not interested. The only person who shows any willing and proactive help is Mum’s dietician and she has been a godsend as was her predecessor.
Social services try to cut back the care each time they do a review and on occasions they actually did cut it back and we had to fight to get it reinstated to the previous level which was not easy.
Not meant to scare or deter you from caring for Mum at home, but just realistically stating the facts and as it happened to us.
Mum is happier, as are we and we would not ever think of doing anything different in terms of where to care for her. For sure, we would appreciate a lot more proactive help and support, but the reality is you will only get the minimum they can get away with - it’s called AGEISM in our case, but we are out to debunk the myth.
Tomorrow, we have a private neuro physio coming to do an assessment and we fully expect this to be the next stepping stone to greater thinks.
For anyone reading this - Mum was 89 when she had her stroke, was not expected to get through, got minimal help, has fought hard and worked hard on her own and she is living proof that there is life after stroke.
@Nicola07 - I am sorry I have talked about my Mum and our journey so much, but in a way this tells you what is possible for your Mum.
I am here and happy to give you specific help as required, but without knowing the specifics of your circumstances I cannot offer more than I already have as each case really is unique.
I will send you links to my other posts already on this forum which you can read at your leisure.
Wishing you and your Mum all the best.
Namaste|
