Hi, my mother is 84. She was managing with her PD, where I do cleaning, shopping, cooking and she just warms up food. I help her shower etc. She had an incident where she froze over Xmas and fell and was stuck half on her bed and half off. She was in hospital for 5 days as she also had flu. She was discharged today and I was told physio would visit the house. They did but they didn’t provide any options, stating that mum was just stiff from being at hospital but she is struggling to get balance and start to walk and shuffling a lot. I think she is going to struggle living on her own, I have young kids and my house has limited space. I just don’t know who or where to turn to get help. She is 150% in her head and she is adamant that she won’t accept carers. She owns her house and so I do not know what sheltered housing options would be. Sorry I am babbling I am completely lost right now and not sure where to turn.
Hi and welcome to the forum, @Mum101. This sounds very worrying and I can’t imagine how conflicted you must feel. We have a very friendly and supportive community here and they should be along soon to add their own experiences to the discussion.
Have you had a chance to talk to your GP or the hospital? I’d also encourage you to ring our helpline on 0808 800 0303 to speak to our advisers. We have some links to support organisations here. They could be useful.
I do hope that you’re able to sort this out soon and get some peace of mind.
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Continuing the discussion from Mother fell and was discharged from hospital and struggling to live alone :
I am very sorry to hear about your situation, the only advice I’ve could give you is for you and your mum to both have an assessment with social services to get a better understanding of what is available to you both, your mum should have had this carried out before discharge from hospital., also contact your local carers support services, their contact details should be on your local council website, good luck
Fellow PWPD X
I totally understand your situation. My mum has had Parkinsons for 20 years. She is 81. I have young kids too.
Everything that Little Nanny has written on the post is what I would suggest too. I know that the difficult thing is getting your mum to agree to help.
My mum lives with my dad who is 83 and has health issues himself these days. For a long long time, they refused external help from carers until it proved impossible for them and a critical point hit/ emergency.
One thing I would say is that if your mum is 150% mentally, it might be the time to get Lasting Power of Attorney so you can help your mum in the future when she might not be in the position to make medical decisions and you know what her wishes would be.
As emergencies have unfolded over the last couple of years, myself and my brother now have Lasting Power of Attorney and it has helped in being able to say:- ‘this is what my mum would want’ for her care when she has been unable to explain that for herself.
My mum and dad now have a rota of carers at home 24 hours. My mum or dad would not be able to cope and stay at home without it. It’s all a personal decision and every Parkinsons situation is unique. My dad truly appreciates the carers now and all the positives that they bring.
Thank you for taking time to reply. I do think that my mum - for now- could really benefit from a carer coming in twice a day. She has been on her own a long time and getting her to accept help is very difficult. Her mobility is reducing and it is becoming harder and she has fallen since this. How did you find carers and were they regular, how did you get your dad to cooperate?! I am just not sure where to start and also how do they access the house if she can’t open the door , are key safes safe?
I want to go away with my family and she is refusing carers and any respite care. I am not sure what it will take. My local authority called me today and basically rushed me off the call. They added me to a 6 month waiting list for an assessment. I need to understand options and will need to think of a longer term plan. I asked about carers but they said that my mum has to tell them on the phone that she wants a carer before they can assess her for that!!! I couldn’t believe the response I got with no offer of help or information. Don’t get me wrong, I know the system is struggling but just guidance would have been beneficial to me.
We do have the LPA’s in place
I have just caught up with your post and I see you have already received some good advice which I hope has proved helpful and it may well be that things have moved on since you wrote about your concerns. However I thought I would throw in my tuppence worth in case there is something in what I write that may help.
I think the main issue you have to address is your mother’s refusal to accept help. You say she is 150% ‘in her head’ and that makes it very difficult for help to be given because she is deemed to have capacity and therefore make her own decisions which the statutory services have to accept - even if, as seems to be the case here, that decision seems not to be a good one by anybody else involved, such as yourself. As LittleNanny pointed out you are both entitled to an assessment, yours would be a carers assessment and you can have one in your own right if you wish. However we come back to your mother having the right to refuse this if she wishes. It would be unusual if this was not offered whilst she was in hospital but if she was adamant she didn’t want help, their hands were tied.
In my experience the person in the middle of all that is going on, in this case your mother, does not easily see or accept that things have changed especially as you are around to give support. Discussion on this sort of subject can be difficult and often end up going nowhere because the person just doesn’t see it. One way to address this is to write a letter to your mother setting out your concerns and worries and the difficult position she is putting you in by refusing all help. In writing a letter you can take the time to get the words right, like noting how she is not as mobile as she was etc that will maybe make her think how it is for you. Give it to her and leave it for her to read on her own. It can be a very powerful in making someone see the reality of their situation and that the only reason things are manageable as they are is because you are picking up the pieces but that it is not a long term solution. It may be worth giving this some thought.
To briefly answer a couple of other points you raised.
Carers. As you will be aware carers are in short supply and in the beginning the service can be a bit hit and miss ie she may get different carers as the agency tries to cover the booking. However in my experience most agencies prefer to send regular carers and after a few weeks once they know your mother and her needs and is considered regular the carers too become regular. You will probably get some comments saying that doesn’t happen and there are all sorts of reasons why that may be so, especially at the moment when demand is greater than supply but that doesn’t mean the agency don’t try hard to provide regular carers to regular clients.
Sheltered housing. You will need to check the situation with your local council but most will allow owner occupiers to be placed on the list for sheltered housing. Some offer accommodation to buy but most are rented. You need to be aware however that the proceeds from the sale of her house means that she will effectively be self funding and able to claim little until her monies fall to the savings limit to claim benefits. In my area there is something called flexicare, it is called by various names in other areas and not all areas have them but basically this is a building of self contained flats within a block - so you have your own front door - but the care staff are on site to give help as needed. The other option is to look at privately provided sheltered housing and usually they are a mix of accommodation to buy or rent with varying levels of care available.
An option you may not have thought of and although I suspect the answer will be no way, it is nevertheless worth knowing about and that is moving into a care home but not just any care home. There are new private homes cropping up all round the country that are completely different to the standard care homes everyone knows. These are more like 5 star hotels, the care team are part of the staff, there are all sorts of facilities, activities etc going on and it is worth looking to see if there are any in your area and going to have a look. Most fund these by buying an annuity from the proceeds of the sale of the property - make sure you get specialist advice if you do look into this. One of the benefits is that your mother will have company.
Key safes. These are quite safe if you only give the code to those who need to know. You can get cheap ones but I would always recommend a police approved one which give very strong protection from forcing it open
I hope some of this will help you move forward with a few more ideas.
Good luck and best wishes.
I have just seen your detailed reply. I am so grateful to you for taking time to help. Thank you x
You are most welcome Mum101, how are things now? I know a few months has passed since your post but situations such as yours are rarely quickly sorted out, so I do hope you are looking after yourself too, that is as important as anything you do for your mother.
Hi, well we made a decision to change our house and move mum in. Then I can get carers and she will feel less vulnerable. However building works are ongoing. For the last two weeks she has been frozen very often in bed, for three days she has not been able to get up from bed (stuck and wet herself? and saying weird things (like shes taken meds at xyz time, got up and gone to the toilet, eaten stuff when she has been stuck in be d all day) . I have checked uti symptoms with her and all seems fine. I cannot figure out what has changed and who to speak to on it - GP, Parkinsons unit at hospital? What could be happening here.
Also been enquiring about respite care for me and my young family to get away. The costs are mindblowing. Coincidentally my FIL has has a stroke, he was the carer for myMIL with advanced dementia. Just cant see past anything right now.
I’m not surprised you can’t see the wood for the trees with all that’s going on, not least the building works which, however considerate your builder, can be very difficult to live with and always seems to take longer than the estimated date.
I can understand it is difficult to know which way to turn and I am wondering whether your best course might be to ring the helpline 0808 800 0303. They are very helpful and have a lot of resources at their disposal. Perhaps they can advise you on who to contact or the best order to contact those you have listed regarding your mother along with any questions you may have about your father-in-law’s situation - it must be horrendous trying to sort out both - and also perhaps give you some information on respite care.
Apart from needing some immediate help to find out what is going on with your mother, my gut feeling is that you need an assessment (or reassessment if you have had one previously) as your circumstances are radically different and your mother may be willing to accept an assessment now. You can certainly have a carer’s assessment in your own right. Re Your mother and father-in-law presumably some discussion has or is taking place regarding what happens next and whilst this will be seen as a separate case you are of course involved with both and this should be reflected in any carer’s assessment you may have.
Sorry not to be of more help but I think talking to the helpline will help to clarify your thinking so that you can start to see a way forward and not feel so completely overwhelmed.
You don’t say how severe your father-in-law’s stroke was but I do sincerely hope he is making a good recovery - that will at least be a little flicker of light at what must feel like one long, dark tunnel at the moment.
Remember the forum is open 24/7 for whatever you need that may help you get through this - it is a safe place to let off steam, weep with anger and frustration or just feel sad for how it all is at the moment… It may not seem like much but the act of writing it down and posting in can get it off your chest and make it feel a little lighter. Do please use it if you feel a need.
Take care of yourself. I will be thinking of you and wishing you all well.