Hi. New to this forum. I’m Richard. Wife has Parkinson’s plus other problems. Becoming more disabled & I am feeling a bit overwhelmed. Who do I talk to.
I have received several responses to my post but cannot find out how to reply to the responses. Can someone explain?
Most frustrated. I am fairly tech savvy but for the life of me cannot find a reply button or icon.
Hi Noddir, welcome to the forum.
Are you seeking advice re practical help, benefits or emotional support? Or perhaps all three?
Feeling overwhelmed is so hard, it sounds like you do a lot of caring.
Are you very tired.
Money can’t make anyone better but can make life easier! Do you have a dishwasher, tumble dryer, gardener, disabled shower? Do you have Power of Attorney? Claimed Attendance Allowance if over pension age, or PIP? Claimed exemption from Council Tax? Make a list and gradually plod down it, not all at one. I’d suggest a lever arch file and some dividers. Bring together all your own financial papers too. Streamlining things at home helps too, but difficult when you are a carer. Try to think what category jobs come into. Either vital, things relating to money, jobs that can be dumped altogether, ironing, some gardening, and things that aren’t essential but give you pleasure.
If you want emotional support and information then do you have a local Support for Carers? Search via the internet. They offer meetings in many cases or if this is an issue with regard to getting out, a telephone befriender. Often they have been Carers themselves. Local Support for Carers also might be able to help with benefit advice and what support if available locally.
I agree with BB - make your life as easy as possible, if you can afford it, maybe a cleaner to help take some of the burden off you? Caring is horrible and in most cases it gets harder rather then easier.
Hi @Noddir - adding my welcome to the Forum.
To reply to a post in a thread you can either click on the grey “Left arrow and Reply” icon at the right at the end of a post or if you scroll to the bottom of the thread, you’ll find a blue icon with the same word. Click on either of those and a window opens at the bottom of the screen and you can type in there before clicking on the blue “reply” icon which is then at the bottom left. Hope that makes sense!
Helena has commenting that Caring is horrible - yet I agree. You see the one(s) you love unable to do things which we all take for granted and needing more help as time goes on.
My Dad cared for Mum for many years as she had MS and as she deteriorated I was always amazed how he managed to keep going - up at least twice a night to the loo and even then having to change the bed at least once a night. Lifting, helping her eat sometimes, being at her back and call; having to think three steps ahead; not being able to go out unless he had a “sitter”. Now I find myself in a fairly similar situation and wonder how the hell I get through each week. It’s because Carers have special powers that no-one else knows about.
Seriously, anyone on here can empathise with you. We all understand the pressures and it doesn’t help when people tell you that you’re doing an amazing job or they are in awe of you.
On here you can vent, ask questions without anyone judging you, have a darn good moan and share the ‘funny sides’ of caring (the “black humour”) and have shoulders to cry on when you need it and no-one else is there for you.
Just back from morning dog walk - which is one of my ways of getting a little time to myself before Graham gets up and I have to face the realities or maybe another wet bed (despite pads and pants etc). Plumber in on his way to service the boiler so a busy day in store.
If you want to have a general chit-chat, check out the Roll Call thread where we tend to have a gossip about our day and share (or in my case recently) have a moan.
Yabba dabba do! Finally managed to post a reply to all your helpful comments. I had to log out & back in again before the ‘reply’ icon appeared.
On to my situation
Hi. Thanks for your reply. I guess it’s mainly practical help and advice I need at present.
Bit more info. We are both 75. Parkinson’s is at a fairly advanced stage.
Fistly I am having difficulty coping with my wife’s hallucinations which are becoming almost constant. Sometimes also delusional.
Secondly, She is also beginning to lose mobility and needs help getting from place to place. I have invested in a wheelchair, a walker, wheeled trolley, & zimmer frame. Also just got a stairlift installed. I am concerned about how to cope once she is no longer able to get about by herself. Who should I talk to?
Sorry for my rather initial abrupt reply. To clarify what I really meant was to try and ‘carve out’ some kind of support system before things progress…
What is your relationship like with her GP? I would initially suggest you talk to them. I wonder if there is a Helpline for sufferers of Parkinson’s disease? If so maybe they could offer help and support? Are you able to get out of the house? Do you have any family support? It may get to the stage where she needs 24/7 care which may be beyond what you can offer. It really does sound as if you are going the extra mile to keep her in her home and I admire you very much for that. Do you get any kind of help with regard to Carers coming in to maybe offer help and support with personal care?
I echo Chris - Roll Call is a safe place where we can all share what is going on in our day - good and bad, and get and offer support. It is very friendly - just lurk awhile if you do not want to ‘dive in’ initially. It is very supportive and non judgemental and we find (black) humor too.
Welcome, Noddir. I think as a starting point I should ask if you’re in contact with Parkinsons UK? They have services in different parts of the country and may be able to offer support or suggestions. This web page is an example of some of the information out there, and I think your situation might be similar, even if it may not be the same: Thinking and memory changes | Parkinson’s UK (parkinsons.org.uk) I was certain my Mum had this but the Parkinsons element developed very late and it was put down to advanced dementia.
Whatever the underlying problem, caring is hard work and not for the faint-hearted! Take a good look around the forum, and if you want to join in the Roll Call, you’ll be very welcome!
Can I get any advice about choosing a good home care provider? I have looked at a couple but the costs seem astronomical & level of care is not quite what we would need.
Noddir, I guess you have found https://www.carehome.co.uk/ already. If not, it shows the speciality of the care homes and has reviews and the Care Quality Commission (CQC) Rating. Some indicate a bit about price but in truth they are all very expensive. When I went round the homes for my Mum I always asked them questions about care and things like social activities. If they tended to refer to process or procedure the home is likely to be well managed, if they refer to someone by name as responsible for anything then it may be a ‘hero’ culture and if that person leaves then that process stops.
On a grosser side of things use your nose, it shouldn’t smell and boy some did!
hello , i am a former carer. There is a former carers group on here that meet every other month on zoom. The next meeting in January . Also join in on very good share & learn things. I hope this helps. Regards Amanda
Just to clarify, I am looking at in home care rather than a care home.
@Noddir Hi, I hope you’re well and managing to get some sleep and rest
A few thoughts:
- Before embarking on care at home, I would suggest writing a list of specific tasks, actions that you’d like help with.
- Please note that setting up care at home can be time-consuming and stressful, but also worthwhile doing before more issues/a crisis arises.
- it’s a postcode lottery in terms of availability, quality and financial accessibility to care at home click here on a checkpoint question I asked the forum: Check on assessments and funding
FYI here are some links to help your search. I’m sure others will add more thoughts and ideas soon
a few agencies mentioned by members:
Did you have a needs assessment done?
May be best to call the helping too: Helpline and other support | Carers UK
Under some circumstances care may be entirely free. If your wife has under £23,000 in her own name it will be normally be free or subsidised. Sometimes an assessment can be joint if you have under £46,000. It may be free without a Needs Assessment after an NHS Continuing Healthcare Assessment. Be sure to read more about this. A postcode lottery I’m afraid. Carers UK has an excellent helpline, they can talk you through all the options in greater detail once the holidays are over.
Take a look at this link. This is the best resource for finding a care home https://www.carehome.co.uk/
Ok. Thanks. Although as I have said I am looking for care at our home rather than a residential care home
Things have moved on. My wife is in hospital and I may need paid for nursing/ medical care for her at home. Where might I find this?
Noddie, I’m very sorry to hear that your wife is in hospital. Carers UK has an information booklet about discharge procedures, if you look at their main website you should find it. As your wife is very poorly, find out more about NHS Continuing Healthcare. I know that Parkinsons UK has been very proactive in this area, you should find out more on their website.
At one time five close relatives, in a five mile radius, were all entitled to highest DLA! I reached breaking point. If you feel that you are no longer able to meet her needs at home, then you must tell the hospital staff.
I know it’s a very difficult thing to admit. My own mum was in and out of hospital for years. One day I thought “I just can’t do this any more” about the same time mum realised she was just too frail to go back home to live alone.
Overcoming resistance. I have arranged to for a carer to come in 3 days a week to help with household jobs & provide care for my wife , especially when I am not there. I am encountering some resistance from my missus as she insists she does not need a carer where it is patently obvious that she does and I can’t be there 24/7, although that’s what I have been doing for the last few weeks. Any tips for overcoming this resistance?