Geoff and I have been on this PSP journey for over 5 years now, albeit with an initial diagnosis of FTD.
We have had live in care since September last year and more recently this was increased to full time live in care.
We have had, to date, 9 live in carers in our home.
The care industry, in my opinion, is not necessarily about the desire to care, but in my experience when dealing with agencies and individual carers, it is more about money for the proprietors and a place to live for the carers.
Yes, we have had a couple of good carers and in particular one, who was outstanding. We were so sad when this 37 year old man told us he was moving to Germany to start a new career (3 times the pay) with his partner. We have also had some appalling carers and believe me, I have not tolerated this but this has led to increased stress and an attitude from the managers because I have dared to challenge in order to ensure my husband gets the care he deserves.
Physically and mentally I simply can no longer care for Geoff on my own.
The final straw was a carer who was impossible, he kept live worms in his room, brought algae from the dykes home in a plastic bag and did not think there was any hygiene issues with this. However, more importantly he was not medicating my husband properly, ignoring the dosages, did not provide adequate personal care and was constantly challenging me when I was trying to point the issues out to him. He is now subject of a serious safeguarding investigation.
My mental health has suffered due to the abuses of trust (not all covered here) that this carer inflicted upon us and under the guidance of our GP, so that I can rest and recover, Geoff is in a nursing home for respite.
I am now in the worst dilemma of my life, in so much as I now have to decide what is best for both of us.
Do I keep Geoff in the nursing home? Just around the corner from where we live, which means I can visit every day (which I have been doing). Or do I bring him home, where I will care for him with the help of more unknown, untried carers? Risking more stress and upset as I have now lost all faith in this care industry.
Geoff still has a level of capacity and we love each other, anyone who knows us will not doubt this fact. But I don't know what to do.
I need advice and guidance from you guys who might understand how difficult and painful all of this is. I simply do not know which option is for the best for either of us.
I would appreciate your honest advice.
Pam
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D0ttieL0ttie
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Pam so sorry you are having so many problems with live in careers, we also have live in care, we had Anna for 2 years she was amazing, on her breaks we have had a couple of useless ones, a man in particular was bad,he has not come back. A lady who thought it was acceptable to do in line shopping, had the office talk to her she pulled her socks up, she is very good now, she is in her break, have another lady very nice, had to tell her a few times about medication, and switching on the chair cushion, but I suppose we have been lucky. I have to say we need to clean the bathrooms we all use them, have to be on top of it. We have had a few bad moments, if you look back on my post I was really stressed out with one career, but office sent someone in and we sorted it. Also new ones don’t want to ear with us so I have to give them 35 pounds a week for there food, which I think is better. So sorry you have had so much trouble, where are you based? They did mess up this time, our permanent career is away for 5 weeks and we are going to have two careers in that time new in coming on Wednesday, I am away for a week the end of june, told them I wasn’t happy, hopefully new one will be ok. Pam so sorry you have had these really bad careers, sounds like they have traumatised you, I know you just want to keep your husband at home. Feeling so sad you have gone through all this. Yvonne xxxx
Thank You Yvonne. We have had good ones but I have learned by talking to them that they all have reasons for live-in care that have no association with the work they do. Sending money to their homeland, homeless and living with relatives, flown in from Greece x 2, Spain and Chech Republic.
We live in Cambridgeshire and used Helping Hands, who were OK but they source the majority of their carers from abroad and then we went locally to BueBird who dis-engaged with me because I dared to challenge them on what they failed to deliver and who they sent.
The carer they recruited for us was allergic to cats, didn't like pets, we have a cat and dog and she had told the agency this. The next was this one under investigation.
Then CHC sent an agency called Four Acres to do the care plan for emergency care once the rogue carer had been kicked out! I explained, as I always do, the need for someone experienced, then a lady turned up who Four Acres had recruited outside of their agency and had never done care work before.
She spent the whole evening telling me how she had lived in Hungary with her partner who had died, his children had contested the will and so she was living in a flat in London with her son and his family so this was her only option.
She was here 3 days, was keen to cook and wash the clothes but was impossible with care for Geoff and could not be left with him.
After that was when I finally went in to serious melt-down and contacted my GP.
Dear Pam I’m terribly sorry to read this and I do not disagree with what your saying about care agencies! They are all in for the money! My one regret is that when I was younger I should have got into the care industry and opened a nursing home that would have been full of love. I don’t tolerate poor care, end of! It makes my blood boil and my heart break!
Sadly Pam I understand exactly where you are and my best advice to you is that Geoff stays in the nursing home where you can go back to being his wife and not his carer. I’m not saying for one minute that this won’t be without issues/problems because sadly life and especially Psp isn’t that simple! But you can deal with it all easier without the sheer exhaustion and any problems you have, you just nip them in the bud quickly!
For your own health and mental health please really think about what I’m saying, you will feel guilty, I feel it every day as does my mum! But it is extremely difficult to keep on caring for someone with Psp because in the end it literally half kills you, I know this for a fact!
This home is just round the corner from you, which is brilliant, my Dad is 11 miles away, but his home is 95% good.
Sending you much love and strength at this truly difficult and heartbreaking time x
Geoff wants to come home, but he is in respite until the 19th June and so I am hopeful he will settle and understand the wider picture. Lots to consider and I am nowhere near a final decision.
I was able to nurse Chris at home until he suddenly became really ill and went straight onto palliative care at home, which was brilliant. I always realised that there is a limit to how well I could have managed. I wonder if now it is better for both of you for him to be based in the Home which you seem to have very conveniently close. The stress you have experienced sounds so exhausting. Others have struggled with the inevitable guilt but you must look after your own health too.
I am basing this on our experience. You and Geoff may be different.
Psychologically not living at home will be a big loss for Geoff. You will likely feel a lot of guilt too.
However when Liz went into the home we were again able to be husband and wife emotionally and not patient and carer most of the time.
If he is able to get home once in a while that's even better. Liz loves coming home and I get double guilt on those days, but it affirms her home is still here.
Yes, care agencies were a nightmare for us too. They added so much extra stress to our lives. We had four agencies over three years! We had everything from agencies where we never knew if they were coming and no one picked up the phone, unsafe carers, rude carers and here and there a few superb ones.
Homes are just the same. There are some atrocious ones who still manage to pass their CQC inspections with 'good'. (I have one particular one in mind). So its important to visit it, together if possible. Try to go at lunchtime and ask to see the food. Doing that is quite acceptable. If you have contact with any community nurses ask them for their opinion.
Finally when you do take that step expect to make yourself involved passing on issues to the senior nurse on duty and ironing out glitches as they learn about his needs. Also I would get hold of some of the PSP information articles, they are online and make sure you bring them up to speed on PSP. Probably the same way you had to for care agencies.
Only you and Geoff know when it is time. I delayed the step too long and was at breaking point when we finally too that step.
Wishing you both the best.
Kevin
P.S.
If you google the name of the home and add the words CQC report, you should find their latest inspection report.
He is at a nursing home walking distance from our home and has been going to day care their twice a week for about 18 months now and they know him well. He has also had planned respite on 2 occasions.
You are absolutely right about differing standards of care and it is about the carers and those in charge and as in all homes, I would proffer, their are days when his care is excellent and days when it is not.
I hope to speak to the senior manager tomorrow to discuss options and part of my conversation will be to explain that I will be visiting unannounced and regularly (well a bit like a rash) ! and will highlight any issues, but they know me!!
I have a new agency lined up but they were not due until 19th June and so I have not signed anything yet and will wait to see what all of the options are and how Geoff settles.
I can't add to the wisdom of Kevin, Jean and Amanda: I only add my voice to help strengthen you as you make the decision. We all want the same thing, I think: for our loved ones to be healthy and at peace (if not happy!) The painful decision comes when they may be happier at home - but not healthier there; or they may be happier and WE are not healthy! It's a decision that no person should ever have to be put through - and you have my heartfelt understanding and sympathy.
Ultimately you both have to be safe and as healthy as possible or it is simply a non-starter. If you end up with a stroke or a heart attack, not only will your beloved be in a care home - he will also be heartbroken without you to help him through to the end of his journey!
It is a horrible situation to be in. John is now in a care home as I cannot manage him any more and I feel bad every day when I visit. he is safe, warm and looked after even though it is not what I would do. I try and get him out sometimes which he loves but am finding it more and more difficult to take him in and out if the car and also if he falls there is always someone at the home to get him up. The trouble with Carers is they come at no set times and you end up just hanging about. I often go at lunchtime and feed him which the home do not like as they say I am taking away his independence but he cannot see his food, cannot use the utensils and most food ends up either down him or on the floor. I consider it takes away his dignity and as I am paying his fees it usup to me. Pauline
I feed Geoff for exactly the same reasons. It is so undignified when Geoff is left to try to feed himself and it ends up all over him.
I see the manager today to discuss options but I am almost at decision point, but the hardest thing that I will ever have to do, so far in my life, is tell Geoff that he has to stay.
I am going to make inquiries with DWP as Geoff has a mobility car and see what the options are in keeping this so that I can take him out reguarly.
I agree in feeding him. It is also a shared intimacy and loving care. Eating is one of the few remaining pleasures, not a test. When he could no longer enjoy eating Chris gave up.
Pam I gave been to take John out today. It gets harder every time to manage him. We drove to the garden centre and I gave him lunch and we had a look round and then did a couple if things before I took him home for a while. My neighbour helped me get him in the house and he was very happy as he had seen the garden. The hardest thing you will find is taking him back to the home and leaving him but he is well cared for(not like I would) and I can sleep without worrying. X
We must unite in that we should not feel guilty, seems impossible doesn't it? But none of this is our fault and nor the fault of John or Geoff. Take Care xx
Everyone says we should not feel guilty but I find it very difficult not to. Have just been to visit and feed him and he managed to say when am I getting out of here. I always wonder why other people are able to keep their partners at home and I have not been able to. I suppose it also depends on family support of which I have none. Good luck with what you decide xx
I too have been and fed Geoff his tea, we walked our dog and chatted about living permanently in the nursing home.
We rang his son and that was nice.
Geoff would still be at home with me had it not been for the poor care that has come through our door.
The social worker came today and this monster carer is now part of a joint investigation both Police and Social Services.
Good!
I told Geoff and he said Good also.
I simply can no longer have strangers in our home, but I am fortunate because as previously said I can visit him daily and be there in minutes if needed.
We are both doing the best we can for the men that we love.
Pauline, remember that you never get the whole story about anyone's situation here. Not that people try to hide anything - just that no-one is writing novels about all the details. I read about the equipment that is supplied without cost to some - not others. I read about the multiple shifts of carers that some get - but not others. I read about how some people get carers who are competent and trustworthy - and sadly, not everyone's experience. Some patients are heavy, some spouses are physically able to move them, transfer etc, some aren't.... And as you mentioned, all the ways that others in the community or family may or may not support you. There are so many variables!
I'm not at the point yet where hubby is too difficult: he is still able to get up and down off a toilet or couch. He can use a walker. He has lost a lot of cognitive strength but is not "demented". I've met with our community health people and have an idea of how much our health authority will support us to keep our patients at home. Sounds good, but so much depends on the quality of the contracted home support (carers) agency.....
I tell him "I'm working to keep you at home as long as possible - but we need things to line up to make that happen. I'll do everything I can, but ultimately it's in God's hands for how things go". I never promise that he won't ever go to residential care - I know I can't promise it. Only hope.
Why not keep him there and set a time-frame to then reevaluate? Say 2-3 months? Then, if he agrees (assuming you solicit his input), then you together decide after some time has passed. It seems to me if he’s already there, it’s worth a try. Maybe you two will end up in rhythm that feels better if not perfect. And, if not, then you’ve gotten a good long reprieve to restore yourself long enough to make a thoughtful weighing of your options. Nothing has to be permanent, right (unless I misunderstand the NHS). Best of luck, go easy on yourself during the difficult time. Geoff is lucky to have such a kind partner!
DOttieLOttie, My heart goes out to you. As I read your post, it sounds like you know what is the best choice, but are wrestling with the inevitable guilt that comes with it. I can't say that it will ever go away completely, but it will get better as you see him get more dependent on them and less dependent on you. I envy you being so close that you can visit any time.
I live in a rural area and have to travel an hour to see my husband. Full time in-home care was impossible at our home. The most help I ever found was about 38 hrs a week using 2 part-timers! The agencies all said it was too far for them to travel. There is a shortage of care agencies in our area. That, more or less, took the decision out of my hands, but not the guilt. I had to, finally, listen to our doctors when I broke my back. That was a blessing in disguise. I still get twinges, but it's better now as I see how well they care for and about him in the care home. They don't do every little thing just like I would, but I feel they do the best they can and, I was certainly never perfect.
I never really had the discussion with my husband about whether he would come home or not (I don't envy you that). His stay started out as respite care too. We didn't have a definite end date when he went in and just drifted into permanent care. He just seemed to accept it as it was. I see him smiling and laughing more in the home than I had for awhile at home. I'm sure I was pretty grumpy the last few months at home.
I help my guilt by taking him foods he especially likes and watching him enjoy them. In the beginning, we took him out for meals at times and holidays until he got to the point where he would rather stay there. We all go to the home now to celebrate and he's happy with that. I put up a story board with pictures of our life at home. This gives the staff and hospice nurses things to talk about with him so they feel like they know him too. Best of all, I got my life back and you will too because you deserve it!
Interestingly, when I visited him yesterday he too did not want to go for a walk in his chair, preferring to stay in the lounge.
I went in this morning with clean clothes and he was playing dominoes, then he had Hydro this afternoon.
I spoke at length the manager, the costs are scary, more than I ever could of earned!! However she showed me what would be his room and it is spacious with 2 large windows.
I see the social worker tomorrow and then have to discuss money, but my decision is almost made and I will also heed the advise of NHGrace
If the nurse is very close to home, perhaps a compromise may be reached:
The patient have diner, sleeps and has breakfast at the nurse. In the morning he is picked up and taken for a walk,shoping, home TV, eating at home, take a "siesta" at home and return to the nurse at dinner time.
In this way, the caregiver rests at evening-night and the patient does not disconnect from his home, which is the place where he recognizes and feels he belongs.
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XXX
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