We placed our mother in a nursing home when we could no longer care for her. It has been our first experience with a care facility. The staff on the floor are wonderful caring people.
That’s where it stops........ if we had our time again this would not be our choice. Not enough information is known about this terrible disease. Usually when it is finally diagnosed the person is well into the disease.
It is so hard when the doctors, care managers and many other people involved in mums care do not understand what is happening and what mum needs. The hardest thing is no one wants to listen to her family who have read everything possible about this disease and who know their mother more than anyone else. And then to be accused of tormenting the staff when we question them.
I will spend the rest of my life trying to help others going thru this demoralizing sickness. I will just need to heal for a little while.
I wish we had found this forum earlier. To know there is others experiencing similar problems helps us to know we haven’t let our mum down.
Please give and receive lots of cuddles and hold your love ones hand tightly.
Take care
Written by
Goroos
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My husband ended his journey nearly four years ago now, but I can still feel the bitterness and anger from the way he was treated (or should I say not treated) by the professionals. They haven't got a clue about PSP. Thankfully, his time in a nursing home for respite, was spent in a place that had dealt with PSP before, so did have a small idea what it was about, which was more than his consultant, GP etc., etc.
All you can do is keep on keeping on at the staff. The PSPA have some very useful little booklets that might help them. At least it they will reaffirm what you are saying. Although the bottom line is, nobody understands this disease unless you have spent 24/7 with it. Even now, I struggle to explain what makes PSP so different, perhaps the professionals should be made to read this site, or have it as part of their training, but then that might really upset the apple cart, they might start to care about the people they are looking after and their loved ones and that would never do!!!
I'm so sorry you are going through this experience with the care home. I agree with Heady, the PSP Assoc has a good range of pamphlets for the different medical professions which you can request or you can go to their website and download them.
Before my husband was admitted to the care home, I had a meeting with the Home Manager to discuss his needs and the care he required. I brought copies of "An Introduction to PSP"/ Pamplets for Medical Multi Disciplinary Teams and notes from SALT on his dietary requirements which we discussed and she took with her for his file. I'm so glad I had these as she had never heard of PSP.
On the day I brought my husband in to the Home the nursing staff were actually reading up on PSP on their computer as they too had never heard of it. I thought this is a great start.
So please get the leaflets, request another meeting with Home Manager and if you don't get a satisfactory outcome, make a formal complaint to the Home Owner and if that doesn't solve the issue, complain to the Regulator of Care Homes for your area.
We have all had to fight for our loved ones, we are their voice, so don't be put off. Good luck. Will be thinking of you and your mum.
This shows the value of this forum. My wife has CBD and is at present in hospital with a fractured hip having had a fall. This is her second stay in hospital in 5 weeks. I am fed up with no one knowing about CBD and it consoles me to read that I'm not the only one with this problem. Above her bed they have a card saying she has Parkinsons, I have tried to explain that although CBD has some similar symptoms to Parkinsons it is very different. The response I get is that she is on Madopar which is for Parkinsons.
What with CBD, the fracture and the delirium and only being allowed to visit for one hour per day I'm feeling helpless.
I can understand your frustration I too was diagnosed with Parkinson plus 2 years ago and it’s confusing to figure it out I told my neurologist that I would rather have a _ not a + as I was not in school any more this made him laugh jokes aside 2 years on I now have been told it’s CBD no one seems to get that is different to Parkinson’s either way I find that trying to stay positive you didn’t say how long your wife has had cbd I myself feel I had it for at least 18 months before my g p finally listened to me about my fear that I had Parkinson’s not stress he was shocked to get the report it is hard to get it right everyone is different I do take madopar but a low dose as my body couldn’t deal with the high dose I exercise including mobility classes swimming konga yoga and aqua classes along with a routine of exercises from my physiotherapists with takes a good hour every day except the weekends I truely believe exercise is the key to slowing down this hideous and debilitating decease my arm wouldn’t swing and I couldn’t move my arm across my body to wash myself or wash my face I now can my next step is to see a speech therapist if you utube PD WORRIERS they have great exercises for Parkinson’s and cbd I don’t think I would not be where I am today if wasn’t for the team specialist to guid me on my not so sure journey I don’t know if this has helped any I am going to do my best to beat the odds I wish you and wife all the very best on your journey don’t give up keep on keeping on from someone else with CBD ❤️
Thanks Brontie. Sorry to hear you have this pernicious disease, you seem to be a fighter. My wife Val was diagnosed over 3 years ago, she probably started with it several years before. Her physical problems came after her early signs of dementia so Parkinsons was never on the cards. One of the most difficult things I have found over the years is the apathy. She deals with CBD differently to you, she is not interested in forums like this or PSPA. I think I am responsible for her lack of fight, I retired 4 years ago so have cared for her everyday needs ever since. She has deteriorated a lot in the last 6 months.
Good on Brontie keep up the exercise and keep your mind sharp with reading, crosswords etc
Thank you I do lots of brain games puzzles colouring in as well as doing vocal cord singing in the car when I am on my own I am allowed to drive in residential areas no more then 7 km no highway driving for me but that’s ok all my classes are in that range .I wish you both strength and courage for your journey god bless 🙂❤️
Most patients with PSP - CBD are treated with Parkinson's meds in the beginning. Some respond well, others don't. Do keep up with your exercise routine it will make a difference in your mobility as you've discovered. Exercise and Attitude will help you keep on, keeping on.
I am saddened to read your letter, but not surprised. I was fortunate to be able to keep my husband at home and only used respite twice. The first time 15 months before he died, when his condition was not so advanced, which was fine. The second and last time, three months before he went and I have to admit I was not satisfied and wish I hadn't booked him in. But, hindsight is a wonderful thing.
My carers at home were wonderful and were happy to read up and learn about PSP. Fortunately both GP and District Nurses had a previous experience of a patient living locally which helped enormously.
All we can do is inform and educate as much as possible so there is a wider knowledge of this devastating disease.
Sadly, Goroos, we do become the experts as carers. Some GP surgeries may never see a case of these illnesses during their working lives so to many it remains a mystery.
For what it’s worth, have you thought about producing a laminated, 1-page bullet point document, listing all the things that your mum can and can’t do, from your hands-on experience? There’s not a one size fits all for these diseases so giving the care home staff a manual or the like to read may not be entirely helpful, it needs to be something unique to your mum. My husband’s journey is over now but this is something I did and found really helpful when he was in hospital, I also took a copy along for hospital appointments for his file. Explain to the care home that you are not trying to tell them how to do their job, it’s supposed to be a constructive document to help them understand your mum’s challenges and needs and therefore hopefully will make life easier for them as well as her.
You might not be caring for her now but the anxiety and stress doesn’t go away, does it and more so now due to the Covid restrictions.
Best wishes to you and your family as you continue along this bumpy road.
I know exactly what you mean and understand completely where you are coming from. My Mum when into a care home which is very nice and the staff are very kind but it is not like having her at home. Unfortunately I live in the UK and my parents are in Australia. My Dad is 80 and unable to give mum the round the clock care she now needs. My biggest worry is the fact that she can now no longer speak which in my mind makes her even more vunerable. If the staff are patient this is OK but with work schedules and more often than not the carers having English as a second language, the whole day to day process is made that much more precarious for my Mum. All the best to you - it is such an upsetting and terrible illness.
Your experience seems to be universal, unfortunately. My Dad was in Long Term Care (nursing home) for his last 2 1/2 years of life. It was definitely not ideal. Although his direct caregivers were compassionate, the time they spent with him was dearly lacking. My Mom or I visited everyday for hours to engage with my Dad (walks, talks, games, etc) and help with his feeding. I posted a couple of papers explaining PSP (simplified) in his room and directed all those who worked with Dad to read them to help them understand....this did help somewhat. Sending strength....
We try to help the staff all the time, as we realize they are time poor. We have just employed a companion for mum to keep her company and to help feed the time consuming lunch to her.
We the family member have time limits because of Covid but can employ a companion which is helping mum.
Long hard frightening journey in a country area that has no past experience with PSP.
It is so true, it is a constant communication battle trying to explain over and over again.. one of the things that wears me out most.. saying the same things to the same people who are in the medical field again and again! And they still don’t get it.
Yes this is exactly what my family and I are experiencing. It’s like we are in a constant fight mode. I have laminated posters in mums room and even photos of Mum in her princess chair showing the correct position she should be in to help with her swallowing. We thought visual prompts would help staff.
It is frustrating to have to educate the health care folks- but I figured that was because it's not a common illness- and being linked to PD makes people assume it is similar in many ways. So with covid, and lack of personal visits with Neurologist- I have had to document the issues and make copies so all of our hospice care knows what is going on- otherwise it's exhausting to repeat over and over. People are busy, rushed, overwhelmed and stressed during this pandemic and maybe not retaining what is verbally conveyed- and staff is changing almost weekly. So we do our best to maintain sanity. In addition to my husbands horrible PSP- I refuse to let the stress and frustration take me down. Being in direct care myself, I do know that if family complains too much- it can affect the way the staff behaves. Trying to stay sane and in control as much as possible- I understand so well how you are feeling. Perhaps a fact sheet on PSP posted on a laminated sheet near the bedside could show the concerns and differences between PD and PSP so care givers would know about things such as falling risks and aspiration, speech and vision. Mostly, I'd want them to know our loved ones can still hear them, and comprehend - even if they are locked into a body that can't respond the same way.
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