My dad went A&E yesterday for a chest infection and a cough he cannot shift. He was discharged because the doctor believed he would be ‘better’ at home. He sounds like he is choking every second struggling to breathe but tests came clear.
My mum can no longer see to my dad’s needs and we made the most difficult decision last night to put him in a home. He still tries to walk to the toilet and won’t do his business in the nappy, carers come and do nothing because he is reliant on my mum and has her at his beck and call 24/7 and she is exhausted now.
My biggest worry is the care home won’t provide the care dad needs. At the hospital yesterday I had to explain 5-6 times to different people what PSP was and it exhausted me. But deep down I know we can no longer care for him. It’s taken a toll on all of us but I feel succumbed with guilt because dads wish is to stay home but he’s affecting my mums health my never listening and his impulsive behaviour.
I feel so broken and failure - I wish I had a magic wand to make dad better. He is suffering and I feel powerless. Mum too.
Thank you to this group who understands because no one else does and I can’t talk to anyone else.
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Khalissi
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I cared for my husband who had PSP without help. I truly understand how exhausted your mother has been. Your job now will be to advocate for your father and instead of your mother being a caregiver full time, she can now be his wife. This will give her time to focus on doing the little things that will bring him joy. Sitting with him and holding his hand, reminiscing over shared memories, playing his favorite music. I understand your frustration over needing to explain to each new shift what your father's needs are with PSP. Just a suggestion, you could make a poster or a one page handout to share with new staff. When my husband was in the hospital with COVID and isolated, I took photos I knew he would love and blew them up so they could be hung on the wall. It gave the staff something to start a conversation with him. Sending you my best.
Thank you. We’ve already had comments from family saying he will be lonely… but these people aren’t here to do the care so very easy words to say but it makes the feeling of guilt more. Staying strong.
Reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
You're doing your best to look out for both your parents, so stay strong and show that you care. It sounds like the care home are going to need to learn quickly about PSP - could the PSPA help here?
My husband went into a care home in June because I just couldn’t cope anymore with his needs. It was me on my own apart from carers coming in on a morning to shower and dress him. I was getting up many times in the night with him, having to change his bed 2-3 times a night despite him wearing pads. Then I had to be up and ready to start the day with him again by 7 am. It was such a relief to me when he went in the home.
I was told to choose a home that was both residential and nursing because eventually he will need the nursing part. I went to look at a number of homes and some were awful, but the one we chose is good. The staff are very friendly and helpful and they are always addressing his needs as they change quickly.
I don’t think my husband’s two adult kids were very keen on him going in a home but they both live abroad so aren’t here to see him more than once a year.
I would say start researching homes now so that you know where you want him to go. Don’t worry about what anyone else thinks, you and your mum know what your limits are and have done your very best.
I completely understand your guilt, as I felt exactly the same when Mum went into a home earlier this year. I just keep reminding myself that she is safe now-she wasn’t at home as she was always trying to attempt things beyond her capabilities. This would inevitably end in a fall. You’re not a failure for wanting the best for both parents.
Dear Khalissi, firstly you are NOT a failure. You haven't failed at anything. You've been supporting your Mum and looking after your Dad's needs, which seem to be increasing.I think I understand your worries as my husband doesn't want to go into a care home, and I would have the same concerns over whether the care home would care for him properly. I'm trying to keep him at our home which, though difficult, allows me to oversee all the care he receives.
But, just maybe, his behaviour would change if he goes to a care facility. He's taking advantage of the love your Mum has for him. My husband's attitude changes between me and the day care staff that come.
Our doctor and neurologist have said that if the time comes for him to go to a care facility then it should be a palliative care facility. Please check that option and ask your doctor to help with referring him.
Thank you so much. This is a huge decision for us and so hard but we know it is the right one due to his needs now changing which we can’t manage. Right now he’s with us 24/7. He can’t even communicate anymore, everything is happening at such a fast pace too.
Hi, Leosta again. Forgot to mention that my husband suffers from the same coughing/choking fits. Doctor says it's not an infection but an irritation of the trachea because he's inhaling small quantities of what he eats and drinks. It's worse with liquids. Now looking to thicken his fluids. Of course, over time those particles he's inhaling into his lungs will cause an infection. xx
I am so sorry that your family is battling the challenges of psp. I am caring for my husband with psp and we both wish for him to stay at home. But I have noticed that we both can’t predict his progression. We do our best everyday but I am beginning to realize to Never say Never. Our path is too uncertain. The loving care you are providing for both parents is wonderful. One day at a time and follow a path that is right for your family. Peace and love to you and your family.
Hi Khalissi, where in the world are you? If in the UK contact the PSP Association (pspassociation.org.uk) Helpline. They can provide you with literature for the care home with advice on how to care for PSP. If in America contact CurePSP (psp.org) as they will have similar. Otherwise contact your nearest Hospice for advice or your nearest Parkinson's unit. Sadly there is a total lack of knowledge world wide on PSP yet so many suffer with it and carers carry a hefy burden as you are finding 🙏
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