It's difficult to cope with PSP

My dear mother, who will be 89 in two weeks, was diagnosed with PSP on 30 April last year. Over the previous 3 years, she had increasingly suffered many falls, the last one on Aug 31 2011 resulted in her breaking her neck. Miraculously, she has recovered from the neck injury having undergone surgery to have a screw inserted. Immediately after surgery, she required a tracheostomy and spent a total of four months in hospital. During this time, through lack of activity, PSP took a further hold. There was little in the way of activity (physiotherapy etc) and she lost the ability to walk, could barely speak and, since the neck surgery, is unable to swallow and has been fitted with a RIG. She was discharged early January but, sadly, was not able to return home (she lived with me) and had to move to a nursing home. Although her hearing and sight have also deteriorated, her mental alertness continues to amaze me. My mother has always enjoyed the company of others, been actively involved in the community and sensitive to the needs of others. She now spends each day sitting in an armchair, in a lounge where almost no-one attempts to converse with her, unable to read even large print library books or knit. There is absolutely nothing for her to do and it is heart breaking to see her in this state. The nursing home is four miles away and I visit her every day, missing a day only occasionally. When I think about her, and about how different she used to be, I cry and cry. When I see her, I ask how she feels and she always replies that she is ‘alright’. Some days, I think she speaks quite well – at least, I can understand her – but on other days, she shows little interest and barely speaks at all except to reply that she is ‘alright’. She never complains about anything and the staff often tell me that she has a lovely smile. Indeed, she has always been known for her lovely smile and friendly nature. How cruel that she, and other PSP victims, have to end life like this.

[ashav]

I can totally understand how heartbreaking it must be to see her this way. The positive bit in this is atleast she lived an good healthy life uptill 80 + which very few can achieve. It used to crush me to see my dad who was a very very independent, strong, and fit armed forces person, within 4 years deteriorate to having someone to help him walk, having trouble eating because of swallowing issues and also not being able to lower his eyes to see his plate, unable to read , converse and other problems. He passed away 2 years ago at the age of 71. the best thing we can do is spend as much time with them as we can and make them feel happy. Stay strong. Your mother needs your strength .

[Hidden in reply to ashav]

Thank you so much for your response and supportive words. It helps to know that there are others out there who have similar experiences.

[barbren]

I too can relate to your situation as my mother was removed from my care by social services, because they thought I was not coping with caring for her. Luckily my sister and I were able to choose her nursing home, where she has been resident for nearly 3 months now.

I feel fairly sure that her care is good, though the recent Panorama programme was uncomfortable watching!

I too have been heartbroken to see her change from a very private and independant person to someone who is dependant for every aspect of her life, with multiple strangers giving her her most private care, including men which seems to be inevitable.

I have been doubly distressed that she is among strangers where she has no ability to comunicate her wishes, needs and habits, on top of that I have the humiliation of knowing that I failed in my mothers wishes that she stay with me till the end of her life. Tears and tears later, and interminable sleepless nights later, I have had to content myself that she is settling in , the staff are getting to know her, that they appear to be kind and caring, and I visit her every day except Sundays which is my partners day.

During my time with her I do her nails, massage her arms and legs with cream as her skin is so dry, wash her face and apply cream, care for her eyes which get very sticky, brush her hair, I play music that she likes and read to her sometimes, and just chat about events in my life. I have started doing some embroidery while I am with her, so that I can be with her without verbally communicating, and I make a point of showing my care and concern to the staff.

So that the staff can know a little about Mum I made a scrapbook with her family tree, lots of photos of her journey through her life, her family and pets.

I have also laminated a brief description of her life, her likes and dislikes, her personal habits and attitudes. The staff have commented on this and they seem to appreciate it. And I feel that I am contributing some very special extras to making Mum feel loved and cared for.

I feel for your sadness, and I think that your mother understands, and she appreciates your daily visits so take heart, you are making a big difference to her life. Love and best wishes

[Hidden]

Thank you so much for sharing details of your experience with PSP and your mother's transfer to a nursing home. It so much matches what has happened to us - in particular what you say about her suddenly being amongst strangers, including young men for personal care. I think the nursing care she receives is generally good but I remain unsure about the general care. Some of the staff are really kind whilst others are not so. One underlying problem is that they know nothing about PSP (in spite of my passing on the booklet I got from the PSP Assocation). Like you, I provided a personal profile with photographs. I also provided a small notebook and attached a label to the front cover explaining that my mother has PSP and that she may not be able to respond quickly to questions although she continues to be mentally alert. This notebook is with her each day and sometimes the staff have written comments or queries and I leave a response if appropriate. I too give my mother a manicure, do her hair and cleanse and cream her face and hands.

This weekend when visiting, I found a set of dominoes on a nearby table and suggested to my mother that we play with them. We (slowly) got through four games and I think she enjoyed the activity in spite of her having difficulty lifting each piece and in seeing how many dots on each one.

I hope you continue to cope and I send love and best wishes.

[barbren]

Sorry took so long to reply, am just findng my way around this site. Yes I also find that the staff do not understand PSP despite the large manual in Mum's room, likewise in the hospital the staff attitude was that she must be made to improve her condition ( like in stroke patients). I found it hard to tell them that this was a progressively degenerating disease that will not get better.

My main area of concern at the moment is that I do not know how Mum is as I get little or no voluntary information about how she slept, how she is eating etc. I would like to know who looked after Mum during the night and who got her up as sometimes she is cleaner than others, whether she had a wash or bath, when she had her hair done, her feet done. Am I being overly inquisitive or am I just resenting my lack of ability to care for her?!

What I am especially interested in is Mum's sleeping position. So many people want to prop Mum up for sleeping and I feel she should be lying flattish on her side to allow any saliva to drain out of her mouth instead of being silently aspirated due to gravity. Sometimes Mum is very chesty and gurgly, and I wonder if her sleeping position is responsible. It is my feeling that with the reduction of swallow and cough reflexes particularly when sleeping that PSP sufferers should be treated as unconscious patients when sleeping.

Similarly people think of the coughing as a bad symptom, where I think of it as a life saving symptom. I don't feel able to discuss this with the professionals who congregated to take Mum from her home.

As a retired health care worker I would like to be able to see the careplan left in Mum's room so that I can read it. This is the practice we adopted when I was working, i.e. the client always had access to her notes.

I was interested to read about you playing dominos with your Mum, my Mum seems very withdrawn and does not appear to want to engage in anything, and as I can understand very little of what she says communication is very difficult. I have stopped trying and am wondering if I should be more insistent about finding something to interact with her. She seldom smiles now.

Take care, love to hear from you again.

[Hidden in reply to barbren]

For almost a year now, I have been reluctant to leave my mum whilst I had a holiday. However, I have just had a week away and when I visited her today - her 89th birthday - thankfully it appeared that she had been alright. I took the birthday cards and she showed an interest in them when I read each one to her and then she asked me to take them home again. There are days when she displays a lack of interest in everything I say and she never smiles at me. The week before I went away, she told me twice that I did not want her at home which is certainly not true. I always tell her that she can come home when she is better and point out that she is currently unable to walk without assistance which makes it impossible for one person to care for her. My mum does not understand that she has PSP and seems oblivious to the fact that she is fed through a tube in her stomach. She tells me she can walk with her walking frame (as she did before the neck injury). Sadly, this also is not correct as any transfer from the chair is done by hoist and then in a wheelchair. She does occasionally try to converse and, often, I have to ask her to try and repeat it and usually (not always) I can get the gist of what she wants to say. I never know what to expect when I see her but I regard that as typical of a PSP patient.

This afternoon, she looked well - that is, hair brushed, facial skin fresh and clean (not dry and flaky as has happened) and matching clothes. I try to do as much as I am able to do for her when I visit - cleanse her face, cut and file her nails - but, like you, I do not know what goes on in my absence with regard to personal cleanliness, night-time etc. There have been times when I have visited and she looks as if no-one has bothered to do very much for her (hair not brushed, jumper on back to front, not wearing her spectacles etc). I make a note of my concerns and then ask for a meeting with the matron of the nursing home when I raise each issue with her.

Today, one of the nurses asked if I could provide some photographs relating to her past interests which might help stimulate conversation. In the four months she has been in the nursing home, this is the first time I have been aware of anyone taking an interest in her except to change the feed or to flush water or medication through the tube. I thanked the nurse and said how grateful I was and she told me "it's my job and I want to help her".

I do think it is important for you to try to interact with your mother even at the most basic level. I took along a book with pictures and asked her to tell me what they were - for example, name of a flower or an animal. It may seem child-like but it's just a form of stimulation. One of the other replies here suggested a personal radio - a good idea worth trying I think.

Incidentally, I think coughing is important and I share your concern about aspiration etc.

Take care.

[Sarndeep]

Hi, in response

1.Asking the care home who looked after you mum during the night, wanting to see the care plan etc, is totally acceptable requests, in fact I would insist on taking an active interest in all these things. If there are certain things that you feel that the carers should be doing then tell them, who cares if you p*** them off a little, as long as your mum gets what she needs

2. In terms of the saliva, talking etc, get your doctor/neurologist to administer some botox injections, these helped my my granddad a great deal when he was alive with both excess saliva and communication.

3. If you can afford it, get a private physio with your mum maybe once a week or once every two weeks, one that specializes in strokes/parkinson patients. This will get your mum engaging with someone and more importantly moving, it helped motivate my granddad and i really do feel his mobility was helped. There were a number of things that I used to do with him, like massaged and straighten him out once a week on a massage table, however he did live at home with me and my grandma until he passed, so im not sure how feasible that will be for you but it again helped.

Keep engaging with your mother as much as you can, play games watch TV talk about things, in my experience PSP patients seem like they maybe somewhere else but they are totally aware of their surroundings and their thinking is still as sharp as ever!.

[jillannf6]

Hi

It is really difficult to cope wIthPSP I am a patient and know how awful it is.

I am 66 And was diagnosed In dec 2010 and luckily despite having loads of falls am till pretty upright and am moving to a mgroumd floor apt

(please read my blogs on this!)

Lol Jill

[AmandaF]

Jaygee,

Do you think your mother might find it comforting to listen to the radio? Talk radio is very intimate and engrossing - perhaps she might get pleasure from hearing other peoples' voices?

My mother has a small, portable radio that she listens to with earphones. It doesn't disturb anyone else. She can no longer concentrate to read much, but radio is her best friend and such a source of stimulation.

Actually, I find talk radio reduces my own anxiety and is soothing when I can't sleep. I hope this idea might help your mother.

Best wishes

Amanda.

[jillannf6]

His nan you're mum hear ok?i gave up the radio as voices were difficult for me to follow

And reading is impos/ss too

So,talking books is on my list of to dos

Lol jill