I am totally frustrated at how much this disease can make someone suffer! My mother has had PSP for eight years and still there is no respite and now her motion is erratic and takes 3-4 days even with laxatives, her speech is unclear, she sleeps most of the day.
I live overseas and my father is her main caregiver with two helpers. He calls me at least twice a week and tells me how the condition is at home and I just go into such a stressed state as I cannot help them in any way and it gets really hard to boost his morale when I am miserable hearing about mom.
This has a domino affect on my two young kids and I lose my head at them
Just felt so frustrated and had to voice my feelings somewhere, so hence this post.
Thank you for reading.
Ritak
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ritak
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you so right, this is a completely shitty disease, for the person who has it and for all their carers.
My husband is in his 8th year, just like your mother and when I look back in my diaries, I wonder how on earth I have kept my sanity , apart from anything else. We do have the help of carers and we have a few aids to make things a little easier but it is not just the physical aspect of caring for
someone, it is the emotional and physiological aspect as well. It is a cliche, but it is a 24/7 job.
But on a positive side, I can and do get out as much as I can, I scream and shout for more help and support when I am desperate and just carry on, there's not more I can say.
kinds regards and stay on this site for support.
Dorothy t
PS. Tell your dad not to bother with laxatives, they do not always work, just give your mum plenty of soft fruits, mainly stewed prunes, stewed apples and best of all, mashed squash or pumpkin,
Thanks dear Dorothy T. I think the emotional aspect is the worst part as I have to be normal for my immediate family while each and every day I think of how my mom has just become so helpless and dependent on carers and my dad.
Thanks for the tips on the fruit and i will tell dad to try it out.
Warm regards,
Rita
Dear Ritak
I dont know where you are. But if your mum in in UK, you should try to get ancillary support from OTs, speech therapists, physios. The reason for this is they can help with the symptoms and therefore lessen the burden to some extent. For example consitpation/diarrhoea cycle is a later stage PSP symptom. But it can be lessened with careful use of MOVICOL.
It must be really difficult trying to cope andhelp at a distance. But if your dad gets more support, you indirectly get support as well, through confidence that others are trying to help.
As for me, my dear wife has had PSP symptoms for 2-3 y, aged 57, rapidly declining. Totally wheel chair bound for last 6 months, multiple infections, pneumonias, UTIs, constipation/incontinenece cycle, double vission, etc etc. I have now got to the stage where I really dont go into all the details with my two sons (aged 30, 26), it is a form of protection.
Theres a chap in Florida, jimandsharyn who regularly writes on thsi site. He shows quite a bit of wisdom having cared for his wife through all of this awful illness. One note was count your blessings. I thought, we havent got any. But then recently though we do have one, my wife has good speech which hasnt been lost yet, so well focus on using this as much as we can. Another one he wrote was on PSP road map. Well worth reading.
Dear Jmb, we live in Singapore while mom and dad are in India. There is absolutely no concept of government help so we had tried physio sessions before mom was nearly bedridden. I will check on MOVICOL and see how dad can use that for mom.
I do count my blessings as she has 24/7 carers and my father next to her. I just pray that the carers take care of her and dont let her develop any further complications.
Dear Rita, My heart really does go out to you. It should make all of us in the UK count our blessings for the NHS. Movicol can be bought via Google. chemistdirect.co.uk/movicol...
However it really does need a bit of expertise to get the doses correct. You have to basiclly increase the dose until motions occur and then decrease to get a stable dose and stable response.
There may be other complications on the way. Best wishes, we will think and pray for you and your mom and dad.
i was dxd in 2010 and am still upright most of the time unless i am flat on my back or kissing the floor again
i try to laugh but tend to cry v easily and get v emotional over nothing!!
My speech is now v quiet and garbled and a speech therapies keeps in touch with me re my swallowing
the social services were better when i first applied to them for help and have now got a carer coming in 20 hours+ a week to help me start the day and end the day
(she has been great and takes me to appointments / to my tai chi clalss which is good fo rmy balance / choir rehearsals/ local parkinsons meetings which i go to as they ar ehthe nearest in terms of this PSP / my hairdo once a week as i can no longer od my own hair
and on a friday )(htansk to the involvement tfo the community matron) a 12 week outpatient once a week at the local hospice which i finish tomorrow
But am lucky and have the slower sort of PSP and have another couple of years yet i think
i am celebrating my 69th birthday as i may not be able to speak when i am 70 - early next year i hope
there are positives with this illness which can be difficult to see when your mum is so far away from you too.
people outside are v helpful when i fall over or freeze and cannot move and help em with the wheelchair too and my partner if i come across a slop e which cannot be pushe dup by 1 person and some friends too are v understanding of my problems
(like incontinence and bowel problems)] and visiting the toilet)
some people are not v good at dealing with this PSP and i tend to find it difficult to speak on the phone any more so do not have conversations with people like i used to
Dear Jill, I salute your positive attitude and am amazed at how you are able to carry on with normal life with the help of your carers and support groups.
I just wish my dad who is the primary carer for mom had a quarter of your spirit and loved her rather than bemoaning his fate and taking each day like a death sentence.
I'm sure the last thing any parent wants is to cause unhappiness to their children and grandchildren, and I'm sure that is not your father's intent when keeping you updated on things at home. If he is in the UK there is a lot of practical help available, although where in the UK can influence how easy or difficult it is to access. Of course you are unhappy at your mother and father's situation and not being in a position to offer practical help. You may even feel small pangs of guilt along with the frustration, but for what it's worth my opinion is, don't. Part of the pleasure of being a parent is being able to watch your children successfully carve their own niche in life.
Even if you were at home there is not a great deal you can do in addition to what is already being done, PSP grinds on relentlessly however much their nearest and dearest care or try to help.
Just being there at the end of a phone is a great comfort to your Dad, if it wasn't he would not ring so frequently. Whether you realise it or not you are giving as much help as your situation allows, you can't do more. For the most part parents are fairly robust characters, bringing up you children sees to that!
Take good care of yourself, don't let the tentacles of PSP reach out to your children any more than you can possibly help.
Best wishes, Jerry
PS. I'm still trying to work out whether dorothy-thompson's first sentence was a 'Freudian slip' or an intended 'pun'.
Lol, i think Dorothy T's sentence was with no pun intended. Thanks for your kind words, i just wish my dad would think that way as he thinks he has been handed this card in life and we are scot free He goes out to the local club, plays tennis, eats decently, has some friends but when we get on the phone he will complain how life has cheated him. Unfortunately i didn't have a selfless dad who wanted to see his kids carve a niche.
In all of the above, more than guilt my heart breaks to see my mom in this condition and with no love from her partner. He loses his temper at her even when i call up. You see, my mom was my best friend and our only sane parent and i have seen her disappear in front of me helplessly.
I do some amount of yoga, meditation so that i am able to be normal with my kids and husband.
Oh, no wonder this is so especially difficult for you. I'm so sorry. What a sad situation. Maybe it is time to get local resources involved, if you can. Would your mother be better in care, or with visiting nurses?
We do have a 24/7 and a daily carer in addition to what my father supervises. There are no homes in India which take on patients with no visibility of the last stages. If a patient has terminal diseases like cancer, homes can take them in but with PSP, well that's another ball game as we all know.
The game plays on and as we are puppets in the hands of the maker, I wonder what else he has in store for all us lowly mortals.
That is such a sad situation; your mother is obviously a wonderful person to have raised such a loving daughter. I am sure she has built up tremendous inner resources based on memories of happy times that will sustain her now. She, better than anyone, knows your father’s strengths, weaknesses and motivations and will understand, although not necessarily like, how he reacts under pressure. As my family would bare witness, I’m no paragon of virtue but it’s difficult for me to understand a mindset that considers you have been dealt a bad hand when your partner was dealt PSP.
What I do know is that my most miserable times are when I reflect on those moments I could have behaved more considerately towards my wife and knowing there is nothing I can do now to put it right.
Your love for your mother will ensure you are doing your very best for her, leaving no room for regrets. I hope your father's attitude mellows so that he can feel the same. Take good care. J
Ritak take it a bit easier on yourself dear,we,re in exactly the same position except we have 2 sons...they wanted me to move to their homes,call most every night...for 10 years now but I remember my old MOM when she went to a home and us asking her to come to our home answering ,.I have lived my life,you have 2 children to look after and your wife,go do your life,you are not responsible for mine,.I hope that is what I am passing on.The other thing you must remember is that your parents have fond memories of one another as husband and wife that gets them through a lot that you are not aware of so your burden becomes a lot heavier as a child who,s memories are of love and care I ,hope this may help a bit,love Rollie
Ritak, I totally second quickgel's and Rollie's replies. From where you are, being the one on the phone for your father is what you can do. Be glad he feels he can talk to you. I hope you have a friend or counselor you can talk to in turn. Of course you are concerned about your parents, but you need to take care of your stress so you can take care of your kids. Hang in there. Easterncedar
Yes, I have told dad to call me anytime as I can feel his frustration and listen without judgments. I do try to take care of my health, do meditation and yoga to help ease this mind.
This disease is tough on the entire family, even those not living close. It's good to vent once in a while and we are here to hear it and ease your pain as much as we can. Constipation is a major thing in this disease because basically any small muscles/nerves don't work well including those who move things through the digestive tract. I used suppositories on my dear wife and those worked. I left her on the bed with a huge square diaper under her until she went. That way she was comfortable during the process. Once in a while I'd have to put on a rubber/latex glove and go in with my finger to get a blocking piece out. Oh what we do for those we love and would die for. Jimbo
Hi Rita. Sorry to hear about your distress. Do you speak with your mum as well as your dad? Even if she can no longer speak, she will enjoy hearing your voice and stories about you and your children. Ask dad to put the speaker on and the receiver near mum's ears. Hopefully this will bring some joy to mum and make you feel better.
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Can anyone offer me advice on how to do my bit when I live a long way away from my mum?
CBD - Is this the end?
Is this the end for my dad?
Mom is at her wits end.
