I don't know what to do

Hi everyone, my mum has PSP and has just moved in with my sister who is not coping with the situaton. Mum is very negative, constantly criticising and whingeing, horrible PSP symptoms. Mum is still eating and basically looking after herself but can't live alone because she falls often. I live overseas and can't be there to help. My sister has just lashed out at me because she is having to deal with it all on her own. We know there are respite services available but the issue is I'm on the other side of the world and this is unfair. I need to decide if I should relocate to be near my mum and share the burden.This would be an enormous overhaul for me and my partner. My sister has only asked for me to visit for a week but I know this is not really much help and what about when mum gets worse? Do I drag my partner acrossthe world now and start a new life? If we did move, we would both have to work full time so how could we help? Weekends? The Logistics are difficult How can I help my sister when she hates me, we can't even speak to each other at the moment. I feel guilty and helpless and she feels angry and hard done by.

Sorry to dump all that but I really don't know what to do.

I want to find a meaningful way to help Mum and my sister and without feeling like a completely selfish heartless horrible person. Can anyone help?

23 Replies

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  • well mate what a mix up I think if I were in your shoes I would go over there for a week or two and try and get your mum sorted out into a nursing home or somewhere after all she is your mum as well and you only get one mum mate \\

    that way you could treat it as a holiday I know you will be saying some holiday!! but if you got your mum sorted out then you would not have to worry and im sure your sister would feel a lot happier because she has your support and would not feel like she has full responsibility I cant see any reason to change all your life now your mum would be used to you living away\\\ but also do not forget your mum will be frightened and not quite sure of her future so she will not be in a good position

    in all of this having a sickness of any kind can be disheartening for an older person let alone psp mate I hope you can resolve this problem for all your sakes

    take care peter jones queensland Australia psp sufferer

  • Thanks Peter, you are right, it is frightening for Mum. Everything seems to be happening so quickly but its slow enough that she realises what is going on and she can see herself deteriorating. Its a very frightening experience. I wish you the best.

  • Hi Teej,

    Yes, PSP brings out the best and the worst in all of us. You need not feel guilty. Is there anyway that you can help to find some kind of care for your mum? If you can get someone to come into the home and help, or respite for a week or so to give your sister a break. If it is too much for your sister, maybe you could help her find a care facility to move your mum into. It is really tough being a caregiver, I can totally understand your sisters frustration, but niether you nor her caused this disease, or planned for it. Your sister may be considering placing your mum in care and there is a huge burden of guilt that goes along with that (even though there shouldn't be). Surely you shouldn't have to pull up and relocate. And you are right, a week wouldn't be much help, but maybe your sister wants you to see what she is dealing with, maybe she just needs your support. Put your feelers out there and see what your sister really needs, if you can, and go from there. She could benefit from this online support too I'm sure

    joan

  • Thanks Joan, Im sure this online support would be a help to my sister. Your comments have helped me too, thank you.

  • HI IS YOUR SIISTE R A MEMBER FO THE PSP ASSOC ?

    THEY R GREAT at HELPIGN IN ANY WAY

    AND CNA HSE BLOG ON THIS SITE OT GET IDEAS AND HELP?

    LOL JILL

    ;:-)

  • As your mum does most things for herself, she will probably object to going into a care home, even though she will need constant watching and your sister will naturally feel guilty ( although she shouldn't). But you shouldn't either. As Joan said, you didn't cause this disease. Who decided to move your mum in with your sister? If it was your sister's decision she should not expect you to relocate to help her. Would she move abroad to be near you if mum was with you? If she is in England, a lot of help is available. Your sister needs to contact social services who will start the ball rolling ( I put off contacting SS as was self financing but have had a lot of help in different ways since I was persuaded to make the phone call). Ask the GP to refer mum to the neuro rehab team. Your sister may have already done this

    It will be very hard for your sister and I think I know a bit how she feels. My dad at 93 wanted to come and live with me. My husband had just been diagnosed with PSP so I had to say no but put in place carers who called 3 times a day. I still visited him daily, sorted his finances and paperwork, house repairs, washing, went round regularly in the middle of the night when he pressed his lifeline button. I did resent the fact that my brothers just used to visit when they could, spending their time laughing and chatting to dad and then leaving ( having done a few " jobs") and then dad moaning to me about how lonely he was. But my brothers didn't live nearby, they moved away years ago when mum and dad were young, so I couldn't really blame them. We could have moved if we wanted to and it was our decision to stay near to my parents.

    So don't feel guilty, do what you can to support. Don't let your sister persuade you to do anything you don't want to. You and your partner would end up resenting it and your relationship with your partner could suffer.

    Nanna B

  • Thank you Nanna B, that is such a practical way to look at the situation. I know it would suck the life out of me to have to move back even under happy circumstances and in this situation you are right there are other factors at play. it just feels so selfish to consider these other things when Mum and my sister are going through such a hard time. I feel like they are suffering and I should be suffering too. Thanks for your kind words, they are helping me to work through my thoughts.

  • Hi,

    Perhaps you can best support your mother AND sister best from where you are. Research and advise on support available to them, such as social services providing regular visits to allow your sister to get out to shop, visit friends etc. There are charities that will come in and offer both patient and carer massage. Caring well for someone with PSP is expensive. Do they need a regular financial input from you? PSP is emotional dynamite for families. Your sister and mother are on the sharp end, they will not want to be dictated to, but will want to feel loved, appreciated and supported. I cared for my mother. Two of my three brothers (and their wives) seemed to be unwilling to do anything at all to lessen my burden. One didn't even bother to visit for the last two years of her life. I am unlikely to ever speak to them again. My third brother really wasn't very capable of caring for her, but if I ever needed him to sit with her for a short while so I could run an errand, he ussually said yes, and came with good grace. We had never been close, but it brought us together. I will always stay in touch with him now. Stay in regular contact with them both. Do what you can to help, rather than what you can't. It is hard to love someone that seems to hate you, but it is both possible and necessary. Best wishes to all of you.

  • The best you could do is to get your mum and sister taken on by a hospice - they will assess the care your mom's needs and give access to their own respite and day care facilities, advise on how to access other care facilities, and very importantly sort your sister out so that she is emotionally up to the challenge of caring for a psp victim. This is the most important because a carer needs a different mindset to cope with the illness, firstly you have to learn that the treatment by the patient is not personal and part of the illness, get a feeling of your own worth in terms of what you are doing for the patient, and become strong enough to make decisions without feeling guilty. If you can spend time to do this within a 'holiday' - and it can be a bit like banging your head against a brick wall but dont give up - this is the most you can do for your mum and sister. Do not relocate as ultimately your mum will need specialist care - better to come and spend quality time with her when you can.

    best wishes, Ann

  • It must be very difficult for you do not feel guilty.I would suggest you visit and get some extra care in place to help your sister.Does your mum have a social worker if your mum is in UK you can request one get some sitters so your sister can have some time off.May be see if your mum will go in restbite for a week or two.This may be difficult as she may still have mental capacity and can not be forced.She may also go into day care once a week depending on were she lives some care homes do this you can drop them of and pick them up at the end of day.Unfortunately and I'm sorry to say it things will get worse and we review my mother in laws care needs monthly she is now in a care home permanently and we visit every day but it was a battle.Good luck and keep in touch.

  • Thank you Wendy, I am going to try and help as much as I can from here with identifying support available and plan a visit when I can afford to go. Mum will be very willing to go for some respite, Im sure she would treat it like a break and enjoy the change! Your mother in law is fortunate to have daily visits from you, good luck to you all.

  • Hi teej, I can't add much to the comments already made and not knowing how your relationship with your sister was prior to this added difficulty, I might be adding 'fuel to the flames' rather than 'pouring oil on troubled waters'. My caution stems from having three daughters, so if I don't help write me off as an idiot; I'm used to it!!! I simply wish to raise the possibility that your sister's attitude may be affected by being very tired and feels isolated and frightened. If it can be afforded, a well planned brief visit to resolve some of the most urgent problems might help to restore the balance. It is easy to slip into a negative frame of mind when you are tired and presented with seemingly insurmountable problems, particularly when the person you are trying to help is less than appreciative (to put it mildly). There is help available; this forum, support groups, hospices, social services etc. it seems your sister may need help to access them. Best wishes, Jerry.

  • Jerry, you have very cleverly identified some of the real issues. I have never had a strong relationship with my sister and she is most definitely feeling exhausted, isolated and frightened. Right now we need to be supporting each other to help Mum and help each other deal with our Mum fading away before our eyes. instead we seem to be making it harder for each other. Crazy. Thanks for pouring oil!

  • I absolutely agree with what everyone else has said above. I was in the same situation as your sister as my brother lives in Texas and I nursed both my parents without him physically here. I found the hardest part wasn't so much the physical side of it, it was the responsibility all being on me. So for any larger decisions that had to be made we would video call and we would talk it through for hours and agree together. This made it much easier for me to accept Dads deterioration and less guilty about perhaps stopping him doing something that was a danger. On really really bad days when everything had gone wrong that possibly could, I would send him the pages from my diary so he could sympathise and comfort me! I think your sister desperately needs you to visit, so you can see what it is like for yourself so you can truly understand and empathise. Perhaps she already is thinking of carers or care home and needs you to understand where she is coming from and agree with her, relieving the guilt she feels over not being able to cope. Nobody would blame anybody for not being able to cope as a carer. I know your sister is coming over as angry with you but she is probably just taking the frustration out on someone who she knows will forgive her and stand by her. Try to be there every day somehow, email, facebook message, call, whatever you can. Just let her know she is supported and you will help as much as you can from afar. I know my brother felt horribly guilty at not being able to do more so I see your side too. Definitely visit your sister if you can, even for a week or two, and talk face to face about all that is concerning her and I am sure you will work something out that doesn't involve you moving back. Taking your Mum away from the UK for me wouldn't be an option. We lived in Spain, and believe me, there was no help here at all. I also agree to try and get your sister on this forum, where she can be met with love and understanding with everyone knowing exactly what she is going through, you cannot believe how much that helps until you are there. Try to ignore her anger at you and just support her until you can get there and give her a hug, tell her every day she is doing an amazing job and that you are so proud of how she is managing. You are not being selfish by not wanting to totally change your life so radically, you sister will see that once she knows you want to help as much as you can from where you are. Visit armed with all the organisations that might help and once you discuss it, you could take charge of the organising of that. Perhaps she feels so exhausted that beginning the fight for assistance is too much for her. There are lots of ways you can love and support your family without being there. Good luck, sending all three of you huge hugs and please keep us posted on what you decide. We are all here for you, your Mum and your sister xxxxx

  • Sharon, your words have been such a huge comfort, you big hearted woman, thank you so much. I hope other siblings and children who are not direct carers read your words and feel the love! Just because we are not the "carer" doesnt mean we dont care. I have been expending so much energy and worry for my sister, I didnt even realise that I needed a little compassion, understanding and support too! My mum is on the other side of the world, dying and I feel awful. Thank you for caring about me! Mum is lucky to live in Australia where there is support available for both her and my sister and I wish I could be more positive and optimistic about the future but honestly I expect everything will get worse. Mums health will deteriorate. No matter how much support my sister can get, she will be "giving up" more than me and I fear that over time her resentment will continue to grow. Especially if Mums needs increase as they are likely to. Because I am traveling, she views my life as a "constant holiday" and feels hard done by. This feeling is bound to be amplified as Mum gets worse. I think im struggling with the feeling that anything I do will feel insufficient. Even flying home and spending every second with Mum will not be enough, because even that will not improve her condition. it is hard to accept that even our best efforts and greatest sacrifices wont make a difference. I cant tell you how grateful i am for your lovely words of support and advice, thanks again for such a caring reply. All the best to you xx

  • THIS HAS BEEN ONE OF THE BEST BLOGS ABOUT THE PSP PROBLEM - I THINK EVERYONE HAS HAD A REALLY USEFUL INPUT AND SOME VERY GOOD IDEAS TOO - THANKS TO EVERYONE THAT CONTRIBUTED

  • With the diagnosis of PSP, Hospice is not confined to the 6 month longevity guideline; they have been with my husband almost a year; however, it is intermittent care. Also they have a respite program which will place your Mom in a nursing home with Hospice visitation for 5 days so your sister can have a rest. In the home they provide RN as needed with regular, intermittent visits, PT, MD, meds, equipment, etc. This is a wonderful resource as long as the new, challenged Medicare doesn't cut down on services. God Bless and hang in there.

  • I can't believe the generosity of everyone who has replied to my post, really heartfelt comments and with what you are going through yourselves, to take the time to write such great supportive words for me, a complete stranger is mind blowing. Thank you everyone so much. Your suggestions and ideas are really helpful and I honestly feel supported and not so lost and confused about what to do. This forum is amazing I hope you all find strength and comfort here as I have. I am going to act on some of the suggestions posted with a new feeling of purpose and try to do what I can from here until I can sort out a visit. Please continue to use this post, more replies equals more support and I agree with sasha, the comments are great for lots of us.

  • Each person has to deal with the PSP situation individually. Just as PSP isn't a one-size-fits-all when it comes to symptoms each caregiver reacts differently. Not all can adjust their lives and pick up and move to be near a parent with PSP. As you say, you would need to both work even if you lived next door to your mother. I think your sister needs to exhaust all possibilities to assist with your mother. Has she engaged Hospice? Hospice is NOT just an end-of-life organization and can help throughout the entire process. It only requires that Hospice know that this is a non-treatable, non-curable disease that will end in death. A neurologist can approve you for Hospice support. They will help with respite care, nursing care, etc. etc. Perhaps there are other local sources that can also help. We have a local group called Share The Care that can help in these situations. Your sister must explore all help sources to relieve the pressure on her. If you can support your sister financially do it right away. If you can arrange to pay for a resource to giver her a break from time to time, do it. Financial costs during this disease can mount and your support will be required. I think there are ways you can help without moving closer. Visit often even if it is costly. Visiting for a week or two will make a huge difference in how your sister views your involvement in your mothers care. Personally I don't think discussing the situation long distance is an answer. Things get misunderstood over the phone or email. Person to person talks with your sister are what is needed. I wish you luck in healing this situation with your mother and sister. Is your sister on this site? If not, why not! Is she exploring ALL available resources for information? I have built a list of help sources if you want them. Email jim.pierce@gmail.com

    Jimbo

  • Jimbo, thanks for your good practical response, a list of help sources would be great but I think maybe you live in the UK? Mum and my sister are in Australia. I have managed to find a few good leads for support for my sister. Im beginning to think maybe the issue is not "how can I help my sister?" but "how can I assuage my feelings of guilt if I dont move there to help?" Your comments have been a help for me, thank you for not saying "are you crazy, get your ass home you heartless daughter!"

  • teej, you are a stitch, very funny (last comment). I'm in the USA so probably some things wouldn't apply in Aussy land. Hang in there, you'll make the right decision.

    Jimbo

  • Hi teej -

    For what it's worth (I'm in the UK) when the time came for Tony to go into permanent care, we looked around at what was available and chose the home where he had been going for respite once a week. Turned out well - he knew them and they already knew how to cope with his problems - and it was near enough to visit.

    Also, your sister may benefit from a night sitter to give her a good night's sleep. At the time you don't realise how mind-numbing it is with the day-to-day care plus tiredness. It took me a year to "come to" after Tony passed on.

    That will be your gift for your sister - able to think with a clear head - and if you can manage to visit for a week or so it should be easier to sort out the best options. Although your mother is basically looking after herself, you and your sister need to be one step ahead. Best of luck, and we're all here for you.

    Mo

  • Bonjour Teej, first off look how right you were to post your feelings on our forum....as someone already said....tell sister to immediately get onto this forum before she has a nervous breakdown.

    And you stop feeling guilty, it isn't your fault they moved to down under! Nor is it that your poor Mum has contracted PSP.

    I know you'll take on board a lot of the very good advice that you've been reading from people in the know. For the record Teej, there is more good advice in this forum than anyone in the medical profession could ever provide.

    That's because as prime carers, we've all lived with or are continuing to struggle through with loved ones smitten with this horrendous disease. More, you get words of encouragement from PSP sufferers themselves, like our friendly regular cobber Peter Jones-Mate, closer to your sister than you are!

    As Jimbo says, by all means ,when you can afford it, fly down to talk to your Mum and sister, face to face. It will clear the air. Or try writing a real letter outlining all your feelings.

    And I'd think twice--even three times about uprooting from UK and moving to Aussiland.

    Teej, PSP is a terminal disease...except we don't know how far it is to the terminus.

    Keep calm and carry on.

    With you in mind, Teej.

    Best,brian

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