Downhill or not?

Hi All, I have not been very active on the posts these last 3 months.. My sister is really going downhill.. she forgets certain things and then fights about it. Her speech is terrible and eyesight even worse. She in now in a wheelchair but insists on walking. I now have two full time carers! Wants to go to the shops everyday. Opens the car door while I am driving. Sometimes she even grabs the steering wheel. She is forever counting everything which drives me up the wall... Normal conversation seems gone. She now sits and sleep or watches TV most of the time. When someone visits her she talks to them for a minute or two and goes back to what she was doing before the time. She seems so lost! She is turning 66 in October and her daughter wants to take us on a cruise for her birthday. I think it is a bad idea because it will be sooo difficult for us and I don't think it is the right type of holiday to take her to. She chokes on everything she eats and drinks.. it is so bad taking her out for lunch. She will fart and think it is funny... People stare at us throughout the meal and her uncontrollable laughing (while spitting food all over) makes people think that she is intoxicated! Not that I care about what people think... I just do not know how to handle it. I cannot,, not take her out because I do not want to hurt her feelings.

She was such a classy woman before PSP got hold of her. I cannot get over the fact that her whole personality have changed. No inhibitions what so ever...

Oh dear Lord.. help me and her through this...

12 Replies

  • I wouldn't want to take S on a cruise now. Just being on a ship with its ups and downs, would be enough to put me off.

    I see you are in South Africa, so are you talking about the small 3/4 day cruises? This might not be too bad, if you don't get off. Have room service for eating, take your Carers with you, make sure you get a disabled bathroom that transferring from a wheelchair to shower is possible. Certainly not a holiday for the faint hearted. I am guessing that you live with your sister. Perhaps you could suggest that her daughter takes her, giving you a rest!!!

    Lots of love


  • Hard to give your loved one to soemone with high expectations...maybe should break in daughter with , Here, "you take her for the day" "and if after that interlude you feel confident that the cruise is the right thing....then have at it....I'm going to the spa!!!" hahaha oh sorry I am getting a bit apathetic too!


  • I don't know how she would be on a cruise. We went on one soon after diagnosis when my husband was still walking with just me to help support him. I'm pleased we went as it was something we had planned for our retirement but the only relaxation I got was after I had put him to bed and was able to meet new found friends every evening. During the day I was anxious most of the time. The coughing did disturb other guests at mealtimes although we ate with two widows who had both nursed their husbands and could empathise with me. He got up to go to the gents at one meal and exposed himself walking out of the dining room.

    Now I don't do anything I don't feel comfortable with. If people try to persuade me to go out with them with C, if I haven't looked the place up first to see if it totally suitable, I don't go.

    I think like Heady. If her daughter wants to take her, let her with the carers and you enjoy your break at home. If you went would it be you doing all the worrying and problem solving while everyone else had fun? From what you say your sister is like now, I can't imagine it being a nice relaxing time for you. You sound as if you need a break. Have one, but not with your sister.

    Best wishes.


  • So true NannaB. I can't imagine B on a boat....the slightest of rocking (we've never been on a cruise ship) would have sent him overboard or into somebody else....and his "quirks" could be rather offensive to others.....

    I suppose I am glad you had the experience, not so much for you, but for others such as gvis8 who need definitive answers..That's what we're here for eh?


  • I remember B making gaseous noises in public...laughing at things not funny and rather insistent that he could do things independently... However he never grabbed the wheel or try to open door while driving....This is VERY dangerous for not only sister and you...but if you are trying to rescue her you may lose control of car and hurt someone else! In order to stop that behavior I have some ideas :

    1 Make sure she is buckled in the middle of the back seat

    2 Make sure one of her carers is with her while driving.

    3 Make sure doors are locked and she is buckled

    4 Maybe it is time to stop taking her to lunch etc...maybe just tea or coffee instead

    5 Do a swallow study...she may not be able to swallow food anymore that is not mashed...or PEG tube...have ya'll talked about this option?

    Apathy is rampant in PSPers ...they have no control over their feelings or lack thereof...

    Just remember it is not her but PSP...somewhere in her is that wonderful sister...and the best way to see that classy lady is to keep her from experiences that will lead to anger and restaurants Plays or other public events where she must sit for a long while....find the things that she seems to respond to ...I think there are alot of people here who can help you with what they did for their loved one....I know too that B's personality tho never sour, did change back to a more reasonable it may be a thing she is going through that will change back to a more docile person.....I do not know...I do wish you much luck and again find things that make you both happy...even if it is only for a moment and rather infrequent...



  • Thanks to you all. All our relatives, including the daughter, thinks it is easy looking after G. I have two carers.. yes it does make it easier. I am still working full time and spend evenings and weekends caring for her which makes me start the new week tired..But the responsibility lies with me. They come for quick visits once a month or less.... Anyway I want her to live with me. I made a promise that I will look after her and that i'll matter what. I am just a bit tired and depressed. Thank you for the info on taking her out.

  • Unless they've done it no-one can appreciate how draining it is. You are doing well to have a full-time job as well. It is physically exhausting and emotionally devastating.

    Could you suggest they actually have care of your sister for a day and overnight for you.

    I found it helpful to offload to a counsellor, arranged with the local carers centre.

    love, Jean x

  • I've a suggestion for outings. Your sister's behaviour seems embarrassing and, while we try to tell ourselves that people should be more sympathetic and not critical, it still affects our experience. Outdoor activities are less scrutinised by others and more easy to remove yourselves from awkward situations. How about picnicking in a country park? Not a holiday suggestion! Just a potentially relaxing weekend activity.

    Full of admiration for you and the many others on this forum who are living through such difficulties.


  • That is a great idea! It is the start of our summer now so it can work very well. South Africa is not very equipped for disabled people... but I can make a plan to get her to picnick spots... thank you.

  • Lots of the game parks have cottages for disabled people and game viewing is great, as I am sure you know. Our last holiday, 18 months ago, I took S around Addo, it was great, he could cough all he wanted, had to sit still, no falling and conversation wasn't needed. What more could you ask for a PSP person?

    Lots of love


  • My wife is 66 in Oct but a bit further along PSP road than your sister. Luckily never irrational while driving but child lock on car door stopped her opening the door (usually trying to help get out).

    Depends on cruise line but many of larger ships have disabled state rooms and will bring food to room and arrange special diet puréed food. If she is in wheelchair most ships good access to decks otherwise invest in a balcony, to avoid embarrassing issues.

    Spent 20 yr at sea and M 6 months at sea in forces so never interested in cruises but lots of coach tours last one 2 yr ago great but since then been day trips only.

    If she can still enjoy the experience go for it but ensure you share the care with her daughter, so you can get some respite.

    Best of luck Tim

  • Thanks Tim. Thinking of you.

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