Progress followed by backward steps

Hi all

Today we made progress! As in having some help from the hospice at home, mum and I went out (no where exciting I might add, a hospital appt,) my dad "actually" allowed the nurse to help him wee! Fabulous! We came home, dad was very happy and actually smiling! Great I thought, massive step, woo hoo!

Then since we've been home my mum had gone into overdrive, cooking, cleaning up, feeding, weeing, undressing and not wanting the usual help from me?!

Is it a guilt thing? 

Mum has been told "firmly" today by a surgeon (no less) she MUST take at least 3 sessions a week to look after herself and her back ie go out, do Pilates, have a coffee blah blah! I thought it went in, at the hospital......oh god i think I was wrong....I told mum she has to take note else we are even further in the s**t than we are now....

How can I make that properly sink in cos it clearly hasn't ūüėď

15 Replies

oldest ‚ÄĘ newest
  • Maybe your mum wants to prove she can do it. ¬†I remember the first time I had help from Crossroads. ¬†I almost resented the fact that other people were coming into our house and they were able to do the job which was mine. ¬†I was a bit hurt that my darling husband, who I had left work to look after him for, actually seemed to enjoy others coming in. ¬†I didn't feel guilty, I was just annoyed that I needed help and the reality of knowing the illness was progressing for me to need that help. It didn't last though. Once I started enjoying my time out, I couldn't get enough hours to myself and now have my 3 sessions a week which I use to do "nice" things with an occasional appointment if I have to. ¬†Before the next sit, try and get her to arrange to meet a friend, or if you are available, go somewhere enjoyable together. ¬†

    Hopefully, like me, she will soon look forward to the time out.  

    I'd be interested in knowing how she gets on. Please keep us posted.


  • Awe thank you NannaB

    Wise words as always x

  • NannaB is very perceptive, and I think her advice is good. ¬†I also felt a bit jealous when my guy liked the aide, but I got over it. It's hard having a stranger in your home, doing your chores. ¬†Give your mother time to get used to having help as well as your dad. I bet she'll learn to take advantage, especially if she can plan something nice for an outing. ¬†I'm very glad to hear you are getting some assistance at last. ¬†I hope YOU can get some rest, too! All the best, Easterncedar¬†

  • Thank you Easterncedar


  • What complicated people we are !! ¬†

    We want space but also want to be needed. We fear becoming redundant, need to feel special. Your mum has so many feelings about the changes from your dad being ill. I find I get really angry about quite small things sometimes.

    It takes time to adjust. I agree it matters that time off means you have a reat.

    Let us know how she adjusts.

    love, Jean x

  • I will

    Thx u jean x

  • I take it your Mum has a back problem! ¬†Get her a regular appointment at an osteopath or similar. ¬†Get her membership at the local gym for Pilates, book her in for a hairdresser, anything you can think of. ¬†Also, see if the Carer can do any household chores, while looking after your Dad.

    It's such a weird feeling, having some one come in to look after your loved one.  Jealously, feeling redundant, for me it was the feeling of total failure to be able to look after my husband!  Your local hospice may run a course for Carers, see if you can get your Mum on to their next one.  That will help her realise, she is not alone and we all feel exactly the same.  Mine provided a Carer, so I could attend!  I am a lot more accepting of the whole silly business now!!!

    All this takes time, it won't happen over night.  You may feel as if you have gone backwards, but you haven't really!

    Lots of love


  • Thx u heady!

    Yes your bang on correct about mums back!

    I will do all these things!!

    I've been on the carers course at the hospice, it's absolutely amazing! Mum is next on the list!

    Big hugs x

  • I agree with other comments - I think she wants to prove she can do it. remind her gently - keep at it. As my mum started to take some time for her, ¬†she felt guilty leaving my dad but then she realised it was vital to breath. It is hard - but you/she ¬†will get there. keep us posted


  • Wow! This really hit home for me. In the beginning of when my sister started to really decline, I was in denial about her and her illness and my role as caregiver. Now, that I feel I'm starting to get my act together, the next step of having someone come into my home and take over as caregiver for a portion of the day has been very difficult for me. In part, I feel somewhat a failure that I have to have someone come in and help, and then feel guilty for taking time off to recharge my batteries. Logically, I know it will be a better thing for everyone that I accept the help and give away some of that control. This will give my dad and my sister time away from me(Ha), and for me time away from them. A Breakthrough! Sad to say that this signifies PSP is definitely progressing and my sister is on a downward decline, but it is such a huge step mentally for all of us in our acceptance of what PSP is doing to our family and how we choose to tackle this head on.¬†

    Thank you gwend, Heady, Doglinton, Satt2015, NannaB, and Easterncedar for your wise words and helping me to understand why I'm feeling the way I do. 

    Satt2015, give your Mom time to adjust to the new reality, she'll be fine. You'll both be fine!

  • You'll be fine, too, Gracie. Your sister is lucky to have you. ¬†I'm lucky to have fabulous sisters, too. What a blessing! Love, Easterncedar¬†

  • Amen to that! ¬†I dread to think what sort of state I would be in with out mine! ¬†Well, I know and it's not pretty!

    Lots of love


  • oh yeah!

  • Gracie

    Your totally right about the feeling of failure!

    But we're not failing just progressing as this dam illness does!


  • I agree with Nanna B . . As good as the person who sat with your dad it wasn't how your mum would have done it , No one does it exactly right .¬†

    I left John this morning for two hours , it's a new company . The carer is very experienced but it took me a very long time to recognise the best  way to deal with it all . 

    The care plan says John isn't allows to be fed or hydrated by anyone other than me , .. Th sit was really for three hours but I couldn't bare to think he wouldn't have a drink . In top of that .  I prompt him with a drink regularly to make are he is hydrated ,of course also get to give it to him when he is alert enough . 

    He was layer back with his chin in his chest bent to one  side . I have learned to lay him back as soon or when I realise he is dropping forward and place a cushion around his neck to support him . Thus helps the drool as well ,

    Then I had to get his dinner ready .I had prepared it before I left . .

    It's also someone else in your home .  I often think was it worth going out in the first place . Especially after the struggle to get out in the first.  place . 

    John does have difficulty  with his swallow chewing etc . Choking .

    But if he was in a n home who would be feeding him them  

    There are only a few carers I would feel comfortable giving him a drink or feeding . Although he has puréed and thicken drinks . Sometimes he can manage something more solid . As long as soft    We do get though a great deal of creme caramels lol

You may also like...