Father-in-law to have an operation

Discussion in 'I care for a person with dementia' started by DMac, Jan 20, 2016.

  1. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    My FiL, 82 and with as yet undiagnosed dementia, had a Best Interests meeting today at our local hospital, to discuss the possibility of him having an operation to repair an inguinal hernia. I attended the meeting along with my OH (his eldest son).

    To my surprise, the medics recommended that the operation should go ahead. They would operate using a spinal block instead of a general anaesthetic, which should help prevent further loss of cognitive function. He would have to stay in hospital for 1-2 days.

    I was surprised because I expected them to say he was too frail for further surgery. He had a major operation for bowel cancer 2 years ago, and has had both hips replaced, one twice. He also wears an indwelling catheter as a result of loss of bladder control following his bowel surgery. He has what I suspect is aphasia as a result of an earlier hip operation (but again, this has not yet been diagnosed), so they considered that he was not able to make a decision for himself, hence why OH and I were there.

    My OH and I are happy that the medics have balanced up all the risks and benefits, and based on available information, it does seem right that he should have the operation. But I'm just wondering what if....

    What if he suffers some complications? What if he can't be discharged back home? Would Social Services carry out a fresh assessment of his social care needs? Would he be eligible for another re-ablement package, like the one he received 2 years ago?

    The picture is complicated because he lives with his wife, who cares for him but has herself been diagnosed with dementia. He has an agency carer visiting him every morning to get him out of bed, washed and dressed. His daughter visits him every evening to put him to bed. As a family we have tried to introduce additional care visits in the middle of the day, but his wife turned them away. His sons and daughter visit regularly and bring meals to them, but it's not a formalised care arrangement. Obviously, we'd have to make sure he had 24 hour supervision for the first few days after his discharge, at least. But how likely is it that his care needs will increase permanently?

    Has anyone out there had similar experiences of a PWD having a similar operation? Is there anything I should beware of?

    Thank you.
     
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Hi DMac
    I don't have experience of the op but I am sure you are right in terms of increasing the support post op for the short term
    My only thoughts are from my Ma's experience of having local anaesthesia - she was terrified (I'd been told it was going to be a general) because she didn't understand what was happening no matter how many times they told her. So I would ask that in addition to the normal theatre staff that there was someone (I would say preferably someone he knows but that's probs not poss) who has a really good understanding of dementia, distraction techniques, keeping him calm and generally being his 'angel' and that also both pre and post op they have a 1 to 1 care support worker there for him.
     
  3. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Thank you fizzie for your reply. I did ask about having some support for him, and the anaesthetist did say he would have a dedicated nurse who would be there throughout his operation, and be there for him when he's back on the ward. They do seem to be dementia aware, which is a good sign! :)
     
  4. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Glad to hear an update on your FIL, DMac. I understand that you were a bit surprised to hear they want to go ahead with the procedure. I hope it goes as quickly and smoothly as possible.

    Good for you, to be thinking and planning ahead. I am relieved to hear there will be a dedicated nurse for the procedure and post-op. I think you probably just keep talking to them and make a nuisance of yourself on the day, reminding EVERYONE about the dementia, in case they didn't get the memo!

    As much as possible, I'd have a family member present at all times during his hospital stay, but you know that part already.

    I also wonder about what plans you can put in place to support MIL, who is bound to be confused by his absence and the whole situation. I wonder if she needs 24/7 company during this entire time as well? I would hate for there to be a crisis with MIL on the home front, at the same time as FIL is having surgery.

    I also would make sure you are perfectly clear that when he goes "home," there will be no reliable care or support available, other than the professionals-that his wife has dementia and cannot provide care. This may be your chance to get additional carers into the house, for both of them.

    I wonder if it's an option for your FIL to go to some sort of step-down, rehab, or respite unit/bed/ward/facility, to recover after surgery? I don't know the mechanics of how to arrange this in the UK but it's worth asking about. God forbid, he has some sort of complication, then I imagine you would be looking at this type of situation.

    I wish I had better answers and advice for you. I hope this goes as well as possible, that the medical outcome is good, that he gets relief from his hernia repair (that has GOT to be uncomfortable, as I recall you saying it's quite large, yes? and presents hygiene issues?), and that...somehow it all works out.

    And at the risk of being rude and interfering, but with good intentions, don't stretch yourself too thin! I know that obviously this presents an urgent medical situation, but you don't have to run yourself ragged because of it. Support your husband, yes, but let him and his siblings step up. This may be a good opportunity for them to see and hear just what care is needed for their parents.

    Sending good wishes to you all.
     
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    oh that is great news xx
     
  6. Lawson58

    Lawson58 Registered User

    OH had surgery for a massive inguinal hernia last November and I was surprised that they were prepared to do it for him as apart from AD he has some complicated cardiac issues and has a defibrillator following a cardiac arrest two years ago.

    I have to say that the preparation for his surgery and anesthetic was excellent. He had to come off his warfarin a few days ahead and a nurse visited him every day to give him an injection to replace it. His AD is not too advanced yet but they were very careful to keep explanations simple and made sure that the same nurse looked after him till he returned to the ward. The surgery took about an hour and a half and he had to have a catheter fitted but it all went well. There was a huge amount of bruising and a massive amount of swelling not just around the wound but in the whole area of the genitals. They did not staple the wound but used a medical grade superglue instead and the wound was about six inches long.

    He was in hospital for three days and then had nurses visit him everyday for the first week then again when the catheter was removed.

    He has done very well physically. There was a lot of confusion in the few days following the surgery but that has settled down though there have been other things apart from the surgery that have created some other problems.

    OH had a lot of pain associated with the hernia and so that has now all gone so it was well worth doing.

    I do hope that everything goes well for you.
     
  7. Louby65

    Louby65 Registered User

    Mar 26, 2014
    620
    Scotland
    Hi DMac , I would hope that along with his spinal anaesthetic he also should receive some sedation to keep him asleep . The spinal anaesthetic will provide good pain relief for a time afterwards . I know people do worry about the side effects of having the operation but the disadvantage is risking incarceration which could be very painful and could be fatal . Having the nurse pre and post operatively is an excellent idea and family should be encouraged to be there at all times to limit the confusion . I have read many threads on this forum from people who are critical of nursing staff asking them to 'help out' . This is not the case , it is more about providing the best standard of care , which means involving families to ensure the patient / family members' health and safety is adhered to at all times . When your father in law is in hospital ask for a referral to the hospital social work department and let them know all concerns , especially your mother in laws dementia . They should increase his package of care , do not take him out of hospital until you are satisfied that this has been increased and you have been able to assess him yourself . If you have any concerns raise them with the nursing staff. Good luck and best wishes to you and your father in law . Lou
     
  8. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Thank you!

    Wow, I never cease to be amazed at the thoughtful replies provided on this forum! Aided by a good night's sleep, your replies have helped me to think about the situation with a bit more clarity. Thank you all so much!

    In no particular order:

    Lawson, I am so pleased to hear that your OH had a good result from his hernia operation. Reading your account has made me feel so much more positive about the whole situation. I can now visualise a successful outcome for my FiL, which makes it feel worthwhile pursuing!

    Louby, yes you are right that the risk of strangulation would be painful and could be fatal. It is this factor which has swayed the decision to operate more than anything else. Apparently the risk itself was not huge, ironically BECAUSE his hernia is so very large; it allows the bowel matter to flow through relatively freely!! :confused: But it is more that the consequences of strangulation would be painful and very frightening, not to mention life-threatening. It would be a distressing situation not only for him, but for my MiL as well. The other issue is that because of its large size, the hernia gets faecal matter stuck onto it, which is a devil to clean off, and yes, this does present hygiene issues.

    Louby, yes the anaesthetist did say my FiL would be sedated as well as receiving the spinal block. This is reassuring, as I can well imagine he would get very confused and distressed otherwise.

    Amy, thank you for your thoughtful reply, especially considering the turmoil you are going through yourself at the moment. I appreciate that you took the time to reply to me, and that you remember me from my previous posts! :)

    We will most certainly have have family present during his hospital stay. In fact, we will have a job keeping MiL away! In a way, it will take care of 2 issues in that one of us will need to take MiL to and from the hospital, and that someone will naturally be there to oversee FiL's care, and make sure MiL is OK at the same time. In spite of her progressing dementia, MiL sees herself as being responsible for her husband's welfare. She is quite strong-willed and will want to feel involved in all the discussions and decisions about his care. The trick is to make sure she feels included, whilst tactfully keeping her away from dangerous areas!

    I think you are right that his hospital stay could present an opportunity to increase the care package in place for both of them. It's a good idea to contact the social services team whilst there. I also agree it's a good idea to organise a respite stay for FiL in a nursing home, as it would avoid the very real risk of MiL doing something well-meaning but dangerous, such as removing his surgical dressings! I think whoever is taking MiL to the hospital and overseeing FiL's care would need to initiate these discussions.

    The question is, will that person be me? Well, I have an interview lined up in a week's time, for a full-time job in an organisation I used to work for! Assuming I get the job (no guarantees but I feel I have a good chance), it's unlikely that I will be available, so one of the other family members will indeed need to step up. In which case, I will support my OH, pass on all of your good advice, and encourage the family to make the best choices. As someone said before though, I have to be prepared to allow them to fail - so difficult, but so right.

    Thank you for reading this, and my best wishes to anyone else out there supporting a PWD facing an operation.
     
  9. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,392
    Yorkshire
    Hi DMac
    just wanted to send my best wishes and hope that all goes well for your FIL and his family

    congratulations on the interview - fingers all crossed for you (which will get a bit uncomfortable by next week so you'd better get the job to make the pain worthwhile ;))
     
  10. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Thank you Shedrech, I will do my best to get the job and to relieve you from the pain of crossed fingers! :D
     
  11. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Update

    Things have moved on apace. FiL now has an appointment for pre-op tests to be carried out, and the operation date has been set for late in Feb, about 5 weeks away.

    One BiL has volunteered to take him for his pre-ops early in Feb, and another BiL has volunteered to take him into the hospital and stay with him on the day of his operation. I will help out by getting him ready on the day. It's good that they are stepping up.

    In between those dates, he has his long-awaited appointment at the local memory clinic coming up. I will be taking him to that one, with my SiL attending for a while (she needs to arrange cover for her job). There will be an opportunity to speak to his social worker at that meeting, which is good news.

    Meanwhile, I have my job interview coming up later this week. I am terrified! I feel sure they will find some reason not to take me on, even though I was well liked when I worked there before. I just have a sneaking suspicion that they will have someone younger lined up, that they just want someone to compare with. This is completely groundless, by the way, it's just me being cynical about ageism in the job market!

    I'm also feeling really unsure what I want, job-wise. Yes, I do want this job. I want the stimulation, company of like-minded people, opportunity to learn new skills, and financial independence. No, I don't want full-time hours, nor do I want the stress of meeting deadlines and sometimes ridiculous or impossible requests from 'internal customers'. It's full-time or nothing, until I've worked there a while and can request a reduction in working hours. And I especially don't want the conflict between sudden demands from (or on behalf) of my in-laws, and meeting work requirements. They have flexible working, but it's not THAT flexible! It's one thing saying others in the family will have to pick up the slack, but it will be quite another finding one of them able and willing to step in to the breach, especially at short notice.

    Ah, heck, I just have to go for it, what will be, will be! :)
     
  12. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Hi, DMac. Don't be silly, of course I remember you, and I'm very glad to hear your update.

    I will join others here in sending good thoughts for your job interview. I hear you on feeling uncertain about whether you want it to work out or not. If you will permit the digression into personal matters, and please feel free to ignore it, I am feeling pressured at the moment to accept a job that looks perfect on paper, but scares the daylights out of me. I am terrified of responsibility and making errors, that my mother will have a crisis and I'll let them down, and insulted by the wages they are offering, but the chance to have more social interaction and spend some time not thinking about Planet Dementia and maybe start to have a real life again, are all very attractive.

    That is all by way of saying, I can hear you are conflicted, and of course if they don't offer you the job, you don't have to make a decision. Please try not to sell yourself short (easier said than done, as is so much of the advice here).

    Whatever happens, I think it's great for you to go to the interview and I hope you will let us know how you get on, please.

    I hope things continue to go okay for your father-in-law. I am sure I, and many others here, are waiting, as are you, to see how much they all manage to step up!
     
  13. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Thank you Amy, it really helps to hear your friendly voice and reassurance. It's a coincidence that you are at the point of taking a job as well. I would say to you 'go for it', on the basis that if you don't, you may regret it. I have found that I have regretted NOT doing things far more than I have regretted DOING things in the past. Funny thing is that, if I were advising myself, I would say the same thing! :D

    Anyway, employers are learning to be more sympathetic to carers these days. I had an interesting conversation with an HR manager about this very topic when I was at my last job. She said that employers are now starting to recognise that caring encompasses adult care as well as child care, and that they need to make provision for it. So, maybe, times are changing for the better. :)

    Talking to you by way of this forum has really helped. It doesn't stop the internal conflict, but it does give me the resolve to see it through and give it my best shot. And I promise I won't sell myself short! :)
     
  14. 2jays

    2jays Registered User

    Jun 4, 2010
    11,477
    West Midlands
    I totally understand the conflict

    But

    This time/job is for you, which at all costs must take precedence. So that you can be supportive to others when really need it and not as a handy help :) xxxxxxx


    Sent from my iPhone using Talking Point
     
  15. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    2jays, that's a good point. It's very easy to lose yourself in all this dementia caring, even those of us who aren't hands-on carers. I normally don't have trouble doing things for myself but that's been so hard the past few years. I think reminders to look after ourselves are definitely needed.

    DMac, you are too kind. I can't tell you how much I appreciate all the friendly voices here on TP as well, and am honoured to be counted amongst them.

    If you don't mind a further hijack and some moaning, read on. I can also move this to another thread, if you would prefer, just say so.

    I will try to listen to your advice about the job. You are absolutely correct that I have more regrets about things I haven't done in life, than those I have (with the exception of joining a sister-in-law, her husband and 4 children, teen to toddler, plus a cat, on a campervan/mobile home/motorhome trip last year--I have no regrets about missing that). It is good advice!

    I will probably agree to the job. It is probably a good idea. I am probably overthinking it. I am probably capable, even though I feel I am not.

    My issue is that I feel trapped, because it involves a close friend, and while I would unhesitatingly tell them to jump in the lake otherwise, I feel I must say yes, to help said friend. I did one of those "pro/con" or "for/against" lists, the sort where you take two pieces of paper and write down all the reasons why you should do something on one, and shouldn't on the other. I had four lines on the "take the job" list and about 10 on the "don't take the job list." This is a very good friend, the sort for whom I would go through fire. (The job makes fire look good, to me, to be honest.) Hence, my conflict.

    Normally I wouldn't discuss it at all on a public forum, although the chances of anyone from there finding a UK based dementia support forum and figuring out who I am, seem slim.

    But that's more than enough about me; although you might find this all distracting, this is your thread. Anything more you care to say about the interview or the prospective job?
     
  16. CeliaThePoet

    CeliaThePoet Registered User

    Dec 7, 2013
    614
    Buffalo, NY, USA
    May I also hijack re: new jobs? I work full time but have just had two positive phone interviews for a new job. I am very ready to make a move, though have the same worries you mention--what will happen if there's a new mom crisis, etc, and the general wary/weary feeling about not wanting more responsibilities when I already have the dementia one. (A friend said, when you're a carer, it is like always wearing a 25 pound backpack. Useful thought!) I'm quite frustrated at my present job. But, two years ago, I was offered another job, high-paying, but long commute and hours and other restrictions which did not suit me at all. I thought long and hard before turning it down, but that was the right decision. Amy, it's also extra hard, I have found, to work with/for a friend--almost always wrecks the friendship, unfortunately. Beware! It is okay to honor your own needs and not take on a situation you will not like.

    That said, please send me good wishes on mine! XO
     
  17. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Celia, I'm perfectly happy to send you good wishes. Again, anything more you care to say about the job offers?

    It's interesting to hear there are several of us in this situation with job possibilities. I admit I didn't expect angst about work, as a part of dealing with caregiving. When I type that, it seems silly. I have angst about everything else, why not this?

    Celia, you are absolutely right about being wary of working with friends. The main commitment of this job assignment, would be to help fill in while said friend is on leave (as if it weren't complicated enough).

    I like that backpack analogy; it rings true.
     
  18. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Amy, of course I don't mind the 'hi-jack' - it's actually quite helpful to me to talk about what appears to be a side issue. I feel it's a fact of life that we face many inter-connected issues at once, and it's quite hard sometimes to separate our feelings into logical compartments. So feel free to talk here!

    With regards to your job offer, now that you've explained about your 'pros and cons' list, I'm hearing something different! If there are 10 'cons' versus 4 'pros', then maybe it's not such a good prospect, after all? I'm not meaning to judge, just reflecting back what you have written.

    When I wrote about regretting not doing things, like you, there are some things I would not dream of doing - bungee jumping, for example! I'm not sure I would walk through fire either, even for my best friend! What would your friend do if you turned down the offer? S/he must have thought about that eventuality. If you do go ahead, maybe have an exit strategy, so you can leave if you have to, without damaging your relationship with your friend (too much). But please disregard my comments if not appropriate.

    I think I have more 'pros' than 'cons' on my job evaluation list - or I would have, if I had written one! The job is with a very good local employer, the people are really nice there, there is a good pension scheme, and I know the work will be sensibly paced. I know the people who will be interviewing me. My logical brain tells me there is absolutely no reason not to go for it. It's just the fearful little girl inside of me that is quaking at the thought of it. I know I will feel better once I've been for the interview, whatever the outcome. I do intend to give it my best shot, and if I fail, at least I will know that I really did try my best.

    Good luck to you too, Amy, whatever you decide to do. xx
     
  19. Beate

    Beate Registered User

    May 21, 2014
    11,481
    Female
    London
    The quantity of pros versus cons does not matter - it's the quality that counts! You could have only one con, but if that's the deal breaker, don't do it. You could have only one pro, but if that's the one making it all worthwhile, go for it.
     
  20. CeliaThePoet

    CeliaThePoet Registered User

    Dec 7, 2013
    614
    Buffalo, NY, USA
    My pro and con list about leaving my job had only job-pro on it--it's a mile from my home. So's the new place! Ha!
     

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