Stoop Neck after a severe decline

Discussion in 'I care for a person with dementia' started by Abbey82, Jul 5, 2019.

  1. Abbey82

    Abbey82 Registered User

    Jun 12, 2018
    Hi all,

    I've posted on other threads recently but my Dad (he's 60) was sectioned (due to agitation/agressiveness) a week ago now and is in the later stages of Bi-Lateral and FTD. We agreed for him to be given Respiradone and we knew one of the side affects was posture (our friend with the same as Dad experienced it also) however within 24hrs over bing give 0.25mg a 'tester' he developed a sever stoop and his chin is now touching his chest, they decided after 48 hours to stop the Respiradone and give him Procyclidine to counteract the effects of the Resp. However, that was 4 days ago and there has been no change, his neck is the same. They are now suggesting it could be his recent steep decline that has caused it, albeit it happened at the same time.

    It's heartbreaking because Dad is now going off his food because he can't eat it properly, he's also struggling to drink and he's banging into things and falling, of which he's never done before. I know he has had a severe decline in the last few weeks, which is why we are in this situation (meds stopped working) but I'm struggling to understand how this can just happen, if its common or wether or not it was the Respiradone.

    He is seemingly declining even further rapidly and this is having a big effect on it.

    Any one experienced similar ?

    Thanks, Adele
  2. canary

    canary Registered User

    Feb 25, 2014
    South coast
    My OH does not have a diagnosis, but has many symptoms of FTD. He has never been on risperidone, but he too has developed a severe stoop so that his neck is parallel with the ground. He also falls a lot.

    When you say that your dad cant eat his food properly, do you mean because his head is so far down, or is he having trouble swallowing it? Either way, I think the best people to ask for an assessment is the Speech and Language Therapy (SALT) team who are the experts in eating and swallowing problems.
  3. Abbey82

    Abbey82 Registered User

    Jun 12, 2018
    Hi Canary,

    Yes, trouble eating because of his head/neck location now, it’s confusing him and his cutlery is hitting his nose etc, disorientating. Funnily enough they referred us to SALT yesterday and we met the OT which was good.

    It’s interesting to hear that your OH has developed this too but with no Resp. I found some other threads on here from 7+ years ago with similar comments but can’t find out any other info. Sorry that your OH is going through this too
  4. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    Hi @Abbey82 , I am sorry you are going through this worry with your dad.

    Exactly the same thing happened to my husband in the later stages. He had to be sectioned due to his challenging behaviour while the medics monitored his medication and tried him on different things to see what might help, including respiridone , but it soon became clear that no introduction of new medication or tweaking doses of current medication was going to help this time around.

    I say this time around because he'd had a crisis two years previously which had also led to him being sectioned due to his challenging behaviours, but on that occasion, after some adjustments to his medication, he was able to return home - giving us two more precious years at home with him.

    Although the neck posture change happened after being admitted to their care in the most recent incident, I don't believe respiridone was the cause of it, besides which, he was only on it for a week as it was not helping.

    I know how distressing it is to see a loved one like this. As you say, it is difficult for them to eat and drink in that position. My husband did try to eat when offered food on a spoon (I had to approach him from an awkward angle to get the spoon to his mouth). Initially he would swallow the food, but gradually he stopped even that - and the food would just sit in his mouth or fall out a while later.

    We tried introducing the use of a soft collar support at meal times, which helped a little initially - but eventually it was impossible to even lift his chin enough to fit one of those.

    It also reached the point where a gel pad had to be placed between his chin and chest to prevent pressure sores developing.

    In addition to the bent neck posture my husband started to develop contractures in his hands and I was told that the two physical changes were not uncommon at the advanced stage my husband had reached.

    Towards the end my husband just took fluids as and when possible. He seemed to do better when I was helping and would take small sips of Ensure or juice from a cup if I could gently support his chin to get the cup to his lips. On some occasions I know that staff had to resort to giving him fluids through a mouth syringe (like the kind you get with some medicines, but bigger).

    He was in a recliner chair which helped the angle of his head during such times, but of course, huge care had to be taken so that he did not choke while in that position.

    I don't know if there might have been any slight improvement had things continued. There was to be a multi-disciplinary team meeting to discuss what feeding options were suitable going forward, but as it was my husband developed sepsis and did not survive that.

    My consolation was only that the lack of food and fluids did not distress my husband at all. It was a slow and natural withdrawal as his body slowly started to close down. The distress is very much what we go through as we watch this happening to our loved ones though.

    I hope the medical team working with your father will be able to find ways to make things more manageable for him in general. I am thinking of you.
  5. Abbey82

    Abbey82 Registered User

    Jun 12, 2018
    Lynne, thanks for much for the honest and heartfelt response, the situation sounds very much like the one we are in now. I wonder if I may ask, when your husband was sectioned first time around, how progressed was the disease for your husband? and if I may ask also, was your Husband at home in the later/end stages after the second sectioning, prior to the sepsis ?

    I have a feeling that there are going to be no medication options for my Dad but that this Stoop is making things progress even more. I went to see him today and I managed to check under his chin and gave it a wipe/wash to make sure it wasn’t sore (yet)

    We would love to have him return home for whatever time he has, if it is the best thing for him. We have a DNR in place as I don’t want his suffering to prolong under any circumstances. I can’t help but think being in a secure unit makes things progress even quicker, although he has no idea where he is, he is still communicating in some form but cannot make full words or sensible sentences.

    Thank you again for sharing your experience, it helps me to know what maybe going on but appreciate it may be difficult for you
  6. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    Hi @Abbey82 - no I don't mind talking about it. Hopefully some of it will be helpful to you and others going through similar.

    The first time around when my husband was sectioned he was in the moderate stage (bordering on severe). He still had a lot going on in his home life that he could enjoy (with my help) - from memory cafes, day trips, a fantastic day centre, theatre trips, family events etc. His general health was good, he was mobile, compliant with medication and he ate and drank very well. Although he had lost mental capacity to make decisions he did know he was not at home (he thought he was in prison) and that he wanted to return home. Right from the start it was our aim to get him back home to continue that family life in the family home - and after four months of medicine tweaks we reached a stage where that was possible.

    The second time around (two years later), my husband had seen a very sharp decline over the preceding months and was well into the severe/late stages of the disease. His ability to communicate had dwindled to occasional words, he had just reached double incontinence, his sleep patterns were erratic as he lurched from days of very deep sleep most of the day to days of not sleeping at all (sometimes going 48 hrs solid and at risk of falls as his mobility started to go downhill, without a break for him or me). His behaviour became increasingly volatile and he had to be sectioned to a general secure unit for a second time.

    We were fortunate that, after a couple of weeks, a place came up at a dementia specific secure unit at a hospital a short distance from us. The staff were very experienced with all kinds of dementia. He gradually settled into these new surroundings, never once asking about home but enjoying visits from me. Our goal was to try to get him back home to us if they could get him to a point where his paranoia, hallucinations and anxiety could be managed again - and if we could get him into some kind of manageable sleep pattern (so that I could look after him with adequate sleep myself).

    Well, they tried very hard to get on top of these and other issues - but after nearly five months it was clear that he had reached a point in his disease where the medications just weren't going to help any further.

    He had arrived being able to walk, eat and drink - but within a short time all these abilities declined and the downward neck posture and contractures started to creep in. He had moments when he would smile, but mostly he was just in his own bubble. In our case my husband declined quickly due to the stage of the disease he had reached. His decline came inspite of the medical care and the different medications he was tried on - not because of them.

    So no, sadly it was not possible for him to return home this time. Due to his increasingly complex needs he required 1:1 24/7 nursing care. in fact plans were just being put in place to transfer him to a specialist nursing home when he developed sepsis. In his weakened state there was no coming back from it - and the DNR came into place.

    I can only praise the palliative care team for the fantastic care my husband received to keep him pain free in those final days. Although I couldn't bring him home to care for him, I stayed in his hospital room, by his side day and night to be there for him while the experts took care of his personal and medical needs. It was as good as we could both have hoped for at that final stage.

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