Help for newbie carer please

Discussion in 'ARCHIVE FORUM: Support discussions' started by pamaris, Jun 17, 2007.

  1. pamaris

    pamaris Registered User

    Jun 17, 2007
    10
    Hello,

    I am a newbie, and I hope you guys can help direct me!

    Currently we are staying with my mum in law, in her house. In December 06 we came to live with her after spending a few years overseas. The plan was just to stay for a few months while my OH looked for a job. We hadn't been back to the UK for 4.5 years because of financial issues, so we were shocked to find that she weighed less than 7 stone, after being about 12.5 stone her whole life. We knew something wasn't quite right... but didn't suspect anything.

    Within 2 weeks, she came down with life threatening pneumonia and sepsis. She was in hospital for 2 weeks. She also had a slight heart attack while in hospital. A week after being discharged, she had a stroke. She spent six weeks in hospital this time, and during that time she had bouts of delusions and hallucinations, and was quite up and down mentally and emotionally. By the time she came home, she was doing much better. However, since coming home, she has deteriorated. She does not eat most of the time, and averages about 500 calories a day... many days her calories come solely from nutrition/ milk drinks. She does not get out of bed; just stares into space. 2 weeks ago she had a TIA/ mini stroke. She was in hospital for 3 days. On the day she was to be discharged, she walked out of the hospital and showed up at the door in her hospital gown. She still had the IV cannula in her arm, and she was waving at and talking to her friend's husband, whom she had duped into giving her a lift home, insisting he was standing in the garden when he had clearly left. She has spent the past 2 weeks in bed, not with it at all but not apparently hallucinating or delusional.

    However, since yesterday, we have been very alarmed and troubled... she thought my husband (her son) was her deceased husband, and last night at about 2 AM she got her handbag and put on her shirt over her nightie and insisted she was at "Relate" relationship counseling with her deceased husband, and would D (my husband) please fetch her home? She was talking for ages, with no one in the room, to God knows who... anyway right now she is in bedl... but we don't know where to go from here.

    We have two small children and we are worried that she will put them, us, or herself in danger. She has over the past 24 hours started clearing her throat a lot... very noticeably... is this significant?

    What do we do? Who do we call? At this point she weighs less than 6.5 stone... for the past few weeks we have been worried about her health; now we are worried about her (and our) safety. She is 64 next month. I do not think it is alzheimers, since she has the background of the recent strokes... Since she was signed out of the hospital in apparently good health, she has not had any follow up care (aside from seeing her GP) and things are deteriorating. Do we just call her GP?

    What do we do if there is a situation where she is delusional/ hallucinating/ talking nonsense? Just try and calm her down? Call 999?

    Sorry if this is all a bit of a jumble; just trying to give as much info as possible. She has multiple other health conditions, such as diabetes, depression and an intestinal cramping problem that is yet to be diagnosed.

    Thank you.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,903
    Kent
    Hello pamaris, welcome to TP.

    It sounds as if your MIL needs a doctor urgently. Hasn`t her GP seen her lately? If not I would request a home visit first thing tomorrow.

    There seem to be so many different problems, she should really have a thorough medical examination. Has she attended any out patient appointments since she left hospital? What have the medics said about her health.

    I really don`t think you or your husband can make any decision about her until she has seen her GP.

    Please let us know how you get on.

    Take care
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Pamaris,

    I agree absolutely with Sylvia that you should get the GP in asap.
     
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Hi and welcome to TP (although very sorry you have to be here).

    Unfortunately, although this varies, it has been my personal experience that if you don't raise these issues with the medical profession, (i.e. her GP) they won't get raised: the attitude seems to be "no news is good news". So if you want any help at all, your first port of call is the GP. There are medications available that may be effective for delusions or hallucinations. I say may, because they don't work for everyone, and the side-effects can be counter-productive. However, you won't know until you try. Incidentally, thinking her son is her husband is a delusion, while thinking someone is there when they're not is an hallucination. On the other hand, it is not uncommon for dementia sufferers to get the generations mixed up: as much as anything it seems to be about having "slipped" in time. For example, if your MIL thinks she's in her 30's she may well expect her husband to be in her 30's as well, hence she thinks the man in the house who is in his 30's (i.e. her son) is her husband. I spend a fair portion of my time as my mother's sister.

    You say she is essentially bed-ridden: is this through her choice, or can she not weight-bear? I'm assuming the former. It's sort of important in that if she can get up, she MAY get up, and do who knows what, which is what it sounds as if you are worried about. At least if she's in bed she's not roaming or turning the gas on. There are sensor pads available that alert when they are stood on: you might want to consider something like that. However, first you need to get some idea what is actually going on and for that you need to enlist the help of the GP.

    When she becomes distressed all you really CAN do is attempt to calm her down: provided she's not being violent calling 999 will have only 2 potential results. Either they won't do anything, or they'll possibly cart her off to hospital, and I can assure you that while that might remove the immediate problem, it won't provide a long-term solution.

    The throat clearing I can't help you with, although she may be having swallowing difficulties. In the NHS these issues are usuually dealt with by, suprisingly, speech therapists. However to access these services you need to, you've guessed it, contact the GP.

    It would probably be helpful for you to write down all your concerns before the visit: it can be very difficult to remember everything.

    Best wishes

    Jennifer
     
  5. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Pamaris,

    As others have said , the GP is probably the most direct route in at this point.

    Given that your MIL left the hospital in a somewhat "unorthodox manner", it might be helpful to know that there should be a formal discharge procedure that should include an assessment of how well the person can cope at home. This is detailed in an Alzheimer's Society fact sheet:

    http://www.alzheimers.org.uk/Caring_for_someone_with_dementia/Residential_and_nursing_care/info_hospitaldischarge.htm

    The GP should be able to get this assessment process in motion now that she is at home.

    Take care,

    Sandy
     
  6. pamaris

    pamaris Registered User

    Jun 17, 2007
    10
    Thank you,

    I have a list of questions for my husband to ask her GP tomorrow. Unfortunately, the doctors and nurses do not want to speak to me since I am not a blood relative. However, I am more persistent and assertive than my husband or her sister!

    To answer a question, she is bed ridden by choice... initially it was depression, now she is extremely weak due to not eating. However, as we found out last night, she has a bit more pep when she puts her mind to it.

    I will look into what we need to do to get a care assessment. This was offered after the initial stroke but she refused any help. Things are different now, and we can see that we need all the help we can get.
     
  7. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Advice already here brilliant as always ... but may I shift the focus?

    You are staying longer than intended at MIL's because of HER needs? And in doing so you are concerned for your own children and their safety with someone who is - at best - unpredictable and of concern to your children's welfare - emotional or physical?

    Of course, you are concerned for your MIL and want to secure the best of help for her .... but at what price if you believe you and your children are in any kind of danger? Should your own 'accommodation needs' sit alongside getting help for MIL as equal priority?

    I'm sorry if that seems to add more pressure ..... you are being so selfless considering others' needs .... but I worry for young children 'exposed' to such potentially difficult situations and their long-term understanding of what they may witness ........... even if you can 'spare' them some of the detail - calling '999' and having ambulances arrive as one plan of action is not prescriptive to children's emotional well-being.

    Sorry if that's of little help ..... just sometimes I think we need to focus more holistically on the impact on a family ...... and hope you can convey that to any medics concerned not just directly for your MIL but for all of you ......

    Love, Karen, x
     
  8. pamaris

    pamaris Registered User

    Jun 17, 2007
    10
    Karen, thanks for bringing up those points.

    Up to now I had not been concerned about safety because she hadn't really had any major delusional incidents at home. She had a few in the hospital, and the doctors did not seem concerned (!!!). They sort of brushed it off. The past couple of days was the first incident where I thought... wow she could really do something crazy.

    There is definitely a limit to what I am willing to expose my children to. I am not sure how much slack to give, or how many crisis situations we should deal with before we take action to change the living situation. I guess I'll know what my breaking point is.

    The dilemma is that it was never intended to be a long term situation for us to live here. Now that we are here, I am the "carer" by default. I don't mind helping out in an interim, transitory period, but I think we do need to figure out what's next; to have some sort of plan of action if things get scary. As mentioned, it just might not be appropriate with the little ones in the house.

    Another issue is that I hesitate to bring all of this up to my husband, because he is not ready to believe that this will possibly/ probably get worse and not better. I don't think he wants to take precautions for the worse case scenario.

    So... at this point we can't just move out. Before we came, she had been living independently for 5 years, and if all this had happened before we returned, another care situation would have been sorted out.

    Lots to think about.
     
  9. pamaris

    pamaris Registered User

    Jun 17, 2007
    10
    I just thought of a question... who does she need to be referred to to get the appropriate assessment and diagnosis? A neurologist or a psychiatrist? She saw a neurologist in hospital but it seemed he was only looking at physical symptoms (blood clots, etc.) and not taking into account the mental issues.
     
  10. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    I hope you don't take this the wrong way, I am trying to be helpful, not in any way critical, you seem a very caring person doing the very best you can to look after your mother in law..... but maybe you should try to have an honest talk with your husband this evening about your fears and worries.

    He will be able to discuss things with you that may be worrying him too.

    My Mum has AZ and although she has always been a second Mum to my husband.........his own mother sadly died 31 years ago........ he is not as emotionally close to her as I and my sister are, the mother/child bond can be a very powerful one, even when we are adults.

    I suppose I am trying to advise you not to assume that he will feel the same way about any difficult decisions involving her care as you do.

    Good luck with the doctor tomorrow.

    Kathleen
     
  11. pamaris

    pamaris Registered User

    Jun 17, 2007
    10
    Thanks Kathleen,

    Unfortunately my husband has depression and does not always deal with stressful emotional situations in a calm and collected way. So... I have to choose my words carefully... especially at the moment; he feels a lot of (unnecessary) guilt and responsibility about what is going on with his mum. He's doing alright I suppose; I just have to be wise about when I bring up some of these matters. It helps for me to be armed with information first.
     
  12. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi

    I really don’t see why you cannot attend the appointment tomorrow with your husband, you may not be a ‘blood’ relative, but from what you are saying, you are the main carer, and therefore by default the person most likely to have good insight into MIL behaviour and problems.

    At the appointment I would ask for an URGENT referral to a Consultant Geriatrician who can confirm or rule out dementia, and if necessary embark on a regime of medication. He/she can also then refer you onto a Social Worker (some times attached to the same Team), also a Community Psychiatric Nurse. Through these people you can then access things like carers coming in to help you, also possibly a day centre facility.

    I would also ask for an Occupational Therapy assessment, they will help with any issues of mobility etc.,

    Please let us know how you get on.

    Best wishes,,

    Cate
     
  13. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Pamaris

    Usually the referral is to a psychiatrist or an elderly mental health consultant, depending on yur MIL's age. The GP will decide that, the titles vary from area to area.

    I'm sorry you are having to cope with your husband's depression too. I can understand that you are walking on eggshells. All you can do at the moment is get the GP involved, and press for an early diagnosis.

    Once you have that, you can call in SS and see what support is available for you. With a diagnosis you can also apply for attendance allowance and respite care.

    Let us know how you get on.

    Love,
     
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I do hope when you make the appointment with your husband can say
    Without the worry of worrying what your husband reaction going to be , seeing that you said

    As you say You are assertive , I was wondering could you assert your s self over you husband, with out hurting his feeling , just referring to what Cate said also to your husband "you just want to rule out dementia " trying not to use any negative statement about his mother as in talking nonsense unless his also refers to it as that.

    I only say that because you did you said
    Yes
     
  15. pamaris

    pamaris Registered User

    Jun 17, 2007
    10
    Hi everyone,

    I just wanted to say thank you for all your helpful comments. I am not sure how I come across, but in case I appear to lack sensitivity to what my husband & his mum are going through, it is just due to frustration at the situation and lack of time in typing out my responses. I know that he (and his mum) are suffering much more than me, but since I am the one without years of baggage and expectations about what Mum is "supposed" to be like I just want to be as helpful as possible. Hopefully I can use that perspective to be objective about things. It seems her friends and family are not exactly in denial, but not ready to face the possibility of what it could be. For example they keep saying, maybe it's just her tablets...

    Maybe, but I doubt it since we know for sure that a) her confusion and forgetfulness predates her "tablets" and b) she has a history now of having repeat strokes (which is apparently the cause of vascular dementia) and c) Her scans verify that she has cerebral atrophy.

    So, drawing from your advice, I have made a detailed list of Mum's symptoms over the past 12 to 18 months and the times of their onset. I told DH to get the doc to come to the house, so that he can see how she is, and also so that we can be very clear and detailed in filling him in. Basically, what I have mentioned to my husband is that she needs to be assessed by a geriatric consultant, neurologist, psychiatrist or all of the above for Alzheimers and/ or dementia or some other related disorder. This is what we will (strongly) push for.

    What is difficult is the uncertainty... the fact that at any moment you don't know what is going to happen. At this point she is "with it" just enough to know she is not well and so she is staying in bed. This morning she took a bath at 5 AM (after already having a bath yesterday and averaging a bath every week or 2); slipped and my husband jumped out of bed. She was OK... but then she put on a jumper and knickers and that is what she has been walking around the house in today.

    It is really hard for me not to treat her as if she is dangerous. I am very conscious of this... I want to treat her with respect... but she needs more supervision than my 2 year old. It is hard not to jump every time she coughs or drops something. You want life to be as peaceful as possible and not to act out of the ordinary towards her, but it is just hard. You guys know this much better than I do.

    Also I know that we can't stay here forever; the time will come for us to move on, and what will she do/ we do then? One step at a time I guess.
     
  16. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Well I suppose it all depends on what the tablets are for. However, from what you say it is very likely to either be vascular dementia or mixed (i.e vascular and AD: a lot of people end up with this diagnosis).

    I know what you mean about baggage and expectations: I find it considerably easier to deall with my MIL's problems than with my own mother's.

    One thing I did want to say: one of the things that is fairly common when we start this journey is a desire for a diagnosis: somehow it seems that having a name for the problem will make the whole thing easier. However, while a recognition that there is a problem can be helpful (actually vital) from the POV of obtaining services, the reality is that 1) very few end up with a diagnosis that is 100% certain, and 2) even if it is, it makes very little difference to the practicalities. With a few exceptions, dementia is not treatable. True, if the diagnosis is AD, there are some medications that "may" help and there are medications to help manage symptoms, but for the most part you are left trying to manage what is a progressive, probably terminal, illness. Not a cheery thought, I know, but it's best to be prepared (as much as you can be - there is no way to prepare for everything).

    Best wishes

    Jennifer
     
  17. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    I think you would be wise to discuss your concerns about your children's safety with the specialist you see. Has your MIL shown any tendencies to violence so far? If not, you may be worrying unnecessarily - BUT I am not a doctor, so please DO take advice!!

    Whilst hallucinations are very distressing for us to observe, if they are harmless ones (ie. ones that do not cause huge distress or anger) you may find there is nothing to fear. Again, do be advised by someone with specialist knowledge AND who has met your MIL.

    As for the progress of the disease, it sems impossible to predict. Each case is so different. Some very rapid, others very slow. As Jennifer says: but for the most part you are left trying to manage what is a progressive, probably terminal, illness.

    Wishing you all the best.
     
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #18 Margarita, Jun 19, 2007
    Last edited: Jun 19, 2007
    I am not sure what it means ?



    I hope you did not think I was referring that you come across as insensitive , as I feel that you come across as very caring , as that is why I was suggesting an alternate why of wording your words to your husband , so not to get his back up.

    I was also in your husband shoes, back then

    I new what my partner was telling me was the truth , but did not want to admit it, just don't want to hear it , because you know its going to be a burden on the relationship , all he keep telling me is that it was going to get worse with my mother, as his sister was a nurse in a NH so he new what pursuer , stress it would put me under caring for her also he had seen it with his SIL, when she cared for her mother at home , but they stayed together .

    so he wanted me to put my mother in a home .

    he then said my mother or Him !

    worse thing he could of said to me at that time, if only he could of sanded the test of time with me ( or me with him in me not taking him so negative ) things may of been different now , but he was to head on. so he lost. then later on denied he said that

    Thats just my story.
     
  19. pamaris

    pamaris Registered User

    Jun 17, 2007
    10
    Well the GP is coming this evening. I have a long and detailed list to discuss with him and DH. I think the GP may admit her to hospital on the basis of malnourishment... I'd be surprised if she weighed 6 stone at the moment, and she has averaged 500 calories a day for the past month.

    I'm going to approach it from 2 vantage points: One being the immediate concern of malnourishment/ wasting away. Second being the possibility of dementia/ Alzheimers or some related progressive disorder. He only became her GP 6 months ago so he doesn't know how she "used to be". I have a list of her symptoms and the time of onset... plus she has every risk factor for vascular dementia.

    I know that getting a diagnosis and qualifying the condition won't really change anything. But at least maybe it will open up avenues of care and support that we are not currently receiving.

    Wish me luck.
     
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    That is so true
    Good luck , let us all know how it go with the doctor xx
     

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