Need some ideas to help me calm down

Discussion in 'I care for a person with dementia' started by Motherof3, Jan 25, 2016.

  1. Motherof3

    Motherof3 Registered User

    Mar 9, 2015
    13
    I'm still trying to calm down after visiting my mum (who has Alzheimer's) on Saturday. She has had a live-in carer for the past nine months but now that she is incontinent most of them are struggling with her behaviour, and usually need help to get pants off or on, or to wash her. I had to follow her around the house for a while to get the incontinence pants back on, and at one point she tried to hit me. Often the only way to get her to do things is to constantly baby her, put your arms round her and rock her, and after doing that I want to scream.

    I was tense by the time I got home on Saturday and felt worse and worse all through Sunday, culminating in a massive snotty crying fit after tea. I'm a bit better today - I had a stiff drink to stop me crying and a friend came round for the evening - but I still feel like my stomach is jumping up and down and I'm struggling to concentrate on work (I work from home). I can't think of anything to help me feel calmer and clear my mind other than going to the GP and demanding anti-depressants, and I'd rather not do that.

    I am my mother's eldest child; she has a live-in carer and my sister and one of my brothers visit every day. I go up there roughly every 2-3 weeks. I used to go more often and do the veg garden (mum was always a keen gardener) but I've found it increasingly difficult to cope with her behaviour over the last six months or so. I stay calm whilst I'm with her but then go home, feel dreadful and angry, and often can't speak to my husband for several days. He's not great with emotional stuff, and at present he's really dismissive and annoyed by my feelings, partly I think because he's stressed himself about other stuff and I don't have any energy for him.

    I think mum needs to go into a home because most of the carers we get can't manage her behaviour around the incontinence very well, but my brother and sister want to keep her at home.

    I feel desperate. I hate feeling like this but I don't know how to make myself feel any better. I go out for a walk with my dogs a couple of times a day but after weekends like this I can't get my brain to stop whirling, and I often stuff my face with food and then feel sick on top of that.
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,777
    Female
    South coast
    Hello Mo3 and welcome to Talking Point.

    Im going to start with a big (((((hug))))) because it sounds like you are having a pretty awful time and, TBH Im thinking that you have reached carers breakdown.

    I think I am with you over your mum needing to go into a CH. If she has started being violent and the carers are beginning to have trouble managing her then I think that pretty soon they will refuse to continue the contract. It is often the way with families that one or more of the family members refuses to acknowledge that there are problems with the current situation until there is a crisis. You may want to start looking at care homes just in case the crisis arrives sooner than you are expecting.

    In the meantime - can you go away on holiday? I really do think that you need a complete break (aka respite).
     
  3. Motherof3

    Motherof3 Registered User

    Mar 9, 2015
    13
    Thank you

    Thanks Canary. What you said about a break rang true so I've booked a weekend away - this weekend! Great timing as it's the last one hubby and I have free for a few weeks.

    Why am I struggling with mum's behaviour more than my siblings appear to be?
     
  4. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,051
    GLASGOW
    Its possible they are struggling too but don't want to admit it. Or it could be they are so set on her staying at home that they think this situation is fine.

    I think after your holiday you need a family conference. Maybe look at why your sibling want to keep mum at home?

    I don't think I could have coped with your situation at all. Incontinence was the line for me that I was not willing to cross. Thankfully mum refusing to drink and getting dehydrated got the decision made for me by social services. Social workers get a bad press but hers was a gem. She got the timing just right for mum. We tried as long as we could.

    Does your mum actually know she is at home? This all a pointless exercise otherwise.

    Keep posting as your husband might not be able to help or listen but we can.
    Love Quilty
     
  5. elizabeth ann

    elizabeth ann Registered User

    Jan 17, 2016
    7
    poor you i do sympthise

    Your post really resonated with me - i know it is SO tough and its really difficult when siblings have differing views regarding the best way forward.
    i think perhaps it has come to the time where she will be best cared for in a nursing home but it's never easy making the decision - but remember you all deserve a life too thats not lived on the edge. good luck:)



     
  6. Motherof3

    Motherof3 Registered User

    Mar 9, 2015
    13
    Thank you, I really need this. Phoned my husband to double check he was free this weekend, then booked a hotel, now he's been on the phone to moan that I've paid too much and why didn't I shop around more?! Because I have no brain cells free, that's why!!!
     
  7. Bod

    Bod Registered User

    Aug 30, 2013
    1,180
    If you feel she should be in a home, but your siblings don't, then step back, let them do the caring.
    It maybe, they have a different method of handling your mother, that works better.
    If not they might soon come around to your thinking!
    Step back get your life settled, then you will be in a better place to help.

    Bod
     
  8. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,125
    eastern USA
    I agree with Bod, above. In my experiences with my mother (I am the last of her four daughters, and she has lived with me since 2008), I find that one of my sisters is a caregiver type, and two (the two oldest) are not. Part of this comes from their own older age (I am 14 years younger than my oldest sister) and part from personality.

    If your mother has carers in *and* care from your two siblings, then she is being cared for, probably more than if she were in a facility. Why not let the two who are on site all the time make the decisions? Unless they are berating you for not being there, then let them handle it. It sounds to me that if the situation is upsetting to you but not so much to them, then they don't mind caring for your mother, whereas you find it too trying to cope with. So it's good your mum has them, and it's good for you that you don't see her all that often.

    Speaking of my own situation, I used to resent that my sisters were not doing *any*thing and here *I* was doing everything. But they are not caregiver types, and so the care they gave my mother was not really all that great. My mother responds well to my care, and there it is.

    Eventually, you might want to find a rest facility for your mother, so you might be able to help your siblings by finding possible sites and checking them out for them, but in the meantime, give them the space they need to handle your mother, and give yourself a break. Not everyone is cut out for this work, and it's not a crime not to be a caregiver type.

    Try to relax. Take a nice holiday with hubby. If you can cancel the expensive place, do so, and find one more to your husband's idea of price. Love yourself. Give yourself a break. Let the others handle your mum, and she and they might be able to make whatever decision will be needed down the line without family squabbles arising.

    Best wishes to you.
     
  9. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Talk to your brother and sister and outline your worries and say what you can do to help. It sounds like you have to travel to see your mum. You are doing your best. Try to take a break.

    Aisling (Ireland)
     
  10. Motherof3

    Motherof3 Registered User

    Mar 9, 2015
    13
    Thanks CJ, and I salute your efforts and patience with your mother. I feel horribly guilty about all the work my sister and brother are doing but I'll just have to work harder at letting that go. They have chosen that way forward and they're not angry (that I'm aware of!) that I don't do more.

    I've cancelled my first hotel booking and found another deal (cheaper, better) with the same hotel! Hurrah! And hurrah for credit cards!
     
  11. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,125
    eastern USA
    O I am so very happy for you. You're right: this is the life your sister and brother have chosen. It can feel very rewarding to take care of someone in your mother's situation. But such work is not for everyone, and if it only brings you stress and strain, it is not work for you. I imagine your siblings recognize this, and so now you have recognized it. You can help them better by being there (emotionally) for *them* as best you can. One thing might be to cook up a meal for each of them or for everyone and take it when you go; do the laundry; do the shopping; run the errands - all by way of leaving the one-on-one care to them.

    This is how I do it with my one sister. She wants to help, but she just can't bring herself to. So when she visits, I set things aside for her to do that will help me - cooking, shopping, sewing hems into pajamas I've bought, and so forth. That way, you have a chance to relieve their workload without causing undue stress for them or for you.

    I have learned about overstimulation recently. When my one sister who really doesn't want to do this work came for a visit, my mother became extremely agitated. Turns out, having her around brought my mother some stress, because she was unfamiliar. so we now limit the amounts of time the "newcomer," whoever it is, spends with her, and we give her "face time" with me to substitute. That means my sister can make the dinner for us, and I can enjoy my mother for a change instead of running around trying to take care of everyone.

    You have a nice holiday. So glad you got to look around and find a cheaper but lovely accommodation. That's good. Take it easier on yourself. There are other ways to help your siblings and your mum without having to place her in a home . . . .
     
  12. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    So sorry to read what a difficult time you are having at the moment.
    I agree with Bod, step back and let the others do the caring. If they are happy with the way things are then perhaps they are different when you are not there or perhaps they just see things differently which make it easier for them to cope. People used to tell me my mum needed to be in a home but I didn't think so and she didn't want to and I felt that it was up to me, I was doing the caring not them!!

    I think if you have a break and go for a shorter time when you do visit then perhaps that will take the strain away. You need to put yourself first and then you will begin to feel a little bit better.

    Take care of yourself and have a lovely weekend away xxxxxxxxxxxxxxx
     
  13. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Hi, Motherof3, and I am very sorry to hear about all the stress and upset. Fizzie is right, you sound like you're having an awful time.

    You have gotten excellent advice and suggestions here and I think it's great you've booked a weekend away with your husband. That will give you something to look forward to (I find this very important) and a break and some time for the two of you.

    I want to say that I really hear you that you are having difficulty both with your mother's dementia and care, and your reaction to it. It's really hard, on so many levels, and you are only human. Others here, myself among them, know that feeling of anticipatory dread before a visit, the forced calm during, and then the distress and upset afterwards. As you say, it can have effects for days. I just want you to hear that you are not alone or unusual in your reaction (for whatever good that does).

    I wish I had an answer for you about why you feel you're suffering more than your siblings. I am probably not the best person to tackle this, as I'm an only, but from what I hear here on TP and in my support groups, sibling issues, of all sorts, are not uncommon. Perhaps your siblings are having just as hard a time, but not talking about it. Perhaps they handle it differently, or don't do feelings, or simply have a different perspective. It sounds like you have to travel further to see your mother than your sister and brother who provide care. It may just be a different experience for them right now.

    You also mentioned feeling guilty. We all know that feeling of guilt, to whatever degree. A lot of people here on TP call it "the guilt monster" and standard advice is to bash it around the head before it can get hold of you. Sometimes guilt stems from what we think we ought to be doing, or what we think we're not doing well, or that we're bad daughters or bad people. Please try not to be so hard on yourself and to be kind to yourself/forgive yourself. Again, easy to say, difficult to do.

    Here are some other thoughts, and responses to your post, that I had:

    -what about some support for you? TP is a great place and is always open, and I not only get great advice and support here, but also learn a lot from reading all the posts, old and new, on a variety of topics, so it's a place to start. Something else that's been helpful for me is going to support groups. Being in a room with other people who understand, don't judge, and have a kind word, can be really helpful. So I wonder if there's a carer's cafe or other support group in your area you might attend.

    -on the same topic, and I am not saying anything negative about your husband, but it sounds like he is not providing a sympathetic ear for you right now. This is one reason I suggested both TP and in-person support groups. In addition, is there a friend or family member you could have lunch or coffee or a phone call with every so often, who could provide you with a kind ear and some support? I know that in dealing with dementia, many of us find that a lot of friends can't deal with it, so the friends either disappear or we just don't talk to them about it, but sometimes you will find there is someone supportive. If that's not possible, then how about scheduling time with a friend, not to talk about the dementia stuff, but just to be sociable?

    -you could also consider talking to your GP and/or maybe finding somebody to talk to, a therapist, counselor, anybody really, just a safe place for you.

    -don't forget about time for you. That could be stupid television, going for walks, an exercise class, a hobby you like, anything really, but try to make sure you get a little time for yourself every week. Easier said than done and I'm definitely guilty of not doing this, but it's good advice nonetheless.

    -there was a recent thread that doesn't exactly address your issue, but does talk about coping strategies for before and after a visit. If you have time and are inclined, you might have a look. http://forum.alzheimers.org.uk/showthread.php?88255-Coping-with-visiting-Mum

    -I agree with Quilty's suggestion of a family conference, especially if you haven't had one lately. It can be a chance to raise concerns, brainstorm ideas, and clear the air. If you live further away, perhaps a possibility would be for you to provide less hands-on care, but do some of the administrative work that can be done remotely, such as paying bills (online banking is a lifesaver), ordering supplies, working with the bank/accountant/chemist/whomever, arranging for cleaners/gardener/handyman/whatever, sorting out issues, that sort of thing. (If and when your mother moves to a care home, those responsibilities change a bit, but don't disappear, and it all takes time and energy.) Having a formal arrangement with your siblings might alleviate some of your feelings of guilt about them providing more care and help you to see that you are caring for your mother.

    -since it's always possible (because of decline, a change in condition that needs increased care, or other unforeseen reasons) that your mother might need a care home, at some point, whether for respite or permanently, it might help for you to research care homes now. It's easier to do this when it's not a crisis/emergency situation. You could even just start with some online research and phone calls.

    The Alzheimer's Society has a lot of good information, and factsheets, on their website and you might have a look. Some of it might be helpful for your husband to read (tell him it was my idea). The Alzheimer's Society and Age UK are also places you can call if you are feeling upset or need some advice or somebody to talk to, who will understand the issues involved. Here is a place you might have a look: https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200358

    And here: https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200351

    Wishing you all the best.
     
  14. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    I really agree with all the things that Amysays, and some brilliant suggestions there, except I don't think I would go for the family conference right now - you are so wound up that it could be disastrous. I think I would just say I was unwell and it wouldn't be fair to visit at the moment (that is true, you are not well) and that you be back for short visits as soon as you are feeling better. I think that to get into an argy bargy with them about things when you don't absolutely have to would just be too stressful right now x In our family anyway you have to be in gladiator mode to call a conference and it doesn't sound as though you are quite up to that at the moment :p

    Please try not to feel guilty (easier said than done) - we are all different and take different levels of stress and sometimes it is important to step back, take some care of self and then be ready to move forward again.
     
  15. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Fizzie, you are absolutely right and I should have been more clear, about having a family meeting. Definitely not now, too much going on and too much of a chance of being overwrought and ending up with a negative experience. I only thought it might give the OP a way to think about communicating with her siblings and not feeling guilty that she's not doing enough, and to think about all the ways to care for her mother. But not now!

    Mother of 3, you are under orders to enjoy your weekend, and, to the best of your ability, not worry about things!

    (so much easier said than done)
     
  16. Motherof3

    Motherof3 Registered User

    Mar 9, 2015
    13
    This is all really helpful, thank you, especially the thread about visiting a parent.

    My sibs and I all live quite close to my mum, btw. Sis and one brother are closest, then I'm about 15 minutes away and my youngest brother lives about half an hour away. It's generally good that it's so easy to see each other, I only occasionally want to emigrate to New Zealand!
     

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