Hurting at the moment

Discussion in 'I care for a person with dementia' started by Anon33, Nov 10, 2019.

  1. Anon33

    Anon33 Registered User

    Jul 28, 2019
    I came to the forum feeling so low about having yet another argument with my siblings about the situation we are in. It hurts a lot that I feel that no one gets it.

    I feel like I want to cut them out of the situation completely and reading previous comments it seems a decent coping strategy..... To save my own sanity, so I can carry on the care I am giving. A few of my friends understand. Some professionals understand. My family don’t.

    I am so hurting at the moment watching my Dad’s rapidly declining health. Watching my my mum struggling daily. Supporting both my parents on a daily basis.
    I am exhausted, mentally emotionally and physically.

    Earlier this week I had an appointment with my 10 yo daughter. So I wasn’t available for mum. ( my parents are in an attached annexe). So my mum rang my sister crying about how dad had been shouting and saying that mum was arguing with him all night when she was asleep, apart from helping him to the toilet.

    My sister sent a long message to me after the call , of places for me to call and get help. How we couldn’t go on like this. All the contacts I had previously called anyway and found dead ends.

    I cried so much. I felt so alone and tired. Her giving me another job ..why couldn’t she do it herself? Apparently I knew more, I live here.

    Sad thing was this appointment waiting room,while my daughter had a test, was actually some quiet time for me. I wanted to sort my muddled head out. I had bought a list. How to plan a normal Christmas, balancing finances, a to do list, and things my parents still need, a few bits of maintenance etc. I ended up with her texting me, telling me how to do it better. I am not precious and would have been quite happy for her to have made some calls, or she could visit, it’s 10 min in the car .

    Coming back to how to explain it, I was fortunate my dad signed a letter I can talk to his g p. All the time I was saying he was making up stories no one listened. When I started using language like he has false memories and confabulation I started to be heard. It was only once I had a good amount of research to backup what I was seeing was I taken seriously. It took a long time. Now dad has refused a diagnosis as he thinks he is fine so we are still finding it hard. however, It is now recognised within the local surgery and I am finding that as I build a relationship with his dr I am feeling more understood. However, this has been a very lengthy process and has taken most of my year.

    once I found the professionals to be in agreement on dads condition I found that family did shift and I had some help with the accommodation I created for my parents over the summer.

    Help from family is very much on their terms, if they are away or doing something else they can’t help. I never get to a place of doing something else because I am either too busy with all the appointments my parents have or supporting whatever happens that day, getting a meal, listening to mum cry, walking her dog, prompting, reminding, medications etc. Or just... Having far fetched conversations with dad and finding imaginative ways to distract. Trying not to get frustrated when dad recognises everyone we see on a car journey. Some days that’s harder than others. Sometimes I laugh and say funny old world. Sometimes I want to swear and shout and say it’s nonsense.

    people say what do you do for yourself. I am too tired to do anything.

    It’s not that my family don’t help. They pop in once a month, made a few frozen dinners, or have mum and dad to dinner occasionally. They think that they are helping a lot but it’s a drop in the ocean. How do I say that without sounding ungrateful? My siblings are both having other problems in their lives. I understand that, but I have other problems as well and still have sole responsibilities for mum and dad. Making all the decisions and having very emotionally difficult conversations.

    This is an exhausting situation. I feel honoured to share this part of my dads life with him and support him, I feel sad my sisters don’t have that. They don’t want it though, they can’t won’t don’t face it . Hard as that is for me to accept I have to walk away and get on with it. However much I want them to be involved. I can’t make them understand and they don’t understand that they are so far away from the reality of the situation we are living in, and I don’t have anymore energy Or time to dedicate to enlightening them.

    It’s all making me sad as I don’t want to create a rift in the family but at the moment bridge building isn’t on my to do list, as the bridge doesn’t lead anywhere.

    I have ranted again...apologies.
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    No need to apologise @Anon33 - a rant is sometimes just what is needed. No wonder you're feeling so sad. I hope sharing here has helped a little.
  3. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    Share your angst and get all the negativity out and onto paper (!screen?) and you will feel lighter in spirit although still weighed down by responsibility - that bit doesn't go away!

    Just a thought, do your parents each have Attendance Allowance?

    If not, it's worthwhile applying for this non-means tested benefit that could help you, help your mum and dad, maybe with extra care, befriending, daycare, housework, you can all decide what's best to spend the extra cash on.
  4. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    @Anon33 you have described perfectly the situation I found myself in when helping my dad care for my mum. I was there everyday - sometimes twice a day -didn’t dare settle down with a glass of wine in the evening in case I got the call to visit because mum had fallen and dad couldn’t lift her by himself.
    My parents lived about 5 mins car journey from me so I didn’t mind helping everyday.

    I have a brother and a sister and they too helped on their own terms. They live further away than me...40 mins for one under an hour and a half for the other so I didn’t expect them to be on call like I was. They could have shared the weekend care with us but they didn’t offer and, if asked, usually had other plans.

    I was exhausted, as was my dad and my mum’s sister.

    Two more people with dementia later, the last of them by myself and help wasn’t easy to find - at least not the sort of help that dad would accept.

    Like you I felt honoured to be a part of this difficult time in my parents and aunt’s lives. It brought me closer to them in a way I could never have imagined but a total of 12 years of caring on and least half of that time severely impacted by dementia and I feel battered...emotionally, physically and do my two daughters who were dragged through the mire of dementia care from their mid teens on. It has been the most difficult thing I’ve ever done.

    My relationship with my brother is over and I’m not sure about the relationship I have with my sister either. I hope it survives but only time will tell.

    One thing I do know is that the experience I had, as a child, of everyone pitching in and helping each other in times of crisis has not been passed down from my parent’s generation to mine. My dad was angry and upset by my siblings behaviour, as was my aunt (mum’s twin). Pleas for help fell on deaf ears. That’s in the past now but it still leaves a bad feeling.

    My days of caring for a PWD ended with the death of my dad at the end of last year...but the consequences are still ongoing.
  5. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I hate it when people who have no idea about dementia say "what you aught to do is..........."
    I nod and say "good idea - Ill add it to my to do list....... " (I dont)

    My brother did nothing to help mum when she had dementia and I doubt that I will have any further contact with him. Ive recently had a row with my daughter over OHs care. Families very seldom pull together and I have found it best not to rely on them for anything - it just leads to disappointment.
  6. CWR

    CWR Registered User

    Mar 17, 2019
    I am an only child, and was my mum's sole carer( she is now in hospital, awaiting a home placement), and used to get annoyed when cousins ( only seen at funerals) would ask how mum was. Since I have heard other people's stories, perhaps I should have been grateful I don't have any contact with the family.No hopes raised to be dashed.
  7. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    Oh Anon, you have so much on your plate and all putting a strain on your family too as well as yourself, it's not surprising you're finding your sisterr exasperating and adding to your stress rather than relieving it.
    But for all this I think she is trying to help. She is showing she cares, just being absolutely hopeless at it.
    I do think you should not attack her over this though. One day it will all be over but you and she will have a life beyond and these frictions now, exacerbated by strain, will all be history.
    Can you tell her (without being critical) that you are really struggling to cope, and ask if she can give you more help. Maybe think first what you would like her to do to help you so you can offer her a menu of suggestions. Maybe what you want isnt so much doing practical things as emotional support. Being willing to listen to you rant once a week on the phone or similar.
  8. Wildflowerlady

    Wildflowerlady Registered User

    Sep 30, 2019
    Hi Anon 33,
    I know only too well the conflict and stress created within family when trying your best with helping your PWD in my case my dad. Sister and I now barely correspond its not what I wanted its painful, really impractical and has caused a lot of angst. I suppose I am in the middle here I do help with dad but I know its not seen to be enough by my sister. I know and fully accept sister is more involved with her role for caring for dad since the end of June 2019 when I felt I had to support my partner more with his Parkinson's, my dad is 85 yrs my partner is 77 yrs I am 60 yrs. My care for dad had been identical to hers for three years his carers have been coming in for just over two years, my dad lives alone apart from his dog whom we basically look after too. I still visit my dad around five afternoons a week they are not necessarily long visits as he can be really moody and off with me. Dad can literally tell me to go, question why had I gone to see him and become paranoid if I go upstairs to check his washing bathroom clean etc etc and then will pick on me over the smallest thing such as putting his dog out for a wee making my visit stressful and unpleasant.
    I hope I am still viewed as a loving caring daughter but my sister and her constant battering of me makes me question how others view me. Dads carers that I know well have assured me they understand my position with my partner and his needs but some I have not met since not going to dad in mornings and new carers are starting all the time. My sister tells me I am letting dad down she says I have effectively "dumped him on his carers" but also let her down too she says I am not supporting her and I "put her in this position" meaning she is doing his breakfast every day. I am still trying to resolve things in my head and still trying to tell myself I didn't put her in this position she has some choice. Unfortunately my sister hasn't been understanding at all of my changing circumstances in my own home. My sister has expressed her lack of understanding many times in texts, emails and verbally in calls to my mobile phone causing my partner and I a lot of stress. My sister and partner have only met twice. We are at the point where I have had to block her calls and texts recently but I left emailing and also phone contact via my landline available should we need to contact each other if important/necessary. Sister is at dads for part of the morning so his landline is available too. My sister has made it very awkward for me as I could do things such as collecting dads medication, do washing, order dads microwave meals, pay care bill etc. My doing those things would relieve her of some stuff and also give back some of her time but basically she makes sure I can't by doing it herself before I get a chance. I do dads shop as she doesn't drive. I honestly want to help where I can but cannot leave my partner in the morning now when he needs my help most. My dad does have carers four times a day, I know how hard it is for my sister I have done the same role as her dad is doubly incontinent he has a permanent catheter we have both provided personnel care if carers are not around.. Please try not to let how you feel about your siblings lack of help come across to your parents it may well affect their relationship with them. I'm sure some of the unpleasant way my dad talks and responds to me has been influenced by my sister and I falling out, dad can be really nasty on some of my visits. It has got to the point that dad snaps at me when I offer to do something for him or his home as in his words "No don't you do that, be it on your head, it will upset your sister etc etc. It might be that my dad will only respond to my sister at a later date. When I needed to speak to her last week she wouldn't come to dads phone. Dad is well aware of the tension between us but takes her side and blames me as he isn't understanding of my partners condition. I'm not entirely sure why she hasn't accepted that Iv'e now got to be here for my partners needs in the morning you only have to google to see what Parkinson's can be like and he was diagnosed in 2008. Partner has started to become more unsteady on his feet and has had a few falls. I am 100% sure my sister and I will not have any relationship after dad has passed I feel quite sad but its so terrible between us now I don't think we can turn it around. My sister and I had only got back together in the summer of 2016 following a more than 20 year gap where there was no communication between us at all, our mother had died in the August 2016 so we needed to help dad. I can only say if you want to maintain a relationship with your siblings now and in the future that you continue to try and work something out between you. Perhaps it isn't possible, perhaps it will depend on how close you are generally my sister and I never were despite the fact I thought we had let the past go. You have mentioned they have some other problems themselves I have had to balance both dads and partners needs/wants its not easy and clearly not everyone is happy. If it means their help can't be personal care ? perhaps strongly suggest help with washing, shopping, bills sorting, appointments etc some stuff can be done whilst at their own home. I know I am doing what I can but I still feel guilt because my sister has made damn sure that I do. I am deeply saddened that having had a relationship back with my sister after many many years I have lost it again in the most unpleasant way possible. I can't see how we can repair the damage done as she has said the most hurtful things you could possibly imagine some stuff isn't even related to care of dad but a very personal attack on my partner and I. I really hope you can work it out with your siblings I only have the one sibling but to be honest I wish now we had not got back together as its been worse than all the years we didn't speak. I know my sister like you must be exhausted I also have to be honest and say I still find daily life exhausting. Just this past week I have taken partner to hospital, town, podiatrist, doctors and had Occupational Therapist visit come to see us, two dental visits coming up for him this week plus my own. My little dog is epileptic so needs medicating twice daily plus regular Vet/blood test visits so even though time spent with dad has changed my life at home has got busier too. I do hope things improve for you with your siblings and you get some much needed help from wherever that might be.
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    im sorry your daughter isn’t more supportive. I helped my Mum care for both her parents, travelling down to spend a week rack month with two small children in tow!

    I understand how attitudes have changed. I used to visit elderly distant relatives on these visits with the small children & seethe delight it brought. Attitudes towards our elderly have changed with the advent of social media. Even the programs on tV are focused on a younger generation.

    family values & those connections are more fragile now than ever. The need to post on social media the “latest activities “ “photos” “purchases” etc have left the basic human need of actually face to face contact behind. I for one don’t feel that technology is always beneficial in all aspects of life-
    - but hey I remember the internet being created!
  10. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    Everyone has a life of their own and commitments to other people and things. What saddens me, though, is when they put even the most mundane things ahead of giving emotional or practical support when it is needed. It is nearly 4 years since my stepson's true colours were revealed in their full drabness. At the A&E with my wife, concerned about the time we were having to leave our dog without chance of a toilet break, I telephoned him to ask if he could come to the hospital to sit with his impatient Mother whilst I made a quick trip home. He was just 10 minutes away but couldn't do it because he had arranged to meet a friend. That could not possibly be put off or even delayed. This was from someone who has turned being late into an art form.

    I realised then just how alone I was. I was wrong about that because I didn't know then just how much my sister would do to help us, both whilst my wife was at home and even now that she is in residential care.

    His subsequent behaviour over the 2 years following reinforced that her son would do anything to avoid helping his Mam, whilst criticising me for not doing enough. We have been estranged for 2 years now and my stress levels have been much reduced. He does still occasionally visit my wife but so rarely that I doubt very much that she knows who he is.

    It really is no surprise @Anon33 and you have my sympathies. Build on the relationship that you have developed with the GP and other professionals and try to filter out any negative comments from your siblings. Keep posting on Dementia Talking Point too as you'll find many others with experience, empathy and good advice.
  11. Lawson58

    Lawson58 Registered User

    I am so glad that you are finding support from your dad's GP as this could well be the most important help you will get. Our GP has been wonderful through all our troubles over the years and I trust him and rely on his advice and care completely. Most of the staff have been there for years and know us well.

    Our doctor has always listened to me and together we worked out a strategy to get my husband to agree to an assessment. My husband also trusts him and will take his advice which helps me a lot. GP has seen us through several hernia operations, prostate surgery, internal bleeds, nosebleeds so severe they had to hospitalise OH, and worst of all a cardiac arrest and all the horrors that went with that.

    I hope you build on the relationship you with the GP and that you get the help you need.

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