BaffledOwl1970 Report post Posted February 16, 2012 Hi all - I was wondering if any Aspies here are carers for another relative? My mother has told me she has Alzheimers. I am the only child and the only other relatives live miles away in Gloucestershire (my aunt and my gran, who lives in a care home). My father left 20 years ago and lives in the same village but wouldn't be any use anyway. My mum certainly has Aspie traits, which make her relationships with people difficult. We get on well but we are both adept at hiding emotions and keeping secrets from each other, which isn't helpful. I have contacted the Alzheimers Society, but quite a few of their suggestions are geared towards NTs. Are there any Aspies in a similar situation? All the best Quote Share this post Link to post Share on other sites
darkshine Report post Posted February 16, 2012 I unofficially cared for someone for 2 years, about 12 years ago and it was hard work. Also my mum cared for my nan for the last 5 years of her life and I observed the effects of that over that time, I did it for a week while my parents went on holiday and found it to be very difficult and challenging. PM me if you want more details or have any questions about specifics Quote Share this post Link to post Share on other sites
Special_talent123 Report post Posted February 16, 2012 well not in a relative way. There is a carer that comes from an organization, i suspected that something seemed different about him. When i mentioned something about autism he were like 'I have aspergers', and used to work for NAS Quote Share this post Link to post Share on other sites
LancsLad Report post Posted February 17, 2012 I think you have to be very carefull here in that potentially you are taking on the responsibility for the well being of two people your mother and yourself. In my past I have been a foster carer with my partner and for a lot of the time we could handle the situation pretty well, too well to be honest as we simply got more and more workload from social services. BaffledOwl I think you need to be really honest with yourself and ask the question when I am at my lower personal levels in respect to metal health, physical energy levels etc... what am I capable of handling in this situation and take it from that point. As your mothers condition progresses things will also get harder not easier. I would then get the external support she requires based on these decisions. If you do this a lot of the time you feel you can offer a lot more and this is good as you can spend real quality time with your mother and be an excellent daughter in this difficult time for you both. My experience of being an Aspie and a carer was that when things got difficult the priority was always in our case the people in our care, after all we had agreed to take on the responsibility. The thing which had to give was me and I became at times a lot less effective as a carer. The sad reality is in these situations social services were unable to respond by for example taking the kids off our hands for a couple of days whilst I put some time into getting myself to a better place. Rather it was a case of "do you want us to try and place the kids with someone else it might take a couple of months to sort out though". I think you might find the same scenario happening, if you can't deal with yourself and your mum for a day or two what happens if you have taken on a lot of responsibility for her daily care? This is a really dificult issue to think through as there are a lot of grey areas in an ever changing scenario and we feel a very strong responsibility towards our parents and I suspect this is very much the case as an only child. I would not be too concerned about your mothers Aspie traits and whether others will be able to understand this, I am sure they will and an very unfortunate consequence of Alzheimers is that behaviour and maintaining routines is something which is difficult to manage and any professional will have experience in this area. BaffledOwl you have not said if you have a partner on the scene and if so what is her response to this if that is the case? I would make sure you have in place a very strong support network around you as you may well need to draw on this as time progresses. In conclusion my advice is that two people being ill is in no ones interest especially your mothers and a bit of selfishness might be the right line of action for both of you. Try and get in as much external support for your mother as you can. I can understand that she may not appreciate this with strange people coming into her home initially but she does need to think through what her diagnosis will mean in the future. Her reaction might be that she prefares you to look after her many people would. While you still can you need to be open and honest with each other and draw up a plan which you both agree to which respects the fact that as time progresses your mother will find it harder and harder to cope with daily tasks and will eventually need considerable support. She also needs to respect that you might not be able to guarantee the level of support she might require eventuality and this needs to be factored in now and a care plan put in place, even if it need not be taken up for quite some time which I am sure is what everyone wants as it shows your mother is doing well. I would be very wary of simply maintaining the status quo not talking about things and hoping for the best. Your mother has taken the first step in telling you about her Alzheimers diagnosis you now need take stock think things through from your own position and take things on from there. Best wishes. Quote Share this post Link to post Share on other sites
BaffledOwl1970 Report post Posted February 23, 2012 Hi all - thanks for all the comments and advice. I'm gradually increasing the amount of contact and time I spend with her - if I do too much suddenly she'll start with the "Are you checking up on me?" conversation and clam up even more. She has said she's enquiring about getting some outside help but hasn't clarified exactly what (I'll find out when I next go over - she won't talk much over the phone). The irony is that I work in a care home for people with moderate to advanced dementia and other neurological conditions, so every workday I see what the future holds in the form of the residents there. It might look strange that I can look after strangers but might not be able to look after my own mother. I do have a girlfriend who doesn't live with me, but she's said she'll help in any way she can. Some other friends have also said they'll provide a support network for me. I've found a couple of carers groups locally - one of the above friends pointed out to me when I said mum wouldn't go to an Alzheimers social group, "You need to go to groups for YOU, to help you". I've also discussed it with my psychiatrist who has said she'll provide extra support if I need it. Until then, it's one day at a time. Quote Share this post Link to post Share on other sites
butterfly73 Report post Posted February 23, 2012 Nothing weird about having more difficultu now that it's affecting you directly.. Not that you don't care for the folk you work with, but thís is your mom! You have a strong emotional bond with her.. Most of the time, when done with work.. you leave matters there, at work.. That cannot be done with your own mom. Even if you are at home, you will be busy with her! only normal, only natural: you are a sensitive caring human being!! It's wise to help your mom to get some help, other wise thru her GP.. but be open with what kinda questions you have. Don't go behind her back, so to speak.. enne Leuk dat je interesse hebt in de Hollandse taal . Hoezo Hollands?! wat zijn gastropods?!? groetjes Vlinder Quote Share this post Link to post Share on other sites
