Hi Everyone,
I am posting here because I am hoping someone can give me some advice.
My Gran (80 this year) was diagnosed with ALS last month, after showing symptoms for a year. She has drop foot on her left side and has recently lost most of the strength in her left leg. Her speech is deteriorating also (she's slurry and mixes up words quite a lot). I also think that her decision-making and general ability to deal with 'life's issues' are also impaired, but this is just an observation that I have noted over the last month or so.
I work full-time, but I go to see my Gran for, on average, 2 hours per day after work and usually longer for at least one day over the weekend to do the 'bigger' household tasks and the like. I would do anything for my Gran- she is the only family member I have left that I feel close to, so of course I am trying my best for her. However, I am absolutely mentally exhausted. I am managing all of the appointments, arranging delivery and receipt of these deliveries for aids/equipment, doing all the housework tasks, doing her food shopping a couple of times a week, helping her get herself ready for bed every day and also still trying to maintain a grand-daughter/grandmother relationship. I am failing at this latter part.
I am really trying my best and I'm offering suggestions of things that can help or ways to work around things she struggles with and even trying to get other family members on board to try and share some of the caring duties (or even just taking her out because, presently, she's not going anywhere), but all of this is being slapped down as soon as the words are out of my mouth- either by Gran herself or by relatives not being available to help. When this is happening, my Gran tries to make conversation with me, but I am so frustrated with the situation/her attitude towards me and everything else/others' unwillingness to help, I am not doing very well at hiding how I feel and I know my foul mood is making her feel worse, but I can't stop myself.
By the time I get home, it is too late for me to see anyone else or do anything else and I am so wound up that I just unleash my frustration in a flurry of words on my fiance for at least an hour when I get home. Thankfully, the hospital set up a morning carer to get my Gran out of bed/dressed/washed/breakfast etc. (although, she rarely lets them get her out of bed or wash her, as she'd rather struggle than lose that dignity). What I really think would help would be to have an evening carer that does the exact same as the morning one, in reverse. I tried to get this across, as nicely as I could so as not to upset my Gran, and she said 'I expect I'll need it eventually', but she seems to only accept professional help like this when she's told to have it by professionals, so I don't know how long I'll be waiting for this to be put in place.
We have not yet been assigned an MND nurse and our first meeting with the multi-disciplinary team at the local Myton Hospice isn't until 1st May.
I am terrified that my Gran is going to explode at me if I keep trying to get her to accept help from people other than me (funnily enough, it was a similar explosion that eventually caused her to admit she needed to go to hospital to find out what was wrong with her). She's nearly 80, but the woman can shout when she wants to!
I am also acutely aware that I am pushing everyone else away because this situation is causing me so much stress and upset. I obviously know what's coming, which is upsetting enough, but having to watch my Gran die just a little bit more every day, whilst seemingly doing nothing to help herself live/cope is too much to bear. I actually felt suicidal over the last 2 weeks.
I wonder if anyone can give me some tips or just share some similar experiences so I can try and do the right thing. I really don't want to feel the guilt that is sure to come upon my Gran's passing, by thinking I could have done more, but, equally, I can't carry on like this because it's killing me that I've got no life outside of her and work.
Thank you all
I am posting here because I am hoping someone can give me some advice.
My Gran (80 this year) was diagnosed with ALS last month, after showing symptoms for a year. She has drop foot on her left side and has recently lost most of the strength in her left leg. Her speech is deteriorating also (she's slurry and mixes up words quite a lot). I also think that her decision-making and general ability to deal with 'life's issues' are also impaired, but this is just an observation that I have noted over the last month or so.
I work full-time, but I go to see my Gran for, on average, 2 hours per day after work and usually longer for at least one day over the weekend to do the 'bigger' household tasks and the like. I would do anything for my Gran- she is the only family member I have left that I feel close to, so of course I am trying my best for her. However, I am absolutely mentally exhausted. I am managing all of the appointments, arranging delivery and receipt of these deliveries for aids/equipment, doing all the housework tasks, doing her food shopping a couple of times a week, helping her get herself ready for bed every day and also still trying to maintain a grand-daughter/grandmother relationship. I am failing at this latter part.
I am really trying my best and I'm offering suggestions of things that can help or ways to work around things she struggles with and even trying to get other family members on board to try and share some of the caring duties (or even just taking her out because, presently, she's not going anywhere), but all of this is being slapped down as soon as the words are out of my mouth- either by Gran herself or by relatives not being available to help. When this is happening, my Gran tries to make conversation with me, but I am so frustrated with the situation/her attitude towards me and everything else/others' unwillingness to help, I am not doing very well at hiding how I feel and I know my foul mood is making her feel worse, but I can't stop myself.
By the time I get home, it is too late for me to see anyone else or do anything else and I am so wound up that I just unleash my frustration in a flurry of words on my fiance for at least an hour when I get home. Thankfully, the hospital set up a morning carer to get my Gran out of bed/dressed/washed/breakfast etc. (although, she rarely lets them get her out of bed or wash her, as she'd rather struggle than lose that dignity). What I really think would help would be to have an evening carer that does the exact same as the morning one, in reverse. I tried to get this across, as nicely as I could so as not to upset my Gran, and she said 'I expect I'll need it eventually', but she seems to only accept professional help like this when she's told to have it by professionals, so I don't know how long I'll be waiting for this to be put in place.
We have not yet been assigned an MND nurse and our first meeting with the multi-disciplinary team at the local Myton Hospice isn't until 1st May.
I am terrified that my Gran is going to explode at me if I keep trying to get her to accept help from people other than me (funnily enough, it was a similar explosion that eventually caused her to admit she needed to go to hospital to find out what was wrong with her). She's nearly 80, but the woman can shout when she wants to!
I am also acutely aware that I am pushing everyone else away because this situation is causing me so much stress and upset. I obviously know what's coming, which is upsetting enough, but having to watch my Gran die just a little bit more every day, whilst seemingly doing nothing to help herself live/cope is too much to bear. I actually felt suicidal over the last 2 weeks.
I wonder if anyone can give me some tips or just share some similar experiences so I can try and do the right thing. I really don't want to feel the guilt that is sure to come upon my Gran's passing, by thinking I could have done more, but, equally, I can't carry on like this because it's killing me that I've got no life outside of her and work.
Thank you all
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