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Chronically Ill depressed DM, loosing independence, refusing help.

(10 Posts)
AhAgain Thu 02-Mar-17 19:38:04


My mum is chronically ill. COPD (getting markedly worse over the past 15 months, and even more so the last two months (and has just been discharged today after a week in hospital for it). She also has IBS and fibromyalgia. She is 78. Her weight has dropped to 7 stone 2 pounds, she is about 5'1" tall (partially IBS, but a lot is "lack of appetite" and other reasons to ignore nutrition information). She is in remission for Stage 4 breast cancer (diagnosed 2 years ago) and previously had (unrelated) Stage 2 lung cancer (6,5 years ago). She has had a rough ride.

She has one friend: practical help but no real support (didn't visit her in hospital) and I am an only child. She doesn't have a social circle or hobbies or interests. I have really tried to encourage her, but to no avail.

Her COPD is getting worse (really beginning to effect what she can do). She still smokes. On top of that, she just admitted to me (two weeks ago) that she has got really bad cataracts in both eyes. She has just seen the optician and can nolonger drive. Have booked a private appointment to see a consultant. She is not a bus person and has never been a walker (despite the COPD). She lives about an hour from me.

She has an (unreliable) cleaner (who apparently won't take extra work on - like ironing etc - although mum refuses to ask).

I have now suggested that she has someone in a couple of times a week (in light of deteriorating COPD, terrible eyesight and inability to drive) to help with washing, ironing. bins, changing beds, and taking her shopping etc (also think it might be a bit of regular companionship), but she doesn't want to. Money is not an issue. Basically she has two modes: "I'm fine" and "dialling an ambulance". I want to help her find a happy medium (that helps keep her out of hospital).

I am feeling very lost and helpless and stressed. I know that she is very unhappy and has had a rough time, but just can't get her to help herself or accept help.

We travel quite a bit and it is always stressful going away. This last time she was admitted to hospital we were away. I have asked her to name a second "next of kin" (in case someone urgently needs to be contacted when we are uncontactable), but she is fighting that too.

Any suggestions/experience much appreciated. I feel useless and shit.

fabulousathome Fri 03-Mar-17 08:23:57

That sounds v difficult. Do you have a sensible friend or relative who would be willing step in and help if you are uncontactable? Perhaps you could pay them every time you are away so that they are on call. You do not need to tell your Mum that they are paid to be contactable.

Are you traveling for fun or work? If fun then just go to places that are easier to come home from such as your own country. Many people have to do this for many years (like us). It's depressing.

thesandwich Sun 05-Mar-17 08:42:55

This sounds so hard. Is there anyone she would listen to? DM will do anything suggested by a man in a uniform.... policeman, fireman( to install care alarm) solicitor etc....... but not me.
Is it worth contacting age uk? And it is really hard but it sounds like she has capacity and is making her own choices while in sound mind- sorry.
Please look after yourself and your family.

IadoreEfteling Wed 08-Mar-17 19:28:01

"I'm fine" and "dialling an ambulance"

Op no offer of advice except deep commiseration, I am in same situation. Pig headed fool on my side - who has refused and put off all proper plans and is in denial about his current condition which is severe mobility issues - ie can't get up or down stairs, can't bed down at all etc, and now cant clean himself or his flat. Its so stressful, what ever I am doing I have this enormous worry on me and yet - in this time DH sweet 90 year old granny has sold her house and moved into assisted living.

IadoreEfteling Wed 08-Mar-17 19:28:58

thesandwich Sun 05-Mar-17 08:42:55

Made me laugh, my DM was the same! why are they so mistrustful!!

thesandwich Wed 08-Mar-17 22:04:51

Glad I made you smile! It is hard- so whatever works......

AhAgain Sat 11-Mar-17 17:40:12

Thank you very much. Just typed along reply (on my phone) and lost it. So will type again and post on several parts (so don't loose it again...).

Have spoken to a couple of mum's cousins and they are helping out - not really physically (they aren't close by), but by talking to her (sense and support). One has also offered to act as "next of kin" whilst I am out of the country.

I travel (long haul) because we have other family (some of them very elderly) spread around the globe - so mainly visiting them. I would not travel if mum was acutely ill, but it is continued chronic illness: I don't want to defer travel indefinitely because of possible flair ups.

I like the "age concern" suggestion - she would kill me if I suggested it: "they are for OLD people you know!" (Mum is only 78). This is the problem: she considers support organisations Ike that are always for people older/sicker than her. She has been through two (unrelated) lots of cancer. Both times I have tried very hard to encourage her to get support and help. She wouldn't do. She was miserable, depressed and lonely, but she wouldn't accept support from people. I did what I could, but it wasn't enough.

AhAgain Sat 11-Mar-17 17:47:12

LadoreEfteling, you have my sympathies. I could imagine my mum following down that path. She is fiercely independent and insists on battling on without help, but is miserable and depressed too. I can't help but think if she accepted some help, that she would feel better. It isn't financial: she is comfortable and can afford help.

I just wish that DM was the "sweet happy little old lady", but she isn't. She has had a rough time (health wise), but some of it is definitely self inflicted (and continues to be). There are so many things that could be done to make her life easier, but she is determined to do it all herself, until she can't (then it is an ambulance).

AhAgain Sat 11-Mar-17 17:52:02

More bad news - with regards to the cataracts. The cataract specialist believes that there is more going on (possibly wet macular degeneration). He has cautioned her that she may not be able to drive again and has referred her to a "whole eye" specialist for further assessment. In some ways her not driving again would be good (not convinced that she has been the best driver for years, regardless of eyesight), but the effect on her independence woukd be massive. Would definitely make me want her to move closer (since it would always be me visiting her). If her eyesight is really degenerating, then that could have very significant implications on her independence sad

thesandwich Sat 11-Mar-17 22:00:20

So sorry again. This sounds tough but could be an opportunity to get help. There are some good carers out there who could help out... please think hard about moving your DM closer as she will become completely dependent on you, and you will have to get care in place so you can travel. Good luck

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