Newbie- long distance carer

[primrose]

Hello everyone. Just joined up as I'm feeling in need of some support. Mum mum is 84 and is disabled with COPD and heart problems and lives 350 miles away, and I'm finding it a struggle trying to support her from so far away. She has carers in four times a day to help her, and is housebound but very emotionally dependant on me. Both myself and my sibling (who lives a similar distance away from her) get up to see her as often as we can- one of us goes to see her every 4-6 weeks. But it's so difficult trying to get things sorted from such a distance. She has a social worker now and she is giving a lot of practical help, which is great. But almost every evening mum rings me, she's getting quite depressed but doesn't want any counselling type help, so relies on me for most of her emotional support. She's a very negative old lady, critical of everyone and everything and rarely has anything positive to say about anyone and I'm finding it a struggle as her future is a slow spiral into increasing ill health. Last night she told me she didn't want to live any longer, I've emailed her social worker to see if she can get mum to accept some support with her emotional health. Is anyone else on this forum in a similar position, trying to support someone from a distance?

[susieq]

Hello Primrose and welcome to the forum

We do have some members caring from a distance and I'm sure some of them will along soon to welcome you and give advice I cared for Mum from a distance of a couple of miles (which was difficult enough) until her dementia got to the point where she needed 24/7 care and then I moved in with her for her last 3 years until she died back in 2012.

If your Mum was physically active and could get out and about before she became ill then her depression at being housebound is understandable - no easier to deal with, but understandable. Perhaps with the help of Mum's Social Worker you could find a local 'befriending' service and arrange for someone to visit Mum in a 'social' capacity once or twice a week?

[crocus]

I was hoping there might be some posts on this thread as I am going to be in the same position myself. Mum has a friend who pops in most days and takes her shopping etc and I check up with her about mum. ATM mum is OK at home, but I dont know what to do when she needs more help.

[Brindleboy123]

Primrose ....welcome to the forum! I am a former carer but have remained on the forum and have no intention of leaving! to be perfectly honest your post could have been written by me several years ago as I was in an almost identical situation.

I live in Spain and took over caring for my Mum with my sister (that's another story!) when Dad passed away. Amongst a long list of conditions, Mum suffered from COPD and Osteoperosis. I live in Spain and the arrangement was that I flew over to stay with Mum for a week every third week and the remainder of the time mum had carers coming in four times a day. Even though you are not physically there 100% of the time, emotionally it was draining and a constant battle with various departments and ensuring that medication meals and all other needs were met. I recognise so well also how your mum can pull on your heart strings with all the emotional blackmail! If you didn't know better you would think I did absolutely nothing at times!

The wish to die was also thrown around frequently to the point that one day I have to admit I sat down with Mum and told her how much I loved her and didn't want her to die but that if ending her life was really the only thing she wanted to do then that was her choice (my fingers crossed that this reverse psychology would work). Mum responded that perhaps we could both take pills, with me going first! I believe depression is common with COPD sufferers and it certainly was very apparent with my Mum.

COPD is an awful disease and it is terribly difficult watching your loved one become less and less able. If possible, I would suggest that you get in touch with your local hospice. It took some persuading in our case to get onto the books but once they had visited Mum their help and advice proved invaluable. The consultant and hospice nurse visited regularly and also talked to mum about her end of life wishes which resulted in a DNR form being completed. This was placed above her bed so if I was not there carers and ambulance would be aware. As the disease progressed Mum needed someone with her throughout the night and we were fortunate that this was organised via social services.

Following a hospital stay mum contracted MRSA and it was recommended that she went into a nursing home. It was upsetting and she so wanted to go home. My life, including my husband was in Spain and you can imagine the difficulty of trying to be in both places. I have to console myself now with the knowledge that I would have been unable to care alone for Mum and therefore being at home was not an option.

I recommend that you try to build your relationship with the social work team. Their influence can be so important when you are so far away and you have difficulties with care agencies.

Mum was also very negative and in fact I believe it was possible that in my Mums case there may well have been some narcissistic tendencies. I think you have to really sit down and consider how much input you want to provide yourself in the future and make plans accordingly. Sadly, COPD patients are going to deteriorate and you need to be prepared for this.

I think it is common for many former carers to question whether they did enough and I am no exception. this forum helped me through a very difficult period in my life and I have no doubt that you will find support too. Please let me know if I can help further!

Bell x

[Bluebird]

hello and welcome

[bowlingbun]

Just a note to say welcome to the forum. The negativity of carees is a difficult problem for many of us caring, especially elderly parents. After all, they can look back, and miss all their loved ones who have passed away, and look at missed opportunities, and miss the certainties of their young lives, but what can they look forward to when they are housebound and disabled? My mum has just moved into a nursing home after months in hospital, and years of ill health, operations, ambulance calls etc. etc. At some point you and your mum may have to admit that the current situation is simply not working. It may well be triggered by some crisis. A forum member called Juggler supported her dad to move into residential care about a year ago, and she had some lovely times with dad, before he passed away. Freed from the incessant stream of jobs to do etc etc they could become just father and daughter. This gave me the courage to say enough was enough. I'm so glad I did, this week mum had a mini stroke, the nursing home called the doctor, and he was confident that the home would be able to care for mum, whatever she needed. In the meantime, make sure you have considered arranging a Power of Attorney so that if mum was no longer able to manage her affairs, you could. Changes in the system mean that it is vital to arrange this well in advance of needing it, as currently registration is taking about three months.

[Martij]

Hi Primrose
I am new too so thought I would say hi. I live with my Mum who has moderate Alzheimer's but work full time. Could you speak with the social worker mine managed to sort a service called adults supporting adults they either sit with mum or take her out for 6 hours a week and provide mum with someone independent of me they are good and despite her memory her face lights up and she remembers her supporters name when she visits and social services have paid for this . Also many care companies do a sitting service I am unsure how mobile your mum is would she manage a day centre most of them offer specialist transport to pick people up and drop them off. I am just about to try mum with one again this week and have gone for a more busy and social one in the hope she enjoys it. Hope you get some help.