Caring at home

[eurolynch]

My Mum is not settling at all in her extra care sheltered housing. Although early days, 5 months, I am breaking my heart leaving her each night. I feel that possibly having her with me would be easier in this sense. Does anybody have experience of taking a loved one home? Xx

[easterncedar]

Look back at your post from several months ago; you were miserable and on the verge of breaking down trying to take care of your mother on your own. I think you need to take some steps back, if I may be so bold as to give advice. Maybe don't visit your mother every day. It's at least possible that your presence is keeping her from settling into her new place.

Take care of yourself.

[eurolynch in reply to easterncedar]

Thank you....I am trying but the pain is worse than the visit sometimes x

[easterncedar in reply to eurolynch]

It's quite cruel the way the disease can warp folks' personalities. You wouldn't be trying so hard if she hadn't raised you to be such a caring person, and now you are left negotiating this minefield. I am so sorry!

[AJK2001]

I can relate to what you are going through, my husband & I moved my Mum from London to "Up North" into sheltered housing and it was a huge wrench for her, leaving her home of more than 50 years and all her friends. Now we think we should have made her do it earlier as she didn't have the time to make good friends at the housing complex before PSP got too much in the way. Do they have any social activities at the complex or a dining room or anything, so that you could take her meet other people there? Mum used to go down to lunch a few times a week until she needed blended food & feeding and even though I don't think she joined in the conversation she listened and took in the news, so felt part of the place. Do the staff have time to talk to her or take her down to the lounge? Could you pay for extra house keeping assistance and just have them spend time with your Mum to give you a break and giver her a chance to form her own friendships. Is there a fellow resident who would come & chat with your Mum? There is a very kind lady who delivers the weekly newsletter who always pops in and delivers the newsletter personally to Mum. Sometimes it's getting the word out that your Mum would be open to visitors. Have you tried getting a "buddy" through a charity for your Mum. Mine has a gentleman from Independent Age visit once a week and Mum really looks forward to it (the lippy even comes out) as they talk about life and not symptons, he's interested in her not her condition. Is there a hairdresser that could visit, they are normally good at chatting away. All these little things add up and help create a new life for someone. 5 months isn't long for someone to settle in when it's such a big life change, when Mum moved they said 12 -18 months was what it usually took.

I too have walked away feeling awful about leaving Mum, when she asked me to stay or just looks so lost and lonely, but I know that if she was the lady she had been, she would be telling me, that she, has had her life and I need to live mine.

It's a very big step to have her move in with you. Is your house suitable? Would you ever get any break or respite?

Hope this may help you clarify your thoughts a little.

Hugs

[HilsandR in reply to AJK2001]

Spot on AJK2001 - a really helpful post that I hope will give eurolynch some light at the end of her very dark tunnel. HilsandR

[Hidden in reply to AJK2001]

Yes, l could not have said it better.

[HilsandR]

eurolynch, AJK 2001 has just about covered all the points I would have raised, a very helpful post for you I hope. You can feel totally alone in this big world trying to muddle through daily when trying to make some sense of coping with these hideous diseases. One thing I would add though, are YOU happy with the care that your mum is receiving at the facility she is in, and could this be a factor as to why she isn't settling as you might have hoped. Would she be able to voice any problems though I guess that if you are going in each day you will have identified anything that was not quite right and that's probably more important to see for yourself in conjunction with what your mum might say than from her words alone. Once you are clear on that then you can get down to addressing how to make life better for your mum and how you can deal with things to make yourself emotionally stronger. These neurological illnesses can give the sufferer a complete personality change and the mum you see now may be miles apart from the mum you once knew, and it will get worse, sadly. In order for us to survive we do have to try to detach ourselves from their traits that emotionally drain us, easier said than done I might add. You are obviously a very caring person and your mum, although she may not always show it, loves you dearly and appreciates all you are doing for her. We don't know what's going on in their heads most of the time but confusion and fear plays a big part for sure. Hopefully you can pick up on some of AJK2001 suggestions - do come back at some point and let us know how you get on. There are no easy answers, and every carer will find their own way of coping, but anything is worth trying. Heartfelt good wishes to you and your mum. HilsandR

[Hidden]

Hi Eurolynch, l tried to answer your post before... but l could not find the words... because l have been in your heartbreaking shoes (like so many others on this forum ). I know l did the best l could for mom as we muddled through the puddles & l believe/hope she knew that was true...

Now l will speak to you as a mom (not as a daughter)... l have lived my life & never want my children to be put in the position of being my carer! I know they will do their best to muddle through the puddles as l did with my mom... and l know l will not be an easy challenge for them... as my mom was never easy (hereditary l think)! I would always put lavender or rose scented lotion on mom's feet & hands before ending a visit... as l talked softly to her l could feel her relax a little & l would leave. It became ritual for us. Finding ways to cope will be different for everyone. (There were also times l rolled up the windows in my car & screamed on the drive home.) Please be kind to yourself. Sending gentle hugs to you & mom... Granni B

[Elaine1969]

Hi, i had my husband put in to nursing care just over a year ago hard i know the pain when leaving was upsetting in the end i cut the daily visits down to maybe every other day then it gives you a little me / family time dont be to hard on yourself she will have bad days and better days as hard as it was it was a good plan in the end big hugs xxx

[eurolynch]

Thank you all x