Things not to say to me - rant warning!

[Spamar]

Then I think it’s time the family stepped in to help. Your pwd may/ may not notice or work out what’s happening, or where he is.
Sorry, I haven’t read your back story, but if you’re cracking, your needs are more important. If you’re use not fit, you u won’t be able to care. What will your family do then?

There is absolutely nothing selfish or uncaring about putting someone in care. If anybody tells you that, suggest they do your job for a week. Then ask again. Two days looking after their father certainly sorted out two of my stepchildren!

How about respite? I was advised to place OH into respite for 2 weeks. I certainly benefitted. OH didn’t seem to mind. He knew where he was, but, because he wanted the best for me, he didn’t object.

 

[mickeyplum]

Thankyou for your time. I can’t go to the doctors or talk to him on the phone, my hus band is always there. We’ve been referred to social services but apparently this can take weeks.i know I’m weak, I know others manage, but I dread getting up each day. I can’t put him in a home, I promised him that I never would do that. I know I’m probably making myself I’ll again, I had a breakdown several years back, but I can’t bear the thought of deserting him. I no longer sleep, I listen for his every move. He fell and strained his chest muscles and is in such pain.my family occasionally drop in and think he’s looking well, or not too bad. They don’t know of the hours of loneliness and the longing to talk to someone. I don’t feel like a wife any more, and sometimes he doesn’t even know that I am..xx

 

[mickeyplum]

My husband is not as far down the line yet but I do feel for you. My worried family finally over-ruled my decision not to see a counsellor for anxiety and depression. I saw a private one for one session which didn't work out and I got nothing from it.
Eventually I was referred by my GP. I had to wait 6 months for an NHS appointment so it's important to get on the list now, before you completely break down. It's very important to 'click' with your counsellor, which thankfully I did with the wonderful NHS woman. She was excellent and I looked forward to the weekly sessions when I could cry and talk about things I wouldn't want my family to worry about.
I told my husband I was seeing someone about my insomnia that's all, and he pestered to come every time. I told him firmly, no, there was nowhere for him to wait and that did the trick.

 

[sqeaker]

’How are things at home?/ how is pwd?’ Said at the start of every conversation I‘ve had this week. I get that people are being nice, possibly even concerned, but just for once I’d like to talk about something (anything!) else.

‘I admire how well you are coping’. Said by someone who has no idea how I’m coping, but it makes them feel better about not offering any help.

‘He’s still the same person’ said by people who didn’t know him before and don’t understand how unreasonable and controlling this illness is. Also particularly unhelpful said to our children, who feel rather differently.

‘Living well with dementia’. Well he might be, but the children and me are not ‘living well’, we are surviving.

Anyone else?

I know just how you feel, if anyone else says to be well you know its not him yes I know that but it still hurts and I am too surviving .And too they say to me you are doing such a good job I dont know how you do it, well I do it because he is my husband and they too dont know what its like when the front door is shut, and days when I cant do right.
im with you keep talking here il answer.

 

[Manc70]

Re things not to say - I was really pleased to see our local supermarket had a dementia awareness checkout with trained cashiers (not that my husband could shop on his own any more but I thought if he came with me maybe it would all be a bit calmer getting the goods packed) - I used the said checkout and commented to the lady that I had seen her picture in the local rag regarding this new innovation and told her my husband had Alzheimer’s and what a welcome idea it was, her reply was to tell me what a dreadful thing it was to lose the person you are with while they are actually still alive!!! I was too shocked to shoot her down and it took everything I had to pack my shopping and pay my bill before going to the car and breaking down. Maybe she meant well but I think she needs a tad more training!
Sorry for going on but yesterday a ‘friend’ told me on the phone about someone she knows whose husband has gone ‘doo lally tap’. She is fond of my husband but the thought that she may describe him to others in this way breaks my heart. Am I being too sensitive?

 

[kindred]

Re things not to say - I was really pleased to see our local supermarket had a dementia awareness checkout with trained cashiers (not that my husband could shop on his own any more but I thought if he came with me maybe it would all be a bit calmer getting the goods packed) - I used the said checkout and commented to the lady that I had seen her picture in the local rag regarding this new innovation and told her my husband had Alzheimer’s and what a welcome idea it was, her reply was to tell me what a dreadful thing it was to lose the person you are with while they are actually still alive!!! I was too shocked to shoot her down and it took everything I had to pack my shopping and pay my bill before going to the car and breaking down. Maybe she meant well but I think she needs a tad more training!
Sorry for going on but yesterday a ‘friend’ told me on the phone about someone she knows whose husband has gone ‘doo lally tap’. She is fond of my husband but the thought that she may describe him to others in this way breaks my heart. Am I being too sensitive?

No, not at all too sensitive, I am so sorry. Got to stage with me when I was afraid to go out with husband, people would cross the road to say stuff like, he's very thin, are you feeding him properly? I am sure I became the road's person to pity. I do sympathise. And this is supposed to be dementia friendly!! Dear oh dear. All fellow feeling, sweetheart. Thank goodness for TP.
love and best, Kindred.xx

 

[Manc70]

No, not at all too sensitive, I am so sorry. Got to stage with me when I was afraid to go out with husband, people would cross the road to say stuff like, he's very thin, are you feeding him properly? I am sure I became the road's person to pity. I do sympathise. And this is supposed to be dementia friendly!! Dear oh dear. All fellow feeling, sweetheart. Thank goodness for TP.
love and best, Kindred.xx

Thank you kindred, it never ceases to amaze me the things some people come out with. The mix of empathy and understanding is what we need but I can’t stand the pity, is it because pity feels insincere sometimes. As you say thank goodness for TP, already I don’t know how I’d cope without it. Have a lovely visit with your husband today and as always I look forward to reading your next post. My OH managed an hour up before going back to bed exhausted but I hope to get him out gardening for a while later while the weather is cold but nice. With love S xx

 

[kindred]

Thank you kindred, it never ceases to amaze me the things some people come out with. The mix of empathy and understanding is what we need but I can’t stand the pity, is it because pity feels insincere sometimes. As you say thank goodness for TP, already I don’t know how I’d cope without it. Have a lovely visit with your husband today and as always I look forward to reading your next post. My OH managed an hour up before going back to bed exhausted but I hope to get him out gardening for a while later while the weather is cold but nice. With love S xx

Thank you so much, just off. Pity sucks. Hope gardening works well, nice day here!
love and best, Gxx