This is the best it will be....

[Bettysue]

I keep having this thought in my head and I feel as if I’m hitting a barrier right now. I’ve managed to be fairly upbeat till now but I can’t bear the thought of living like this for much longer.
My partner is physically quite well and mobile. He has can no longer express himself at all and I reckon he has little understanding of what is said to him. He has urinary incontinence. He sleeps a great deal of the day. We might manage a short walk in the morning but then he dozes through the afternoon.I really have to do everything for him. I am lucky to have help with showering and he also goes to day care once a week.
I feel that my tolerance level is very low, I feel angry and frustrated a lot of the time. I feel guilty that I can’t do much to make things any better for him. I’m in this endless loop of resentment. I just feel like I’ve had enough and he is suffering because of this.
I’m sure these feelings are common but I can’t help thinking he deserves better than this grumpy bad tempered woman looking after him.

 

[Duggies-girl]

Hi @Bettysue your feelings are normal. You are doing the best that you can and that is all that you can do. Yes the thought of living like this for much longer is something that is hard to bear and it is impossible to say how long it will be which must be the one question that we all wished to know because it would be so much easier if there was a time frame. The never ending cycle of frustration and anger does you no good at all, you need a break.

I think perhaps you need some more help or maybe it is time to consider a care home which is not the evil option that many think it is. You are bound to get more answers soon and I am sorry that I was not much more help but don't beat yourself up with guilt because it is not your fault and you are bound to get grumpy.

 

[blackmortimer]

I keep having this thought in my head and I feel as if I’m hitting a barrier right now. I’ve managed to be fairly upbeat till now but I can’t bear the thought of living like this for much longer.
My partner is physically quite well and mobile. He has can no longer express himself at all and I reckon he has little understanding of what is said to him. He has urinary incontinence. He sleeps a great deal of the day. We might manage a short walk in the morning but then he dozes through the afternoon.I really have to do everything for him. I am lucky to have help with showering and he also goes to day care once a week.
I feel that my tolerance level is very low, I feel angry and frustrated a lot of the time. I feel guilty that I can’t do much to make things any better for him. I’m in this endless loop of resentment. I just feel like I’ve had enough and he is suffering because of this.
I’m sure these feelings are common but I can’t help thinking he deserves better than this grumpy bad tempered woman looking after him.

I know exactly how you feel, @Bettysue . I was in the same position with my wife who has Lewy body dementia. I had to care for her on my own because of her paranoia about strangers coming into the house - even the plumber was a source of suspicion - let alone other people helping with "personal" care. I did my best for about 5 years but I always found it an uphill struggle and like you felt angry and frustrated and like you with a good helping of guilt for not being better at it all than I was. My children were leaning on me to try a care home but I resisted for all the usual reasons.

Eventually, last June the decision was made for me, She became increasingly more difficult and potentially violent to the point when I had to call an ambulance. The paramedics were brilliant, they took her to hospital where she was assessed, referred to a mental health unit and stabilised. They were also brilliant - far more skilled and patient than I could ever be and their care for the carers was also first class. After about 5 months she was discharged to a nursing home which was recommended and I and the children researched thoroughly and she has settled in well.

I don't know if any of this helps you but maybe you can see parallels. Maybe it's time for you to consider a home for your partner - if it goes well it's not necessarily as scary as we all tend to think and you mustn't feel guilty because you may be doing a favour by letting the professionals take over.

God bless