I really don’t know which way to turn. I feel like a ‘moaning Minnie’ all the time, but I have no one to discuss this with. In my working life I was a senior manager and now I’m a gibbering wreck! I can’t get out to view care homes, so I can’t make an objective decision. In my mind, I would be letting him down. I feel it’s my responsibility to see this through and do everything I can for him although I find this harder and harder. He is physically reasonably well, but his dementia is worsening by the week. You certainly shouldn’t feel bad about writing as you did. It’s all very well for people to say it’s for the best, but your post hit a chord with me, because I feel much the same as you.
The well travelled road.
- Thread starter Topsy Tiger
- Start date
You are not a “moaning Minnie” at all, @Vitesse but a conflicted woman doing her best in increasingly difficult circumstances. Taking decisions like this on your own is impossible. You said earlier that SS have recommended respite - they know your husband and they know you and your situation. Can you just have a full and frank discussion with them about your feelings and hesitation? No-one can tell you what to do but talking to as many people as you can help you make sense of your concerns.
I would be a hypocrite if I didn’t acknowledge your sense of letting your husband down. I feel like that. I think I always will. Mum’s dementia worsened appreciably during the autumn and she, like your husband, is fit for her age, so I was staring down the barrel of another four or five years of this, but not this - something unimaginably worse. I had resisted calls from family members for her to go into care for about three years (thank goodness I did as the money would never have lasted if we’d have pulled the trigger then) but the conversation wouldn’t go away. Chip, chip, chip away at my resolve. Drip, drip, drip of the benefits to her and me of this solution. Finally I thought, “if we leave it much longer she won’t have a hope of settling in a strange environment” and “she’s bored and lonely and can’t understand why she’s not like she used to be, perhaps having company 24/7 with people just like her will assuage her anxiety”. Was I actually convinced or was I convincing myself?
The final decision came because the CH we had selected and had talked to for over a year, called me to say that we were the top of the list and a room would become available in early October. Brother and his wife were going for a week’s holiday in October so we discussed it and said can we get back to you in a week? Fine, they said, we have a respite client who will go in there and we’ll see where we are when you get back. Mid-October came, we contacted the CH to find that the respite resident had become a permanent resident, they had full occupancy but would keep in touch. Suddenly it became Hobson’s Choice this end, I would have to carry on no matter what. I literally hadn’t had a break for two years so slumped at the thought. Then, suddenly a room became available as someone had to go to a nursing home. We went to look at the actual room, looked at each other and said we’d take it. The reservations I’d had for those three years came flooding back then but didn’t quite immerse the shock I’d had of thinking we were stuck in the rut. So we did it, despite those rivers of doubt flooding my mind, we did it. And here we are. You’ve read the rest.
This is my story. It doesn’t mean it will be your story.
It is the most momentous decision you will have to take probably for the rest of your life and I wish I could be of more help. Keep posting or private message me if you think that would help. I wish you what you wish yourself.
It was four weeks ago today when Mum went into the CH. How have we all got on?
There have been some ups and downs, which is natural. Mostly she looks clean and smart, she not only has had showers but also a bath, which surprised and pleased me. On occasions she refuses help and reverts to her 2/3 pairs of trousers, no bra and shoes not done up. Quite often with no hearing aids in. On these days, the carers tell me that she can be quite forceful in letting them know verbally that she doesn’t want help and they don’t want to make the situation worse by making her. The jury is still out with me on this approach - just go back after an hour and she will be more compliant, in my experience. If she is like that on days that I visit, I get her sorted out, just like the old days and it makes me wonder why we are paying £1200 per week when obviously I can look after her better - but of course that is not the case. She did a huge amount of wandering the corridors at first, so much so that they have put a pressure mat by her bed so that they can be alerted when she is doing that during the night. Just recently, she seems to be sleeping a bit better but it can be variable. Nighttime wandering is certainly something I don’t miss.
She mostly seems to be mixing and getting involved in activities especially any those that involve music. When we visit she is often talking to other residents but she tells us she has no idea who any of them are, so I don’t think she remembers them, it must be like speaking to someone for the first time every time. We have been told, however, that at night, Mum and another resident, go round and into everyone’s room to make sure they are okay to go to bed. One of the assistant care managers told me that she thought of them as her little helpers when she was on nights. I’m not quite sure to make of this behaviour but am erring on the side of it being positive. It doesn’t stop her asking me if I “know her/him” if they wave or speak to us during a visit though.
I was worried at the outset about people going into Mum’s room and taking her things, but I have found other people’s belongings in her room and once she was even wearing someone else’s shoes - apparently she had just bought them, weren’t they nice? They were exchanged and returned much to her chagrin, but, as I told her, they were much too nice for everyday wear!
She doesn’t ask to go home much but she does talk about going for a walk to see her Mum. She asks us where we live and I’ve tried to avoid saying the name of our village but once it slipped out and she didn’t respond negatively. I think she thinks the “hotel” is actually in the village. She may not ask to go home but she pleads with us to stay, or go back in the evening, which is quite difficult to deal with. She eats well and seems resigned to being there, so all-in-all, for four weeks, it could have been a lot worse.
Mum’s old companion and I still find the whole thing difficult, both of us dread going to see Mum in that environment but equally find it difficult to leave her there. The feelings of guilt and regret are beginning to abate but not sure if they’ll go entirely. I still have times when I want to bring her home but then we would have been through all of this for nothing - not that I could go back to being full time carer again.
She hasn’t been away from the CH in those four weeks apart from a quick trip to the audiologist. The senior carers are saying she needs some variety and are encouraging us to have her at my brother’s for Christmas lunch, so we are going to try that. That’s a week today - another Wednesday of stress but, I hope, of opportunity and memories as well.
There have been some ups and downs, which is natural. Mostly she looks clean and smart, she not only has had showers but also a bath, which surprised and pleased me. On occasions she refuses help and reverts to her 2/3 pairs of trousers, no bra and shoes not done up. Quite often with no hearing aids in. On these days, the carers tell me that she can be quite forceful in letting them know verbally that she doesn’t want help and they don’t want to make the situation worse by making her. The jury is still out with me on this approach - just go back after an hour and she will be more compliant, in my experience. If she is like that on days that I visit, I get her sorted out, just like the old days and it makes me wonder why we are paying £1200 per week when obviously I can look after her better - but of course that is not the case. She did a huge amount of wandering the corridors at first, so much so that they have put a pressure mat by her bed so that they can be alerted when she is doing that during the night. Just recently, she seems to be sleeping a bit better but it can be variable. Nighttime wandering is certainly something I don’t miss.
She mostly seems to be mixing and getting involved in activities especially any those that involve music. When we visit she is often talking to other residents but she tells us she has no idea who any of them are, so I don’t think she remembers them, it must be like speaking to someone for the first time every time. We have been told, however, that at night, Mum and another resident, go round and into everyone’s room to make sure they are okay to go to bed. One of the assistant care managers told me that she thought of them as her little helpers when she was on nights. I’m not quite sure to make of this behaviour but am erring on the side of it being positive. It doesn’t stop her asking me if I “know her/him” if they wave or speak to us during a visit though.
I was worried at the outset about people going into Mum’s room and taking her things, but I have found other people’s belongings in her room and once she was even wearing someone else’s shoes - apparently she had just bought them, weren’t they nice? They were exchanged and returned much to her chagrin, but, as I told her, they were much too nice for everyday wear!
She doesn’t ask to go home much but she does talk about going for a walk to see her Mum. She asks us where we live and I’ve tried to avoid saying the name of our village but once it slipped out and she didn’t respond negatively. I think she thinks the “hotel” is actually in the village. She may not ask to go home but she pleads with us to stay, or go back in the evening, which is quite difficult to deal with. She eats well and seems resigned to being there, so all-in-all, for four weeks, it could have been a lot worse.
Mum’s old companion and I still find the whole thing difficult, both of us dread going to see Mum in that environment but equally find it difficult to leave her there. The feelings of guilt and regret are beginning to abate but not sure if they’ll go entirely. I still have times when I want to bring her home but then we would have been through all of this for nothing - not that I could go back to being full time carer again.
She hasn’t been away from the CH in those four weeks apart from a quick trip to the audiologist. The senior carers are saying she needs some variety and are encouraging us to have her at my brother’s for Christmas lunch, so we are going to try that. That’s a week today - another Wednesday of stress but, I hope, of opportunity and memories as well.
On reading your post it does seem that the last 4 weeks have included both ups and downs but I was left with a generally positive note to your post. I hope the Christmas visit to your brothers does indeed go well and you are left with some more good memories.
