Feeling a bit down and helpless

[Bay Tree]

My husband was diagnosed with MCI a year ago and although quite independent and active, has deteriorated. This resulted in a second referral to the memory clinic and this week a diagnosis of Alzheimer's. He goes to see the consultant next week to discuss medication. It hit us both hard even though it was expected. But in one way, I felt relieved to have a diagnosis. What we both find distressing is his inability to find his way around our home of 8 years - always going to the wrong room and taking up a lot of emotional energy. Signs haven't helped. Then this week something that hasn't happened before. While I was asleep, he got dressed and left the house. He had confused times and set off for a dentist's appointment at 1am when it was 1pm. He managed to get a fair distance on the last buses of the day but thanks to the kindness of the bus driver he made it back closer to home and the police found him and brought him home. When he got in, he didn't recognise our lounge for about half an hour but he was cheerful if a bit on the cold side! I'm not sure if it's just a blip for now or will happen again soon - I know it can be a feature of dementia. It makes me feel so sad - for me and for him and It seems that little by little our 'normal' world is being washed away and what's left doesn't seem to have a lot going for it. I'm not sure if I'm asking something or just saying how I feel. I know from other posts, my problems to date aren't awful but I'm feeling we aren't a Mr and Mrs anymore but a man with dementia and his carer.

 

[Bettysue]

The night time wandering is a significant moment. When my partner did this for the first time I was very surprised as I had not realised how badly confused he was. It’s a wake up call when someone gets up and dressed at 1am,and in my case, goes out in pouring rain and high winds in February and walks 3or4 miles along a main road with no pavements. I assume you will now have to make sure he cannot ‘escape’ again. I made sure from that point on that I had all the keys in my pocket.
You’re right in that you’re probably beginning to live in an ‘alternative reality’ where things happen that you could never envisage. I hope that medication may offer some help but it’s important to get POA organised if you haven’t already done that. Also thinking about claiming Attendance Allowance because if you’re having to supervise your husband to some degree you may be eligible.
Because of my partner’s wandering police made a referral to Social Work which was a godsend as it allowed him to access support at a day centre and also a babysitter for 4 hours a week. I’m in Scotland and all of that was free.

 

[Bay Tree]

The night time wandering is a significant moment. When my partner did this for the first time I was very surprised as I had not realised how badly confused he was. It’s a wake up call when someone gets up and dressed at 1am,and in my case, goes out in pouring rain and high winds in February and walks 3or4 miles along a main road with no pavements. I assume you will now have to make sure he cannot ‘escape’ again. I made sure from that point on that I had all the keys in my pocket.
You’re right in that you’re probably beginning to live in an ‘alternative reality’ where things happen that you could never envisage. I hope that medication may offer some help but it’s important to get POA organised if you haven’t already done that. Also thinking about claiming Attendance Allowance because if you’re having to supervise your husband to some degree you may be eligible.
Because of my partner’s wandering police made a referral to Social Work which was a godsend as it allowed him to access support at a day centre and also a babysitter for 4 hours a week. I’m in Scotland and all of that was free.

Thank you for the reply. It must have been frightening for you when your partner did this for the first time, knowing he was walking on the main road in awful weather. Yes, I've now found a safe place for the keys. Have got POA in place but haven't applied for attendance allowance, but will be doing that next. The police were very kind and took our details and a photograph and mentioned the Herbert protocol.

 

[Bettysue]

I’m not sure how it works where you are but here the police automatically refer a serious wandering incident to social work as a safeguarding issue. It opened several doors for us which might not have happened had the wandering not happened. A double edged sword!!

 

[Lin B]

I have the same issue with my OH not recognising our house in the evenings which I believe is sun downing. He goes into the kitchen looking for the stairs which are at the opposite end of the house, and seems to think we we are in a new place each night. He says he needs the loo and walks into the kitchen. Then I get endless questions about where the car is parked, will we go home in the car in the morning and what order do we do things in. Thankfully he hasn't wandered outside of the house yet, but he did put his big coat on to walk upstairs to bed last night. I have tried everything I can think of. I have signs everywhere, I try to stay patient and he is on a lot of meds. Nothing seems to make much difference now although the Trazadone did at first. I can only offer a virtual hug and tons of empathy. It is emotionally wearing. Even the dog looks at me some evenings as if to say what the hell is going on!

 

[scotlass]

yes do apply for attendance allowance...and if you can get someone to help you fill in the form that will help
as other folk have said on the forms, you have to make the care your o h needs the worst senario every time..everything he needs help with every day not just once or twice a week....how often and for how long does he get up through the night...and good luck , let us know how you get on x