Mother newly diagnosed

[Rachel69]

My mother has recently been diagnosed with Alzheimer’s, she’s had a CT scan to confirm this. She lives on her own and is coping fairly well (so we think) but lately she’s been having hallucinations and keeps forgetting my dad has died.
I’m the only daughter of our family to live closest, my brother lives up north and my sister lives in Kent and doesn’t work. I work nearly full time and the late night phone calls are becoming a problem. She keeps saying she doesn’t want to be on her own and she’s terrified as she thinks the gate posts are men watching her house. We don’t want to put her into care but we’re at a loss of what to do. I’ve started to suffer from anxiety as I sit at home at night and wait for the phone calls. I’d be grateful for any advice. Thank you

 

[Hil76]

Hi Rachel69, I’m so sorry about your mum, it’s a very difficult thing to come to terms with, how close to your mum do you live? Would it be possible for you to stay with her? At least for the short term if you could stay with her overnight you’d know you weren’t going to get any late night calls. How far advanced is she? Hallucinations generally don’t happen until the later stages, if at all. Also, just because you live closest, you have siblings that have equal responsibility, don’t take this on alone, you will need each other’s support through this.

 

[Rachel69]

Hi Rachel69, I’m so sorry about your mum, it’s a very difficult thing to come to terms with, how close to your mum do you live? Would it be possible for you to stay with her? At least for the short term if you could stay with her overnight you’d know you weren’t going to get any late night calls. How far advanced is she? Hallucinations generally don’t happen until the later stages, if at all. Also, just because you live closest, you have siblings that have equal responsibility, don’t take this on alone, you will need each other’s support through this.

Hi Rachel69, I’m so sorry about your mum, it’s a very difficult thing to come to terms with, how close to your mum do you live? Would it be possible for you to stay with her? At least for the short term if you could stay with her overnight you’d know you weren’t going to get any late night calls. How far advanced is she? Hallucinations generally don’t happen until the later stages, if at all. Also, just because you live closest, you have siblings that have equal responsibility, don’t take this on alone, you will need each other’s support through this.

 

[theunknown]

Hello Rachel. I know all about those hallucinations. My mum's were also centred around horrible things happening outside her house. Awful as it is to contemplate having to put our family member in a care home, it may be that the outcome is taken out of your hands. If it's decided by the professionals that they can no longer live in their own home, even with all-round care (this is what happened in my mum's case) it's the best outcome for your parent in order for them to be safe and have day round care. It sounds like whatever you decide to do it will be in your mum's interests, not yours. As for your siblings, theoretical responsibility or not, you can only rely on yourself to do what you feel's right.

 

[Rachel69]

I’m 10 mins drive away but I have a family and I work, i do stay over occasionally when she’s really bad although I don’t know how to handle the hallucinations. My sister comes over once a week during the day and brings mum shopping but she never stays over. I went through years with my dad often having to go to hospital late at night and I don’t think I can do it again. On the plus side mum does cope well although I don’t think she eats properly, pie and waffles for dinner she’s told me twice last week.

 

[Rachel69]

Hello Rachel. I know all about those hallucinations. My mum's were also centred around horrible things happening outside her house. Awful as it is to contemplate having to put our family member in a care home, it may be that the outcome is taken out of your hands. If it's decided by the professionals that they can no longer live in their own home, even with all-round care (this is what happened in my mum's case) it's the best outcome for your parent in order for them to be safe and have day round care. It sounds like whatever you decide to do it will be in your mum's interests, not yours. As for your siblings, theoretical responsibility or not, you can only rely on yourself to do what you feel's right.

 

[Shedrech]

Hello, @Rachel69
A warm welcome to DTP

Unfortunately this isn't unusual behaviour

Are you confident that actually your mum is safe at night, if so don't feel that you have to answer the calls... maybe set times in your mind during which you will not answer... if possible add to the answerphone message something soothing and that you'll call your mum in the morning

Do have a chat with with your mum's GP as possibly some meds may help her settle and the GP needs to know about the hallucinations

Is there any way to disguise the posts, maybe cover them with foliage or paint in bright or camouflage colours

I wouldn't start staying over with her as she will simply begin to accept that and expect it and you need to live your own life

Have you contacted your Local Authority Adult Services for an assessment of your mum's care needs and a carer's assessment for yourself... it may be that some day care will help your mum or visits from a befriender and these may be offered in a care plan

Could your sister buy ready meals to microwave, some can even be heated from frozen, with a single portion pudding, even packed sandwiches so your mum has no preparation .. important to keep her eating, less important to insist on 'healthy' eating or home made food.. and maybe have cartons of drink, my dad quickly lost the idea of keeping hydrated

 

[Rachel69]

It’s so nice to talk to people and share, the hallucinations are the worst and they always occur about 10pm at night. I try to tell her they’ve gone now as if I say they aren’t there she gets so aggressive. The next day she can’t remember anything that happened the night before. I think she’d be better in sheltered housing as the house is 3 bedrooms and she keeps saying she doesn’t want to live on her own, I’ve not got the space to take her in.

 

[Rachel69]

Hello, @Rachel69
A warm welcome to DTP

Unfortunately this isn't unusual behaviour

Are you confident that actually your mum is safe at night, if so don't feel that you have to answer the calls... maybe set times in your mind during which you will not answer... if possible add to the answerphone message something soothing and that you'll call your mum in the morning

Do have a chat with with your mum's GP as possibly some meds may help her settle and the GP needs to know about the hallucinations

Is there any way to disguise the posts, maybe cover them with foliage or paint in bright or camouflage colours

I wouldn't start staying over with her as she will simply begin to accept that and expect it and you need to live your own life

Have you contacted your Local Authority Adult Services for an assessment of your mum's care needs and a carer's assessment for yourself... it may be that some day care will help your mum or visits from a befriender and these may be offered in a care plan

 

[Shedrech]

Hi again @Rachel69

To reply to your thread I'd suggest scrolling right to the bottom and adding your response to the empty text box

(rather than pressing the 'Reply to member' button)

 

[Rachel69]

Hi Shedrech, mum was under the local Dementia hub who did the tests and diagnosed her, we told them about the hallucinations and they would have told the doctor. Mum has now been signed off their books. She did have a nurse visit her as she hadn’t been taking her pills, she’s now going to have a blister pack.

Regarding a care plan, my mum is very independent and doesn’t think anything is wrong with her, how do you tell her she has Alzheimer’s when she forgets 10 mins later and she would object to carers coming in even though I know she needs some help.

Me and my siblings are not getting on at the moment as there’s lots of arguments over who should be doing what.

 

[Rachel69]

Sorry I’m not sure where I’m replying to lol

 

[Splashing About]

Hi Rachel
When you reply you can just type in the empty blank box with your name next to it below all other posts.

if you want to tag a particular poster just put @ in front of their name with no spaces e.g. @Rachel69 and that person knows you are replying to them

 

[Splashing About]

My mum suffered hallucinations. I was told that it is memories filling the gaps where their brain doesn’t compute what they see. Basically they see memories but the memories are jumbled and confused.

I would not stay overnight routinely. You will end up affecting your family and it will go on for a long time. You need a permanent solution.

 

[Splashing About]

Regarding family issues: I think dementia throws up all sorts of issues because invariably one person carries the bulk of the emotional and practical support and the others can’t understand what the problem is or don’t wish to.

Unless you are faced with the phone calls, frequent visiting, seeing the issues and worrying about immediate concerns, worrying what lies ahead, are they safe, should you do more....you don’t grasp the unrelenting emotional burden.

I can’t answer this one I’m afraid as I feel that my relationship with one sister has been badly affected because I’ve felt so hurt by her approach. Right now she’s actually stepping up but last year when I was rock bottom and desperate I felt rejected in my pleas for help and accused of making it up. It’s affected me at a very low time.

 

[Hil76]

Sorry I’m not sure where I’m replying to lol

@Rachel69, I thought if you were in a position to you could stay with her temporarily until residential care became available, but you’re not able to do that which is fair enough, I imagine ignoring the calls would be very difficult, it’s a nightmare, I know how you feel, as I said before your siblings are equally responsible and she’s their mum too so it’s their right to be involved. You will be a great support for each other through this. Take her to the GP ASAP and get referred to SS if you’ve not done that already. As hard as it is you need to get the ball rolling.

 

[Splashing About]

I’d look into sheltered housing but and this is a big but...how long will this work for? Alzheimer’s is a progressive condition and moving more than once could be very unsettling so you need somewhere that can cope with moderate (or more) disease.
Also financial concerns....consider how the funding may pan out and who needs to consider paying for this long term.

 

[Hil76]

Regarding family issues: I think dementia throws up all sorts of issues because invariably one person carries the bulk of the emotional and practical support and the others can’t understand what the problem is or don’t wish to.

Unless you are faced with the phone calls, frequent visiting, seeing the issues and worrying about immediate concerns, worrying what lies ahead, are they safe, should you do more....you don’t grasp the unrelenting emotional burden.

I can’t answer this one I’m afraid as I feel that my relationship with one sister has been badly affected because I’ve felt so hurt by her approach. Right now she’s actually stepping up but last year when I was rock bottom and desperate I felt rejected in my pleas for help and accused of making it up. It’s affected me at a very low time.

That’s unfortunate about your sister, I was mum f:t carer because I was the only one in a position to do it, but my sister was there when I needed her and dealt with SS, CPN etc, I’m glad I didn’t have to make decisions alone, I was very glad not to to be alone in the whole thing. That’s my experience, it obviously depends on the relationship you have

 

[Hil76]

My mum suffered hallucinations. I was told that it is memories filling the gaps where their brain doesn’t compute what they see. Basically they see memories but the memories are jumbled and confused.

I would not stay overnight routinely. You will end up affecting your family and it will go on for a long time. You need a permanent solution.

@ Splashing About but a permanent solution takes time, what about in the mean time? Something has to be done, imagine how scared her mum is, just because it’s not real, it’s real to her, the fear is real, I couldn’t ignore my mum when she was frightened and things don’t make sense.

 

[Splashing About]

That’s unfortunate about your sister, I was mum f:t carer because I was the only one in a position to do it, but my sister was there when I needed her and dealt with SS, CPN etc, I’m glad I didn’t have to make decisions alone, I was very glad not to to be alone in the whole thing. That’s my experience, it obviously depends on the relationship you have

I suspect she really had no idea and by the time she ‘got it’ I’d suffered a lot of stress and her obvious distrust of my actions and veiled disdain for me really hurt me. I’m going to try and put it behind me because as you say family should be a support to each other. Actually this forum is useful to get it off my chest