Struggling to help my Mum.

[MsVee]

Hi everyone,

I’m really struggling to help my Mum who has early Alzheimer’s and I’d really like to hear from other people and how they are dealing with it / if anyone is feels the same as me.

One think I’m discovering is how lonely this journey feels when there is no one to talk to that is going through the same thing as you. If I tell anyone they tend to sympathise then tell me a story about how they had a family member who had it and proceed to tell me all about their decline and how bad it was as if I have no idea already of what’s in store for us.

I have siblings who are quite frankly useless and not any help at all. Mum lives with a family member and the relationship has deteriorated to the point that they no longer talk and Mum seems to have developed a hatred for them. That family member is subsequently moving out in the next month as they are finding Mum so difficult to live with - more because of her attitude and being difficult with her than anything else which leaves the burden all on me.

I live an hours round trip away and have 2 young children. Mum can sometimes be pretty argumentative so the kids have been witness to her being not very nice which makes it harder to visit when I have them. I wouldn’t say Mum has changed it’s more like the nice parts of her personality are disappearing and all of her not so pleasant / difficult traits are exacerbated.

I’m not really asking for help so much, I just want to share my story and empathise with anybody else who is struggling with the backlash of this bloody awful disease.

 

[Free2Live]

I understand. In my experience, I have seen a more gentle person emerge. Every case is different. Just take day by day. Try to laugh and recall the good times.

 

[Muttimuggle]

I understand the loneliness. This site, this forum, was a lifeline to me. I have a sibling who has more or less opted out too. I did used to feel so alone and so misunderstood. All I can say,on a more positive note, for me at least, is that the struggle used to be harder, when my mother was fighting with all her might against any suggestion that her mental faculties were deteriorating. My mother has mixed dementia. The part which came last was the Alzheimer's However, when circumstances demanded change, after my mother fell and broke her hip, she began to recognise the need for help and she went fro living alone with 2 care visits per day (and me as the one who came to help and sort out the muddles) to going into a residential care home. Although her dementia seems to be worsening with time now, she is so much more contented and enjoys the on call attention and help. It has been a weight off my shoulders. Now I just visit and, as things are at the moment, I can take her out sometimes too, She is far easier, no longer argumentative. This won't be the scenario for all with a loved one with dementia. I just wanted to say that I never imagined this easier time. I hope you find solutions because, of course you matter too, your needs are important. You will be a better daughter if you can feel better, I hope the people on this site can offer you kind support.

 

[Violet Jane]

I think that you need to ascertain exactly what help your mother will need after the family member moves out. Even if they don't get on s/he would, I assume, be doing a lot to do with running the house. His/her departure will leave a big hole.

 

[SherwoodSue]

I would make sure the GP knows that she has hone from living with someone to living alone. Your mother is likely to be needing more care in the future. Does she has savings or Will social services be involved?
Is she claiming attendance allowance ? Is there a POA in place.
I would work with any other interest family member to do this.
After that we very realistic about what you can and cannot do, given you have small children and don’t live around the corner

 

[canary]

I recognise the loneliness and feeling of isolation @MsVee
This forum has been my lifeline too. We all understand what it is like and you can come on, have a rant or a moan and we understand. Some people have a sort of diary running so that they can write down their feelings in a safe place.

 

[Mazurka]

Just been reading your post. My wife has changed too. Because we have no kids, I am the sole carer. O ther relatives have made offers, but when it comes to the crunch, you are alone. I am beginning to wonder if it is worth getting someone to come to our home on a fairly regular basis. I know it will cost, but this is no life for the carer. I eel a bit of a failure not coping, but I am 79 and so I have also thought of getting a cleaner. Problem is, she always goes into a mood when anyone is in the house, unless it is the nurse from the Mental Health Hospital. Any ideas?

 

[canary]

Problem is, she always goes into a mood when anyone is in the house, unless it is the nurse from the Mental Health Hospital. Any ideas?

Do it anyway.
OH wasnt keen on having carers coming in, but now he rather looks forward to them coming

And besides - you need it. It isnt all about the person with dementia

 

[NellieP]

Hi everyone,

I’m really struggling to help my Mum who has early Alzheimer’s and I’d really like to hear from other people and how they are dealing with it / if anyone is feels the same as me.

One think I’m discovering is how lonely this journey feels when there is no one to talk to that is going through the same thing as you. If I tell anyone they tend to sympathise then tell me a story about how they had a family member who had it and proceed to tell me all about their decline and how bad it was as if I have no idea already of what’s in store for us.

I have siblings who are quite frankly useless and not any help at all. Mum lives with a family member and the relationship has deteriorated to the point that they no longer talk and Mum seems to have developed a hatred for them. That family member is subsequently moving out in the next month as they are finding Mum so difficult to live with - more because of her attitude and being difficult with her than anything else which leaves the burden all on me.

I live an hours round trip away and have 2 young children. Mum can sometimes be pretty argumentative so the kids have been witness to her being not very nice which makes it harder to visit when I have them. I wouldn’t say Mum has changed it’s more like the nice parts of her personality are disappearing and all of her not so pleasant / difficult traits are exacerbated.

I’m not really asking for help so much, I just want to share my story and empathise with anybody else who is struggling with the backlash of this bloody awful disease.

Hi, sorry to hear that you have been left to cope on your own. I can empathise as my mum has dementia and her personality has changed a lot. She used to be very placid and quite calm, but now she gets angry quickly and threatens to storm off, all very different traits from how she used to be. I can jolly her along a bit and she will warm up to me but other times I have to leave as she just sees me as a strange woman in the house and it makes her very annoyed, slamming doors etc. Hope you manage to get some other care or support in to help.

 

[Muttimuggle]

Just been reading your post. My wife has changed too. Because we have no kids, I am the sole carer. O ther relatives have made offers, but when it comes to the crunch, you are alone. I am beginning to wonder if it is worth getting someone to come to our home on a fairly regular basis. I know it will cost, but this is no life for the carer. I eel a bit of a failure not coping, but I am 79 and so I have also thought of getting a cleaner. Problem is, she always goes into a mood when anyone is in the house, unless it is the nurse from the Mental Health Hospital. Any ideas?

Could you talk how you are feeling through with that mental health nurse? They will understand completely that, as your wife's carer, you need that support. Could they come to the house and say to your wife that it is important that this extra help is got in? Get them to try to explain and re-explain it's importance or to say firmly that really this is necessary and things will go downhill unless it is started. Then it would be a matter of you reminding your wife each time that the mental health services have said this is necessary.You could even say that it is out of your hands -which is stretching the truth but - in a sense it is.Remember you are important and unless you are able to cope you cannot provide your wife with what she needs.

 

[RedLeanne]

Just been reading your post. My wife has changed too. Because we have no kids, I am the sole carer. O ther relatives have made offers, but when it comes to the crunch, you are alone. I am beginning to wonder if it is worth getting someone to come to our home on a fairly regular basis. I know it will cost, but this is no life for the carer. I eel a bit of a failure not coping, but I am 79 and so I have also thought of getting a cleaner. Problem is, she always goes into a mood when anyone is in the house, unless it is the nurse from the Mental Health Hospital. Any ideas?

I would do it anyway. Mum in law resisted for ages but the house was too much for her. She has now accepted carers who will at least wash up for her so when we visit, we haven't got it all to do. She is now OK with it and is often nicer to them than us.

 

[mogg]

Just been reading your post. My wife has changed too. Because we have no kids, I am the sole carer. O ther relatives have made offers, but when it comes to the crunch, you are alone. I am beginning to wonder if it is worth getting someone to come to our home on a fairly regular basis. I know it will cost, but this is no life for the carer. I eel a bit of a failure not coping, but I am 79 and so I have also thought of getting a cleaner. Problem is, she always goes into a mood when anyone is in the house, unless it is the nurse from the Mental Health Hospital.

 

[mogg]

Could you arrange for your wife to go out when a cleaner is in the house? maybe it's time for those relatives to step up and help, a wee drive out for coffee maybe, I have the same scenario but I'm probably my own worst enemy wanting to do it all myself but I know it's time to just say yes please I need your help, it's not failing on our part, we are only human not machines.

 

[Chizz]

Hi @Mazurka
I know where you're at, as I am there and have been for 6 years or so. I'm sole full time carer for my OH and we're in our 70's.
No shame or feeling of failure if you can't do it all. I can't lift my wife on my own. She used to fall quite regularly, However, for a year now, I've had carers coming in three times a day for personal care, toileting, hoisting, etc. I still do the rest - the shopping, food prep, cooking, feeding my OH by hand as she can no longer do this, and the same with drinks, washing up, washing soiled clothing, bedding, etc etc. I used to have a cleaner once a fortnight, but she's moved away because of a change in her husband's job (which has priority in these straightened times), and so far not secured a new cleaner. I still do the garden and enjoy is as a quiet respite world.
Having carers in does make a big difference. Having a cleaner would as well. Because of the dementia, you, not your wife, has to make the decisions, and the decisions have also to take into account what's best for you as well!.
Yes I'm still alone and lonely, but that's a separate issue. Get respite help via Mind, family members, invite friends round for a cup of tea and a chat with you. Make sure, if you can, to keep in touch with family and friends, even only by phone calls. My wife is now bedbound so we can no longer go out, but when I could get her into a wheel chair we went to the Dementia Cafe, Memory Singers, etc etc as such outside visits are necessary for both PWD and carer, as are other visits, such as to the park or a garden centre etc.
Best wisges

 

[Pearlybobs]

@MsVee, I hear you! There is only me, not siblings or extended family. My OH is wonderful though and my mum adores him, he is still unable to do the stuff I need to.
I don’t think my mum remembers getting the diagnosis, she has always been a very challenging person and my relationship with her has been difficult for my whole life, which makes this harder. I just don't know what to do if Im honest, but I’m sure I will find out in time. Its just scary and there are so many things to consider, like her welfare, what I can realistically do and what support I can access.
My Mum is still driving and I’m desperate that they take her licence of her because if I suggest that she surrenders it then it will cause all sort of arguments. I am scared that Mum will be come one of those violent people as she has always been supportive of using force to solve problems and discipline me and others. What a nightmare.
Take care xxx

 

[SeaSwallow]

@MsVee, I hear you! There is only me, not siblings or extended family. My OH is wonderful though and my mum adores him, he is still unable to do the stuff I need to.
I don’t think my mum remembers getting the diagnosis, she has always been a very challenging person and my relationship with her has been difficult for my whole life, which makes this harder. I just don't know what to do if Im honest, but I’m sure I will find out in time. Its just scary and there are so many things to consider, like her welfare, what I can realistically do and what support I can access.
My Mum is still driving and I’m desperate that they take her licence of her because if I suggest that she surrenders it then it will cause all sort of arguments. I am scared that Mum will be come one of those violent people as she has always been supportive of using force to solve problems and discipline me and others. What a nightmare.
Take care xxx

Hello again @Pearlybobs I have just replied to your original post but thought that it would be useful to reply to this one also.
Regarding the driving, your mums insurers must be informed of her diagnosis as must the DVLA. That is the law. If you really think that she is a danger on the road you could inform them of that also. If her license is revoked do what others on here have done, blame the doctors.
Regarding help, it is out there but you have to seek it out. Contact your local adult social services to request a needs assessment for your mum and a carers assessment for yourself.
When you see the consultant talk to them about any issues you have. You say that you worry about your mum becoming violent, also discuss that with the consultant. It may never happen but there are meds that can help.
As I said before keep posting if you need advice.

 

[Mazurka]

Could you arrange for your wife to go out when a cleaner is in the house? maybe it's time for those relatives to step up and help, a wee drive out for coffee maybe, I have the same scenario but I'm probably my own worst enemy wanting to do it all myself but I know it's time to just say yes please I need your help, it's not failing on our part, we are only human not machines.

Trouble is, she won't leave the house, let alone get in a car. She spends a lot of time in darkened bedroom, so I will have to rely on her going in there. Again, though, after the person leaves, she will be in a state, and it takes ages to calm her down again. Now she has started to cut things up. Papers, photos, books, and even two bed sheets and one mattress cover. I have to hide any important paperwork. Anyone ever had this experience?

 

[canary]

Now she has started to cut things up. Papers, photos, books, and even two bed sheets and one mattress cover. I have to hide any important paperwork. Anyone ever had this experience?

Mum cut up all her bedding, including the duvet
You will have to hide scissors and sharp knives. Take away important documents and family photos etc for safekeeping, or buy a safe. Dont rely on hiding them - she may find them, even if they are in a place she would never go!

 

[Violet Jane]

@Mazurka, could you appeal to your wife's sense of status and say something along the lines of 'everyone middle class has a cleaner these days. Betty and Janet have one. I think we should get one.' Or, you could say that it's a government scheme to provide jobs to unemployed people. Or, that you've hurt your back / have got Arthritis and need a bit of help in the house. The important thing is not to make it anything to do with her dementia / limitations.

 

[Pearlybobs]

Hello again @Pearlybobs I have just replied to your original post but thought that it would be useful to reply to this one also.
Regarding the driving, your mums insurers must be informed of her diagnosis as must the DVLA. That is the law. If you really think that she is a danger on the road you could inform them of that also. If her license is revoked do what others on here have done, blame the doctors.
Regarding help, it is out there but you have to seek it out. Contact your local adult social services to request a needs assessment for your mum and a carers assessment for yourself.
When you see the consultant talk to them about any issues you have. You say that you worry about your mum becoming violent, also discuss that with the consultant. It may never happen but there are meds that can help.
As I said before keep posting if you need advice.

Thank you I will do xxx