Feeling so alone

Vics78

New member
Aug 17, 2022
4
0
This is a hard one to write. I need support from someone who can understand where I am coming from and I’m not sure where to go?
My dad was diagnosed with dementia in February 2020, he took himself off to be tested and only told us when he had a diagnosis. My mum was diagnosed with Alzheimer’s just before Christmas 2021. They live together in a bungalow.
Both parents have physical disabilities, dad having had polio as a baby needs a calliper to walk. He is accepting of support and is calm and appreciates that we’re trying to help. Mum is argumentative, swears telling me to **** off one minute and nice as pie the next, cries, verbally aggressive towards dad which is very uncomfortable to hear and has changed personality. She will send me numerous messages, FaceTimes and calls a day and if I don’t answer she just keeps going until I do. She moans about dad constantly.
I have 2 older brothers who are fantastic and do their bit too.
My problem is, mum is my best friend. She is the person I would call first about anything and we would spend the whole day together every weekend. She would be round at my house with my kids 3 times a week. She would be my voice of reason, we’d laugh and cry together. That has all gone since lockdown. When we speak she will only talk about medication, her pains, her hospital appointments etc. If I tell her something important she brushes over so I have stopped.
My husband just doesn’t get it. Usually you might have one parent with it but to have both is tough.
I know I have withdrawn a little and I just feel guilty constantly about not doing enough and not being a good enough daughter. My youngest son is 13 and he was a complete nannies boy. He comes with me most days to visit as he doesn’t like it when mum shouts at me but if he offers to help or do something she completely changes and is nice. He is also really scared that they both will forget who he is ?
Is there any support out there for family?
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,415
0
Newcastle
Hi @Vics78 and welcome to Dementia Talking Point. I am sorry to hear about your very difficult circumstances. I don't have any experience in that area but I hope someone else from our supportive and friendly community will be able to give you some helpful suggestions.
 

MaNaAk

Registered User
Jun 19, 2016
11,754
0
Essex
This is a hard one to write. I need support from someone who can understand where I am coming from and I’m not sure where to go?
My dad was diagnosed with dementia in February 2020, he took himself off to be tested and only told us when he had a diagnosis. My mum was diagnosed with Alzheimer’s just before Christmas 2021. They live together in a bungalow.
Both parents have physical disabilities, dad having had polio as a baby needs a calliper to walk. He is accepting of support and is calm and appreciates that we’re trying to help. Mum is argumentative, swears telling me to **** off one minute and nice as pie the next, cries, verbally aggressive towards dad which is very uncomfortable to hear and has changed personality. She will send me numerous messages, FaceTimes and calls a day and if I don’t answer she just keeps going until I do. She moans about dad constantly.
I have 2 older brothers who are fantastic and do their bit too.
My problem is, mum is my best friend. She is the person I would call first about anything and we would spend the whole day together every weekend. She would be round at my house with my kids 3 times a week. She would be my voice of reason, we’d laugh and cry together. That has all gone since lockdown. When we speak she will only talk about medication, her pains, her hospital appointments etc. If I tell her something important she brushes over so I have stopped.
My husband just doesn’t get it. Usually you might have one parent with it but to have both is tough.
I know I have withdrawn a little and I just feel guilty constantly about not doing enough and not being a good enough daughter. My youngest son is 13 and he was a complete nannies boy. He comes with me most days to visit as he doesn’t like it when mum shouts at me but if he offers to help or do something she completely changes and is nice. He is also really scared that they both will forget who he is ?
Is there any support out there for family?
Welcome to the forum @Vics78 you are lucky to have such lovely children. First of all do your parents have carers coming because now is the time to get more help and do you or your siblings have POA? I live on my own but I cared for dad when he suffered with Alzheimers. There are members on this forum who also have teenagers and I hope they'll be along soon. I also think you should contact your local authority who will put you in contact with your local Dementia Friends. They should be able to tell you what services they can provide for your parents and for you as a family. I think you're doing a brilliant job caring for your parents but they would want you to put your children first.

Hugs

MaNaAk
 

silkiest

Registered User
Feb 9, 2017
865
0
Hi @Vics78 and welcome to the forum.
I understand totally how difficult it is with more than one family member with dementia. My mum and mum in law both have alzheimers and my admiral nurse thinks my dad may be in early stage vascular dementia. I'm sorry that there are children in the mix as that makes it even harder - I think some local authorities have special support for young carers. Admiral Nurses are specialist nurses whose role is to support the families of people with dementia. If there is a local based nurse available they will be able to tell you what is available in your area.Some areas only have the freephone telephone service unfortunately (0800 888 6678)
When MIL was first diagnosed both myself and OH went on a course ran by the local nurses to educate us about dementia which was very useful and they have supported me through various problems with all 3 of them.
Local councils adult services should be able to give advice and do care/ carers assessments to see what help you and your PWD need.
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,002
0
72
Dundee
Welcome to the forum @Vics78.

I’m so sorry to read about you situation. It must be so hard to be caring for two people who have a dementia diagnosis. I’m glad you’ve found this forum. There will always be someone her to listen and support.

In relation to your son I thought you might find some of the links on this page useful -


I was particularly interested in this one as it has a section for teens -


Please keep posting here. I think it will help you to feel less alone.
 

Vics78

New member
Aug 17, 2022
4
0
Hi @Vics78 and welcome to Dementia Talking Point. I am sorry to hear about your very difficult circumstances. I don't have any experience in that area but I hope someone else from our supportive and friendly community will be able to give you some helpful suggestions.
Thank you
 

Vics78

New member
Aug 17, 2022
4
0
Welcome to the forum @Vics78 you are lucky to have such lovely children. First of all do your parents have carers coming because now is the time to get more help and do you or your siblings have POA? I live on my own but I cared for dad when he suffered with Alzheimers. There are members on this forum who also have teenagers and I hope they'll be along soon. I also think you should contact your local authority who will put you in contact with your local Dementia Friends. They should be able to tell you what services they can provide for your parents and for you as a family. I think you're doing a brilliant job caring for your parents but they would want you to put your children first.

Hugs

MaNaAk
They have have carers coming three times a week. Mum will not allow them to do anything or touch anything ? She thinks the carers are all about her and dad doesn’t even get a look in.
We do have power of attorney but no idea when that gets put in place as my dad organised all of that about 10yrs ago.
 

MaNaAk

Registered User
Jun 19, 2016
11,754
0
Essex
They have have carers coming three times a week. Mum will not allow them to do anything or touch anything ? She thinks the carers are all about her and dad doesn’t even get a look in.
We do have power of attorney but no idea when that gets put in place as my dad organised all of that about 10yrs ago.
If it's for finance you need to make sure that you register it with the banks I think it's best to do it as soon as you can.

How about using a befriender service from Age UK?

MaNaAk
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,259
0
High Peak
I hope you can find something to help your childen understand - I'm afraid I don't know what's available.

For you, this is a time of transition. You've been used to your status in the middle of your family, with your parents above and older and your children below and younger. Although your parents are still there, your role within the family is changing and you are - effectively - becoming the matriarch. Unlike when parents die, and you know for sure you're now the oldest, when you're caring for parents, it kinda creeps up on you! (I know your older brothers are helping too but don't let everything fall on you!)

This change hit me very strongly one day and it was actually a couple of years before mum was diagnosed. (I knew but other family were in denial.) It was a small thing - mum was on the phone to me asking what everyone wanted for Christmas (probably in the summer time!) and getting rather muddled. I suddenly thought, 'Hang on a minute, doesn't mum usually organise things independently of anyone else? When did she start asking ME what to do?' It dawned on me she was suddenly doing an awful lot of asking me what she should do about x, y or z whereas previously she'd be the one telling me. Other family members had also started asking me to co-ordinate things rather than asking mum.

I think a similar thing is happening with you. It's a double whammy to have both parents with dementia - I have no idea how you will cope. It is probably time to register the PoA with the bank and sort out their finances. Definitely separate their bank accounts if they are currently joint, as that will make things much easier in the future, if one has to move into care. (i.e. it will be clear what money belongs to each.)

I also think it would be good to sit down with your husband and have a serious talk about the future. It would help if you could decide together how you will deal with your parents, how much help you are prepared to give, where your 'lines in the sand' are, etc. Whatever issues/care needs your parents have currently will increase considerably and you need to think about yourself, your husband and children too.

I hope you'll continue to post here - the forum is very supportive...
 

Vics78

New member
Aug 17, 2022
4
0
I hope you can find something to help your childen understand - I'm afraid I don't know what's available.

For you, this is a time of transition. You've been used to your status in the middle of your family, with your parents above and older and your children below and younger. Although your parents are still there, your role within the family is changing and you are - effectively - becoming the matriarch. Unlike when parents die, and you know for sure you're now the oldest, when you're caring for parents, it kinda creeps up on you! (I know your older brothers are helping too but don't let everything fall on you!)

This change hit me very strongly one day and it was actually a couple of years before mum was diagnosed. (I knew but other family were in denial.) It was a small thing - mum was on the phone to me asking what everyone wanted for Christmas (probably in the summer time!) and getting rather muddled. I suddenly thought, 'Hang on a minute, doesn't mum usually organise things independently of anyone else? When did she start asking ME what to do?' It dawned on me she was suddenly doing an awful lot of asking me what she should do about x, y or z whereas previously she'd be the one telling me. Other family members had also started asking me to co-ordinate things rather than asking mum.

I think a similar thing is happening with you. It's a double whammy to have both parents with dementia - I have no idea how you will cope. It is probably time to register the PoA with the bank and sort out their finances. Definitely separate their bank accounts if they are currently joint, as that will make things much easier in the future, if one has to move into care. (i.e. it will be clear what money belongs to each.)

I also think it would be good to sit down with your husband and have a serious talk about the future. It would help if you could decide together how you will deal with your parents, how much help you are prepared to give, where your 'lines in the sand' are, etc. Whatever issues/care needs your parents have currently will increase considerably and you need to think about yourself, your husband and children too.

I hope you'll continue to post here - the forum is very supportive...
Thank you.
 

Janebusybee

New member
Jul 16, 2022
9
0
This is a hard one to write. I need support from someone who can understand where I am coming from and I’m not sure where to go?
My dad was diagnosed with dementia in February 2020, he took himself off to be tested and only told us when he had a diagnosis. My mum was diagnosed with Alzheimer’s just before Christmas 2021. They live together in a bungalow.
Both parents have physical disabilities, dad having had polio as a baby needs a calliper to walk. He is accepting of support and is calm and appreciates that we’re trying to help. Mum is argumentative, swears telling me to **** off one minute and nice as pie the next, cries, verbally aggressive towards dad which is very uncomfortable to hear and has changed personality. She will send me numerous messages, FaceTimes and calls a day and if I don’t answer she just keeps going until I do. She moans about dad constantly.
I have 2 older brothers who are fantastic and do their bit too.
My problem is, mum is my best friend. She is the person I would call first about anything and we would spend the whole day together every weekend. She would be round at my house with my kids 3 times a week. She would be my voice of reason, we’d laugh and cry together. That has all gone since lockdown. When we speak she will only talk about medication, her pains, her hospital appointments etc. If I tell her something important she brushes over so I have stopped.
My husband just doesn’t get it. Usually you might have one parent with it but to have both is tough.
I know I have withdrawn a little and I just feel guilty constantly about not doing enough and not being a good enough daughter. My youngest son is 13 and he was a complete nannies boy. He comes with me most days to visit as he doesn’t like it when mum shouts at me but if he offers to help or do something she completely changes and is nice. He is also really scared that they both will forget who he is ?
Is there any support out there for family?
 

Janebusybee

New member
Jul 16, 2022
9
0
I so feel your pain, my relationship with my mum sounds so similar, it is like losing your soul mate and best friend at the same time. I feel so lost without her companionship
 

Yankeeabroad

Registered User
Oct 24, 2021
162
0
Hi @Vics78 and welcome.
I’m so sorry to hear about your parents. It’s tough.

Both of my parents have dementia and I have had to work really hard getting all the admin in place. I am quite up front about telling organisations they both have dementia and can’t speak for each other. Hopefully your brothers can help out here. It might be helpful to make a list (I keep a spreadsheet of info and status, OCD I know but it really helps!) that I share with my sister. She cant really do admin due to chemo/side effects, but at least we’re on the same page.

Emotionally this is very hard. My mom declined very rapidly (she seemed to go straight to middle stage then very rapidly to late stage). We were close, despite me living overseas for years, and was often my sounding board and support pillar. She can’t really be that now. As said before, the relationship is shifting and you will be the carer. You will still be able to find joy in the relationship and your mom is still in there peeking out. My mom doesn’t remember my birthday and doesn’t seem to care when reminded about it, doesnt really want to hear about my career (or lack of since her decline ?), however she still offers to rub my feet after I’ve rubbed her feet and hands with lotion. Bliss
Give yourself some time to accept what’s happening to your parents and the change of duties.

Your mom is likely scared and confused as to what is happening and feels things are out of her control. That often comes out as swearing, yelling, short tempered, etc. And multiple phone calls. Only talking about her stuff may mean she’s very worried about keeping control of it.

I hope you can find a face to face support group. I live in Norway for the moment where it’s not a thing but have found this forum a source of support as well as an informal network in the US where my parents live.