• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

coping with my dads dementia and raising my young family

Rachelx88

New member
Jan 22, 2020
3
hi, I’m new to the forum so apologies if this could have been answered elsewhere or is in the wrong place.
I’m really struggling at the minute to juggle everything and was hoping to hear how others manage similar scenarios.

My dad had a bad stroke two years ago and was left unable to walk needing 5 calls a day from a care company to help with his personal care and lives at home with my mum. He has vascular dementia and alzeihmers which is progressing quite rapidly.

I am a Mum to two children aged 4 and 2, I work 30 hours a week, I am at my mums every morning before work alongside taking them to food shopping and then assisting with giving her time out away from my dad on top of this.

My mum is not coping with being his full time carer but will not accept any respite or consider the next step of putting him in a home. She has verbally told me that I don’t do enough to help her and quite frankly this has hurt me massively.
I don’t think she can see the impact it has upon my own family and the time it takes away from me spending time with my children who I tried for 6 years to conceive.

I don’t know which way to turn, I just feel so helpless as I know she needs support but refuses accept help available. My marriage and family life is now under huge strain. Not sure how to handle this and figure out something that works for my family and my parents, I have nobody but my husband to speak to about it and feel at my wits end as he is also feeling resentful towards the whole situation.

I don’t know which way to turn to make things more manageable and carry so much guilt for the way I feel. I just want to enjoy my own children growing up without being made to feel like a bad person.

Sorry for the long post
 

Mydarlingdaughter

Registered User
Oct 25, 2019
83
North East England UK
Its a big strain and you priority is to your children.
I am very sorry you feel your marriage and family life have been put under strain. It is completely understandable.
I am not surprised you feel helpless. You are in Catch 22.
So your Mum has told you that you dont do enough.
I am sorry to tell you that your Mum is wrong.
I suggest that you talk to your Mum about applying for disability benefits for your Dad. She can apply for Personal Independence Payment or Attendance Allowance, or get a needs assessment from the local council. Whichever way she does it there will be money to pay for extra help.
I am guessing your Mum will refuse.
I was providing a lot of help to my Mum who has dementia, I woke up when I realised this could go on for the next 10 years and Mum could outlive me. At that point I knew I had to step back.
I am sorry if I have made mistakes or assumptions about your situation, I was just assuming you Mum hasn't had a Carers assessment from the local authority and that your Dad hasn't had a local authority needs assessment?
 

Tragicuglyducky

Registered User
Apr 4, 2016
65
You are doing too much by sacrificing your own family. I sympathise because I have an 18 month old. We are self funded and our carers have been very frank when we had a review recently and agreed either 24/7 care or care home. It sounds like you could do with a meeting between you, your mum, a social worker and the carers to see what else can be done to help YOUR MUM. I specify your mum because she can rely on you helping at the expense of your own family. I suggest you being present so that you can plainly disagree with any help from you. The professionals might be able to help get to the root of why your mum doesn’t want respite or care home (assuming because, as a lot of us wrongly believe, that those options are when you’ve failed and it’s the end of the road). Round the clock care from a team of professionals in a place designed for this kind of living alleviates the emotional pressure it takes on loved ones freeing you all up to simply be family. When you have to care and support, you find you don’t have the energy for meeting physical needs as well as emotional so you settle for the stuff that’s easier to achieve and measure like meds, equipment, carers etc and you don’t have the reserves so can’t stand each other’s company etc.
 

Rachelx88

New member
Jan 22, 2020
3
Its a big strain and you priority is to your children.
I am very sorry you feel your marriage and family life have been put under strain. It is completely understandable.
I am not surprised you feel helpless. You are in Catch 22.
So your Mum has told you that you dont do enough.
I am sorry to tell you that your Mum is wrong.
I suggest that you talk to your Mum about applying for disability benefits for your Dad. She can apply for Personal Independence Payment or Attendance Allowance, or get a needs assessment from the local council. Whichever way she does it there will be money to pay for extra help.
I am guessing your Mum will refuse.
I was providing a lot of help to my Mum who has dementia, I woke up when I realised this could go on for the next 10 years and Mum could outlive me. At that point I knew I had to step back.
I am sorry if I have made mistakes or assumptions about your situation, I was just assuming you Mum hasn't had a Carers assessment from the local authority and that your Dad hasn't had a local authority needs assessment?
Thank for your reply!
He has been assessed and received he necessary benefits etc, the hospital put his care package in place after the stroke as he could not be released without one.
My mum is with him 24/7 so I really do feel for her and cannot imagine what it is like being with him all the time, however, she won’t consider respite etc and expects myself and the rest of the family to ease the strain on her and give up our jobs to keep him at home with her.
I think she is in denial about the situation and expects too much of us. I could not afford to keep my house etc nor could my sibling, my mum can’t seem to understand this and makes us feel we are not doing the best that we can.

She was even admitted to hospital and still refused to accept respite care for him which left myself and my sister ringing in sick at our jobs to care for him. I am at breaking point with it all.
 

Rachelx88

New member
Jan 22, 2020
3
You are doing too much by sacrificing your own family. I sympathise because I have an 18 month old. We are self funded and our carers have been very frank when we had a review recently and agreed either 24/7 care or care home. It sounds like you could do with a meeting between you, your mum, a social worker and the carers to see what else can be done to help YOUR MUM. I specify your mum because she can rely on you helping at the expense of your own family. I suggest you being present so that you can plainly disagree with any help from you. The professionals might be able to help get to the root of why your mum doesn’t want respite or care home (assuming because, as a lot of us wrongly believe, that those options are when you’ve failed and it’s the end of the road). Round the clock care from a team of professionals in a place designed for this kind of living alleviates the emotional pressure it takes on loved ones freeing you all up to simply be family. When you have to care and support, you find you don’t have the energy for meeting physical needs as well as emotional so you settle for the stuff that’s easier to achieve and measure like meds, equipment, carers etc and you don’t have the reserves so can’t stand each other’s company etc.
Hi, we had a meeting with the social worker and the care company shortly before Christmas. I brought up the subject of my Mum needing more support and my mum completely freaked out and told them under no uncertain terms that she would not consider respite. They have her a few hours per week where a carer sits in with my dad so she can have some time away from him.
She wants the help but she wants family to do it and there is just no getting through to her that she needs to accept the help from socia workers and she cant seem to see it from our point of view.
Maybe we need to see if they can come out and speak to her again and try to change her mind. I feel for her so much as she has no real quality of life at the minute.
 

Rosettastone57

Registered User
Oct 27, 2016
1,169
Hi, we had a meeting with the social worker and the care company shortly before Christmas. I brought up the subject of my Mum needing more support and my mum completely freaked out and told them under no uncertain terms that she would not consider respite. They have her a few hours per week where a carer sits in with my dad so she can have some time away from him.
She wants the help but she wants family to do it and there is just no getting through to her that she needs to accept the help from socia workers and she cant seem to see it from our point of view.
Maybe we need to see if they can come out and speak to her again and try to change her mind. I feel for her so much as she has no real quality of life at the minute.
Hi @Rachelx88 what would happen if you weren't there to provide this support? This is going to sound harsh, but stepping back is going to probably be the only way to change things. Sometimes you have to wait for a crisis before help is accepted or becomes inevitable. I'm afraid that all the time family members take up the slack in care, social services will limit their involvement. Also, just a thought ,but could your mum be going down the dementia route? I only say that as the need to have just one person involved in care ,is very common with persons with dementia.
 

Tragicuglyducky

Registered User
Apr 4, 2016
65
Hi, we had a meeting with the social worker and the care company shortly before Christmas. I brought up the subject of my Mum needing more support and my mum completely freaked out and told them under no uncertain terms that she would not consider respite. They have her a few hours per week where a carer sits in with my dad so she can have some time away from him.
She wants the help but she wants family to do it and there is just no getting through to her that she needs to accept the help from socia workers and she cant seem to see it from our point of view.
Maybe we need to see if they can come out and speak to her again and try to change her mind. I feel for her so much as she has no real quality of life at the minute.
Try speaking to Age UK. I would imagine they speak to people who are elderly themselves but care for a spouse. They might have other ways to approach helping your mum come round. They might also know of carers meet ups where she might be exposed to other peoples opinions or experiences? How about meeting half way and have your dad try day care once a week? They’re often at care homes and might expose her to care home experiences there too? Or if anything might give her a taste of having a good chunk of the day to do whatever the hell she wants. She might find she is either fresher to care for your dad or resent the fact that she’s back on it when he gets back... might just tip her over to coming round to respite of a permanent placement somewhere.

For you, I would agree with others and you might have to step back for your own sake. If you can afford it or you can get it through work, get a bit of therapy to give yourself some perspective and reduce the weight of the guilt monster on your shoulder. I learned to set boundaries and stick to them.
 

Wildflowerlady

Registered User
Sep 30, 2019
112
Hi @Rachelx88

I really feel for what you are going through. Pressure from your mum is unreasonable and obviously very hurtful, you really are doing a awful lot when you have all your other commitments.
In my case enormous pressure and guilt is placed on me from my sister regarding care for my dad it has resulted in a complete breakdown in communication recently so we have no contact at all now. We both live close sister can walk to dads I have a short drive.
Seven months ago I used to go into dad every other morning and every other evening cooked dad his full English Breakfast. Dad has 4 care visits a day but eventually it was untenable for me to continue doing this as is the case for you.

Circumstances changed in my own home due to my partners health he started having falls (Parkinson's) which resulted in my stopping my morning and evening visits. Sister now goes every morning no longer visits evenings. I still visit dad around 5 afternoons per week and do what I can or rather what she will allow me to :rolleyes: including all his shopping.

I CANNOT PRAISE YOU ENOUGH how you have managed with your young family, work and helping mum I just don't know. What I do know is the enormous strain this puts on your own health and happiness.
I saw my partner struggling with his deteriorating health and getting distressed some days when he felt unwell only for me to end up asking him what I should do regarding going to dad on those days. I was very torn between them and what I should do, fortunately for dad partner always said go to him.
I was seriously becoming very low myself as well.
I had to make the decision I did and withdraw some of the time I was spending at dads.
My partner was and still is at risk of falls but we felt he needs me more in the mornings himself his medication for the day starts on him getting up, he takes further medications four other times during the day.
Unfortunately my sister has never accepted my decision to withdraw my morning visits despite numerous times of trying to explain it to her..

I'm afraid you must put value into what life you have with your husband and children they are your future, dementia hurts everyone not just the PWD and mum is going to have to accept that your home life is now at risk she will have to accept help from others.

It doesn't mean you don't love them or want to help them but it could mean you will eventually resent the time you lose with your children and hubby.
My boundaries have changed and I've every intention of sticking to them.
I am still learning to recover from sisters emotional abuse which has been ongoing for months its not easy and I'm still in the early stage of doing that. Sister refused my asking for us to see someone in the hope that we could resolve things between us.
Hopefully mum will not do that to you once she accepts that help needs to come from other sources too.
I hope there is some resolution to your circumstances soon. Hugs to you, you are a good daughter don't ever doubt it.
 

Mydarlingdaughter

Registered User
Oct 25, 2019
83
North East England UK
Its extremely difficult. My Mum would'nt accept help from anyone else but me, eventually due to being unable to get to the shops and running out of cigarettes ad her favourite tipple, she eventually allowed the carers to do a bit of shopping for her. The situation was ridiculous. I realised there was no way Mum would ever accept the help she needed. In fact she continued to decline, starving herself, refusing pain medication, being very self neglecting, until she had a fall as fortunately was found by carers who called an ambulance. It was not her fault, as she had dementia and no insight. She is now in a care home with 24 hour support. Its very common for PWD to refuse help.

In your situation, I believe that your Mum is asking family (You) to do what really is the role of paid carers, who are trained, experienced, and accountable. Most people will take the easy way out under pressure and the easy way out is to ask family.
There is no way you can change your Mums attitude, however you can change your own. Caring for your Dad is not your responsibility.
What is going through your own mind when you can't say no to your Mums unreasonable demands?
You could try making some kind of commitment to do what you feel is good for you. For example commit to doing their shopping or laundry once a week. Or pop in for an hour every day. Tell Mum that is what you are going to do, and no more. These can be boundaries, which can be very helpful. You can even screen your calls. If there is an emergency, your Mum can dial 999.
 

Recent Threads

Members online

Forum statistics

Threads
113,557
Messages
1,662,173
Members
64,660
Latest member
Sarah jane Franklin