My mother is annoying the hell out of me

[existingaspect]

I hate the person she's become. Alzheimer's is a bitch! I told my mother "I hate you" under my breath. I never in my life once said this. She's just become so docile in the mind and it's so annoying. I don't want to take care of her anymore. In the past she was never like this. She was always on top of everything and I mean every detail. She taught me everything I know I needed to be a functioning human being like getting ready for school or eat the right foods etc. Now it's like the roles have reversed. She's become this walking shell of her former self repeating everything she says multiple times. Sometimes she just makes things up. She'll stay up late until 4am knocking on my door excessively when I have to get up early in the morning. I know if my mother was cognitive right now she would feel extremely horrible at what she's turned into.

She's still her sweet self but I can't stand this **** anymore. I physically had to grab very important documents from her hand because she wouldn't hand them to me. I'm trying to be patient with her. I don't know why people think this is a rewarding task. I certainly don't. I didn't choose this role. It just landed on me because we don't have any family anywhere near us. Talking to my grandmother helped a little bit but she's 90 years old and lives in the UK. She can't travel.

I need help looking into Medicaid or Medicare for a caregiver to take over. Does anyone have any suggestions on to manage anger.

 

[Grannie G]

Hello @existingaspect

Does anyone have any suggestions on to manage anger.

It`s tough but all I can suggest is you ask for help.

ADI - Alzheimer’s Association

Alzheimer's Disease International (ADI) is the worldwide federation of Alzheimer associations, which support people with dementia and their families

www.alzint.org

Just try to think how it would be if it was you with the dementia, know your mother didn`t do anything wrong to be like this and is no longer in control of her behaviour while you are.

Medicare USA

Medicaid Eligibility | Medicaid

Medicaid is a joint federal and state program that, together with the Children’s Health Insurance Program (CHIP), provides health coverage to over 72.5 million Americans, including children, pregnant women, parents, seniors, and individuals with disabilities. Medicaid is the single largest...

www.medicaid.gov

Contact these people and ask for help.

 

[Lawson58]

I hate the person she's become. Alzheimer's is a bitch! I told my mother "I hate you" under my breath. I never in my life once said this. She's just become so docile in the mind and it's so annoying. I don't want to take care of her anymore. In the past she was never like this. She was always on top of everything and I mean every detail. She taught me everything I know I needed to be a functioning human being like getting ready for school or eat the right foods etc. Now it's like the roles have reversed. She's become this walking shell of her former self repeating everything she says multiple times. Sometimes she just makes things up. She'll stay up late until 4am knocking on my door excessively when I have to get up early in the morning. I know if my mother was cognitive right now she would feel extremely horrible at what she's turned into.

She's still her sweet self but I can't stand this **** anymore. I physically had to grab very important documents from her hand because she wouldn't hand them to me. I'm trying to be patient with her. I don't know why people think this is a rewarding task. I certainly don't. I didn't choose this role. It just landed on me because we don't have any family anywhere near us. Talking to my grandmother helped a little bit but she's 90 years old and lives in the UK. She can't travel.

I need help looking into Medicaid or Medicare for a caregiver to take over. Does anyone have any suggestions on to manage anger.

The emotions you are experiencing right now are very common in people who care for people with dementia. Anger, frustration, resentment and intense dislike are all part of what many of us go through and I believe it is harder for those who care for a parent than those who care for a spouse or other relative.

You made one key point and that is that it wasn’t your choice and it landed on you with a hell of a thump. That is so true for most of us as this disease just sneaks up on you, little things that you notice quite a while before anyone makes a diagnosis and by that time you are the one, the one who gets no peace, no rest, no time for yourself.

And it’s awful. This disease destroys families, marriages and friendship as well as individuals and I totally agree that it is quite unrewarding. As you said yourself, your mother would be appalled if she understood what she has become and cannot be blamed for what she has become.

I do think that a talk with one of the Alzheimers helplines or equivalent for where you live would be of assistance to you and I am sorry that I can’t offer the advice you need. But I just wanted to let you know that we pretty much understand where you’re coming from.

 

[canary]

Hello @existingaspect

Im sorry you are having so many problems looking after your mum. People think that dementia is just about memory loss, but its not - it is loss of everything and you are grieving for the loss of your mum

Not everyone is a natural caregiver. I do not find it a rewarding task looking after my OH either, although I do do it. Having professionals in will help a lot. Im in UK, so I dont know about medicaid or medicare, but I hope you can get some help

 

[Cardinal]

I hate the person she's become. Alzheimer's is a bitch! I told my mother "I hate you" under my breath. I never in my life once said this. She's just become so docile in the mind and it's so annoying. I don't want to take care of her anymore. In the past she was never like this. She was always on top of everything and I mean every detail. She taught me everything I know I needed to be a functioning human being like getting ready for school or eat the right foods etc. Now it's like the roles have reversed. She's become this walking shell of her former self repeating everything she says multiple times. Sometimes she just makes things up. She'll stay up late until 4am knocking on my door excessively when I have to get up early in the morning. I know if my mother was cognitive right now she would feel extremely horrible at what she's turned into.

She's still her sweet self but I can't stand this **** anymore. I physically had to grab very important documents from her hand because she wouldn't hand them to me. I'm trying to be patient with her. I don't know why people think this is a rewarding task. I certainly don't. I didn't choose this role. It just landed on me because we don't have any family anywhere near us. Talking to my grandmother helped a little bit but she's 90 years old and lives in the UK. She can't travel.

I need help looking into Medicaid or Medicare for a caregiver to take over. Does anyone have any suggestions on to manage anger.

As others have said you are dealing with the loss of your mother even though she is still with you. Everyday you are reminded that she is no longer the person she used to be.

I can tell by your question about Medicare and Medicaid that you must be in the US. There are people from all over the world on this site but the majority live in the UK. I also live in the US but like the compassion and helpful advice I get from people on this site. The way things are handled with social services and financial things are totally different between the UK and the US. There is another Alzheimer’s Association message board where the majority of people live in the US. People on that site can give you advice on getting help from social services and how to handle financial things. It is very important to get everything legally set up between you and your mom. People on the US message board can give advice on that. Here is the link for that site:

Supporting Someone Living with Dementia

Welcome to ALZConnected! Please use this forum to share your experiences as a caregiver for someone living with dementia and connect with others who can provide support.

alzconnected.org

 

[T1000]

@existingaspect just wanted to offer you a hug and say sorry you are going through this. I used to have mum at home with us, and although she is early on in the journey, her anxiety , depression and worsening symptoms meant we could not do it any more after several years. It is exhausting, and with no other family help I completely relate to what you are feeing. In the end we found a home locally where mum still has independence to go out, and is happy enough. This way I have more quality time, even though I still handle all the life admin. It is very hard to see them decline. I do hoep you can get a listening ear locally and some support.

 

[MapleCoffee]

Hi @existingaspect

We tell ourselves it’s “rewarding” so we can sleep at night. In reality, it’s horrible, and you end up angry and full of hate and then you cry about it afterwards because you’re sitting here thinking “that’s my relative, I remember how she looked after me”. And then it spirals. At least, I do.

Personally, I found The Selfish Pig’s Guide to Caring by Hugh Marriott a very helpful book, the bits about dealing with social services won’t be applicable to America but all the parts about handling your emotions will still work.

It’s a normal response and it’s not your fault.

 

[mully]

Hi existingaspect, I hear what you say and know how you feel. My sister has Alzheimer's she is 58, she is my baby sister. I have started a journal which I write every night. I vent all my feeling about what has happened during the day. I write how I feel, how I wish I didn't agree to do it. The only way I can look at my sister is to say to myself, my original sister has left the building and this is the new one in her place. I love her very much, but sometime I want to run a million miles away. I am wrapping my arms around you and saying I know.

 

[Dee M]

Dear Existingaspect: Oh how I feel everything you are going through. Firstly, and above all, you are only human! It is okay and natural to have all these feelings. This is a sad and challenging journey, taken as a fellow daughter and main carer. Feeling that you have failed, frustration and yes, sometimes on very bad days, even hate (such a strong negative word, but it must be said). But more than anything it is the lack of control. This horrid disease, which snatches so much away from the person you love and care for. Everything changes. It is exhausting. Yes, on good days I feel it is wonderful to spend time with my mum. These window periods are spent with a truly wonderful person who is a mother and friend and who raised 8 children on her own for years. She held down many jobs to make sure we never went without. She gave me and my siblings so much love and care (because she had spent many years in foster care with so many sad experiences). She loved, cared and protected all her children. Payback time, right? Especially for me, who never had her very own family. In reality, I am 64 and my mum is 85 - but in the world of the 'Big A' - my mum is now around 15 years old.......she talks about her boyfriend, who was her first love, as if she can just call round to see him. Mum talks of the past constantly and remembers so little from the more recent 60 years. She forgets the time period being married to my father (now deceased), her painful divorce, and the times she spent with all her children and grandchildren. She forgets that my lovely older sister has died. All these memories, sometimes painful, but mostly wonderful: Gone. A life, fully lived by someone quite special and so well loved by many. My mum is in the middle stage of Alzheimer's, and more challenging times are yet to come. I know it. I am heartsick when she gets frightened and so confused. I get frustrated when questions are repeated over and over (which I call looping) and the constant following me around for reassurance, where I end up having no time to myself (which I call shadowing). I just take some deep breaths, suppress the inner scream, talk gently and kindly and hold my Mum's hand and tell her she is safe and loved. I want to make the condition go away, but I am powerless against time. I shall never be prepared for what is to come, but I can obtain as much information and support as I can and I have found this site invaluable and supportive with good sound advice and guidance. I wanted to let you know that you have a lot of support on this site. Please stay with us and follow other threads for advice and sometimes laugh out loud moments (truly). Stay strong and obtain medical and care support. Warmest wishes and helping hands from across the sea. x

 

[RNcaregiver]

Hi @existingaspect. I can totally relate to your post. My mother has always been overbearing and co-dependent on me as the oldest daughter and the dementia made it worse. I tried caring for her in my home, but after a couple of months I was at my wits end. It got to a point where I became out of character and even yelled at her once. I knew I could no longer care for her alone and keep my sanity.

FYI - If your mom qualifies for Medicare/Medicaid - they do not pay for anything outside of a Home Health RN or a Home Health attendant (cooking, cleaning, maybe assistance w/ showering) service a couple times a week for a few hours. It sounds like she would need more 24/7 care, which would either be a person you pay(expensive) or an assisted living/nursing home. Because im a nurse that works nights, I needed a carer 24 hours and that cost was more than the cost of an assisted living.

We are now self paying for an assisted living ($6K/mo) bc she does not qualify for Medicaid (typically low income w/ no assets only). Medicare (typically anybody over 65 who has paid into Medicare at a job) does not provide any financial assistance toward nursing home or residential living, except for medications. Nursing homes will take Medicaid, but sometimes it’s only the not so good ones that do. It’s very frustrating but luckily my mom has a decent retirement/SSI benefit to help w/ the self pay.

Good luck and dont feel bad for how you feel. We are only human and as you said, we did not ask for this added responsibility. Take care!

 

[Jacaranda16]

My heart weeps for ALL of You. and Existingaspect, I know, I suffer too. I am full time carer for my husband and recently things are "changing". I play roles to appease whatever is worrying him. I can't hold a conversation anymore because he either can't follow it or wants to organise me when he's really no idea what we're talking about and then gets angry. TV has to be monitored but he can go off at any angle. He was always "the macho man" and it's painful to see him now so. I really don't exist anymore. I just do a job. I have become a slug attached to a living being but am responsible for everything, absolutely everything. Family are useless. How much can you tell them what's it like ? He makes things up and who knows what they believe. You have to be here, living it. Two or three hours is not going to give them a experience of what I live like and that's only every 3./4 months. I have loved this man the last fifty years and he is the love of my life but it's all going and sometimes I hate him. How can that be? Wow, thank you for that! Apologies.

Changing the subject completely and I apologise, may I ask everyone for their experience of UK Disability Allowance (yes, unfortunately my man is almost lame) - anyway, can you claim this when claiming Attendance Allowance? We are both claiming State Pension too.

Phew, again my apologies. I know some will understand but I ask the rest to accept that I am struggling very much, sorry.

 

[canary]

may I ask everyone for their experience of UK Disability Allowance (yes, unfortunately my man is almost lame) - anyway, can you claim this when claiming Attendance Allowance? We are both claiming State Pension too.

Disability Living Allowance is being phased out and is being replaced with Personal Independence Payment (PIP), but you cant get both DLA/PIP and Attendance Allowance. If you are claiming before you reach state pension age then you would claim for PIP now, and if you are claiming after you reach state pension age then you would claim for AA.

People who claimed for DLA/PIP before they reached state pension will continue with this payment when they do reach state pension age, but they cannot also claim for AA