Overwhelmed with responsibility over mums care.I have a huge choice to make. Anyone else had to make this choice?

I went through this with my mom. She lived out in NM and none of us (8) lived near her except for a niece that was abusing her verbally, financially and having her raise her 9 year old and often left her two under 5 year old children for weeks on end with my mom who has dementia.
I lived 11 hours away and drove to her home once a month to check on my father when he was ill. It was very stressful for me to put my life on “partial” hold for 4 years while he was ill. We did have in home care for him for part of the day which helped to watch over my mom for several hours too.
When my dad passed away we couldn’t leave my mom at her home alone because of the niece and we certainly couldn’t afford to hire someone 24/7 to protect her from her. So, I stayed there for a month and then I took my mom to live with my brother. My other siblings knew she couldn’t live alone but were still in strong denial about her diagnosis of dementia.
I have found that when they are in the early stages of dementia that a superficial conversation can make them appear to be quite all together. Yet, when one digs deep it becomes apparent that she isn’t quite all there anymore. I have several siblings who are still in denial. A couple of them haven’t even asked a word about her since we removed her from her home in February of this year. Sorry…I digress.
After several months at my brother’s house my sister-in-law who is extremely OCD (she takes 2.5 hour showers) couldn’t handle my mother anymore. I wasn’t aware of my SIL condition prior to my mom moving there. My brother threw up his hands and said mom needed to go into an assisted living facility.
I am POA and I live 8 hours away from him. Since my SIL didn’t drive, my mom wasn’t being taken care of the way she should have. She has had a UTI for 3 months and was never taken back to the doctor. Things like that.
In order for me to eventually qualify mom for Medicaid I would have to drive that 8 hours to do paperwork, check out facilities, etc.
I decided that it would be much easier for my sanity to have my mom closer to me and get her the care she needs and not just toss her into any old AL facility that they chose. She has been here for a couple of weeks now and I don’t regret the decision. Yes, she is a lot of work here. But, I know that she is being taken care of. And, when she does need to go into an AL Memory care facility, she will be close by so that I can check on her often. She wouldn’t have even seen anyone but maybe once a month if she were near my brother.
I have never had a wonderful relationship with my parents but I did do what I thought was best for them both. Moving her out of her house was very traumatic for her but we figured the sooner the better. She is adjusting and feels much more comfortable her with us rather than with my controlling SIL.
I’m sure in a few months the stress will once again get to me. I’ll deal with that when I need to.

Kazaa, I cried often when I realized that the situation at my brother’s house wasn’t going to work out. I felt, Why Me? I have 8 siblings and only my brother offered to take her and that was with not much consultation with his wife my SIL. My other siblings figure that since I took care of my father’s issues during the past 4 years then I should be able to take care of my mom’s issues now. I think it is bullshit, but it appears that there is always one in a family that steps up and it looks like it is you and I.
I know that my mom is going to go into an assisted living facility/memory care facility. I also know that her staying here isn’t long term. I have looked at several in our area and I know what the financial situation is. All I can say is start checking them out. Know what is ahead of you. I think that the unknown was what frightened me the most. It seemed like a daunting task ahead. But, once you have a plan in place and realize that it isn’t forever, at least it isn’t in my case, then it isn’t as overwhelming.

I can only give you a big virtual hug. Take care.

Thanks spiritspy so glad the MAJORITY of people understand on this site shame we have to deal with the odd martyr!! Wink! hugs to you and totally understand how youre now happy and its worked out for you and your dad.

Kazzaa,

In the end, only you know what's best for you. I will share part of my thought process in deciding to move my Dad. He was living on his own and the closest child was a 5 hour drive away. We decided to move Dad sooner rather than later as it seemed that the disruption of a move would get worse and worse. I tried to give him as much control over the process as possible. That means, he got to decide whether to move close to me or close to my sister. Notice that not moving wasn't an option on the table. We went to visit every senior living option in the area where he was moving. He got to choose which was best. In the end, he wasn't excited about the move. However, he got choices along the way that allowed him to feel some control in the situation.

I considered putting my life on hold and moving in with him. That would not have been healthy for either one of us. I would have been miserable where he lived and as a result would have been resentful of being there. If I was stressed and tired, that resentment was bound to show through. That would not have allowed me to do the hard work of care giving. Also, like has been mentioned earlier, Dad is much more social now than he was when living on his own. I stop in and see him almost every day. Because I am not stressed and resentful, I am able to take the time and take him out for fun activities. Also, I realized along the way that as much as I would like to be that infinitely patient caring daughter, I am not. I can be patient for a few hours at a time, and then... I get a bit cranky. That would not have been good for either of us.

I hope there is a nugget in there that might be helpful.

Take care of yourself.

Actually madeaa youre wrong there is assisted living here in ireland they are usually attached to NH the only one i know of is Moorhall lodge in Ardee where they have a little house and 24/7 care this would be ideal for mum but she went beserk. Parents want thier children to look after them and thats that there is no arguing with them until thier mind is so far gone that they cant argue.

Madee I do get your point but its not as easy as 123 get her into a homecare there are waiting lists etc.... she is NOT ready for a home yet? Here already its a year for the home we looked at and one of the best so you see my dilema the only real solution is she moves with me and i care for her as much as I can handle until shes ready for a NH. Ive suggested AL and she refused she still is convinced she can manage here alone she is entitled to 3 half hour care a wk we cannot afford in home care at $26 an hour also she has no friends or neighbours here so nobody except me.

Jessie B.... we live in Ireland not USA, you can google to your hearts content, there is NO concept of assisted living, independent living in Ireland. The world is large and you have no idea what it is like here in another country.

Sometimes, I think you really miss the point.

Thanks guys i feel alot better now. I have decided that my mum is going to decline whether shes with me or not. My biggest fears were to force her against her will into NH so I am putting my foot down when family arrive end of month that she moves with me and I look after her until she gets worse then a NH near me I am quite happy to look after until I can BUT on my terms i think this is the best she will not manage here on her own in a 2 story house and my bro was here for an hour today and SNAPPED at her as she didnt understand something I was fit to burst. Its ok for me to snap when shes being unresaonable with me but im here 24/7 if you cant tolerate her for even an hour then you have issues i think this made me realise that my poor mum really only has me to do the right thing. I think my bro is in denial about her illness and cant handle this. He was always an introvert and cant handle emotions BUT ive told them all that they need to be a bit patient with her now and not snapping at her for very little reason. anyone here will know how hard it is to keep your kool but when we snap its usually with good reason exhaustion for one.

I want my mum near me as if she goes into NH here then ill be too far away and i want to see here everyday im the only daughter she has in ireland that cares my other sister who lives only 2hrs away hasnt even rang me when i sent her an email about mums diagnosis. am so angry with her how can you not care?? shes our mother and did what she could to bring us up alone how can you turn your back on her now when she needs us the most. Selfish siblings i will never understand?

My other brother and sister abroad have agreed that mum either moves with me or NH I am not giving up my life to live in a one horse town with no social life.
My mums geriatrician has asked my mum to move into NH permanently she laughed she said no way to be honest I dont think the professionals cant decide for us its all down to family when this happens.

I really have to think of my life ive done this for four years had a SHIT time trying to get mums diagnosis on my own with no help from anyone except the internet and this site and I was right she has what i kept telling everyone i want some happiness in my life.

So the doc thinks it will be the start of her decline - does he know that she has been telling lies to the neighbors? This paranoia is very much a part of middle AD!

Memory care has worked beautifully for my mthr. Once she was settled in, she LOVED going to the Bingo games, church services, the music productions, movie night, even meals with other people! She was finally social again for the first time since she retired. Not one of the other old folk complains when she tells them the same story, and she readily excuses them telling her theirs - oh, he does not remember he told me that before, and he told a little more each time, so it was very interesting is what she says!

Your mom would love a Memory Care home. I hope you can find one quickly to save your sanity!

They do have many IL, AL, and NHs in Ireland, too. I googled and saw many things in the Dublin area.

you are not explaining that you are in Dublin, not USA another world my friend.

Debralee was so right. The doctor was unfair to say what she did. You will not be the one responsible for your mother's rate of decline. People with dementia often have to move, because caring for them can be so difficult. They may decline when they move, but as Jeanne said, you are as important as your mother. This could go on for years, so you have to decide what is best for everyone involved.

As strange as it seems, most people around here are not hands-on caregivers for their parents. Most of the elders around here live in senior communities. Some are in IL, others in AL, others in NHs. People on this group are actually exceptions to the norm from what I see around me. Kazzaa, you are not unusual in the way you feel. Probably most parents don't want their children to sacrifice their lives, and probably most children are not able to. Follow your own instincts here about what is best and give the statement of the doctor very little weight. There are so many options out there.

Kazzaa" get your mother evaluated by a specialist. Get a Geriatrician to see your mother and evaluate her. Get a "common summary assessment" done. My mother's GP said she was just fine, just old age, well he does not know shit from shinola. His speciality is sports medicine, and he should stick to ball players of rubgy, he just does not have the medical expertise in this area. When the geriatrician specialist determined his medical diagnosis, he said "I am surprised, but he knows best" great comfort, thanks for the mind f**k. Anyhow, I got her into a rehab for respite and from there I got things working. You have to apply for the fair deal nursing home scheme. One she is approved fine a place suitable for her. I got my mother through an act of "God" into a place suitable for her, it is the very place my father was in. It is Catholic and fits her to a tee. She is surrounded by Catholic culture, and believe me this is great for her. You can not do this by yourself, believe me I tried, it does NOT work. Get her into a structured environment that is most suitable to her and do it now, she will get worse worse worse. You will place yourself in peril and I just got to the point of this woman is a danger to herself and me, she not only continued to talk nonsense to the neighbors, I am poisoning her, I am abusing her, no more mom. You have to go and have others take care of you, I still have neighbors leering at me suspicion!
sly and guess what I am the good guy. You have to make things happen now, or else, the prognosis is not good for youl

What is your mother's imput on your dilemna? Is she willing to relocate with you? Or agreeable to in home care, if affordable? If your mother is not ready for a NH maybe assisted living or senior housing. Your mother's decline should not be conditional on your choices. If something happened to you, she would have to move to a different living environment. If you can manage to find a way for your mother's care other than yourself then do it and live your life for yourself!

Hi, I can really sympathize as I am also living in a town I have never liked. Luckily my parents don't have severe dementia. The only thing I can suggest is to see if you can find an geriactric social worker (local Dept of Social Services) to help you decide what to do - and the suggestion of a home specifically for seniors with memory problems is a good one. Getting some in home help is a good idea too, if this is something that you can afford. Good luck to you in an unfair situation.

I have not had to made this unfair choice, so keep that in mind as you read my opinion.

Her doctor may be correct that moving Mom now would cause her to decline more rapidly. Staying with Mom is causing you to decline rapidly! You are no less valuable and worthy than your mother. It is OK to consider not only Mother's needs but also your own.

If she is "not ready" for an NH, perhaps a memory care unit would be more appropriate, ideally one with a whole range of care levels so that she would not have to be moved again.

I understand that vascular dementia shortens the expected life span considerably. While ALZ can go on for decades and Lewy Body often lasts 8 to 10 years, vascular dementia seems to progress faster than that, lasting only a few years. Obviously these are generalizations and no one can say with certainty how long your mother may live. Have you discussed her prognosis with her doctor?

Knowing that this won't be forever, could you tolerate it if you had more in-home help? Would that allow you to have more of a life of your own? For example, if Mom had a hired caregiver during the day so that you could have a job and/or some personal time, would that relieve some of your stress? I realize that you don't like the town you are in, but knowing you won't be there indefinitely, could you make the best of it?

Any chance your brother could be of more help? Have you had a heart-to-heart with him?

You are right that this is not fair that it all falls on you. It would all fall on you if you were an only child, too. It is definitely and completely unfair that your mother has this awful condition. Life is not fair.

If you decide you have to move out, first get your mother situated in the best care center arrangement you can find. Contact her often. Visit when you can. Continue to advocate for her good care.

If you decide you are willing to stay until she dies or perhaps until some interim milestone, such as she is ready for NH, please spend the necessary effort to arrange for help. Do not continue to do all the hands-on care alone. Also be sure to have some respite time.

You have talked to Mom's doctor, which is great. I suggest you talk to some other professional as you struggle with this decision. A medical social worker might be a good choice. You need help finding out what resources are available, both for placement and for in-home care.

I am so sorry that you are facing this, kazzaa. Hugs to you.