Does every family fall apart over this?

HelenInBC

Registered User
Mar 23, 2013
242
0
I'm sorry in advance, because I really need to unload today and my poor husband is getting sick of hearing about it I fear.
My mom was diagnosed with AD about 5 years ago and I've been managing things since then, with minimal help from my 4 siblings. Since last summer my mom hasn't been able to be alone. After trying many different strategies, including residential care (which lasted only 4 days) my daughter and her boyfriend offered to move in with my mom to care for her. My daughter is going to school part- time, and at the time her boyfriend had just been laid off from his roofing job. Between the 2 of them, someone is always with my mom. They don't leave her alone. As you can well understand- it's quite challenging for them, but they care very much for my mom and do the best they can. It's been a huge learning and growing experience for them as well.
When they moved in, my siblings and I discussed the terms (how much my mom should pay them, what days and hours they could have off, etc) and we agreed they should have some scheduled days off per week (we decided on 2) and several weekend days off per month as well. Between the 4 siblings who live within an hours' drive, I suggested that we would be able to visit mom ourselves on some weekends to let my daughter have a break. Unfortunately, I work 2 out of every 3 weekends, so I have limited ability to do this. My brothers and sister have all seemed to pretty much washed their hands of the situation since my daughter moved in. Asking them for help is like pulling teeth. Every time I ask for help, I'm told they are too busy or it's too difficult for them for whatever reason.
Last night my daughter wanted to attend someone's wedding. In fact, she and her boyfriend had agreed to "work" at the wedding for someone they know. They would be paid to serve or something like that. This was agreed to many months ago, before they moved in with my mother. We asked my siblings if anyone could come and stay with my mom, or take her to their home, for the evening and possibly overnight since the wedding was likely to go late. My sister agreed to take her in the afternoon, but wanted to bring her to my home to stay over because "she doesn't have the room". She has a 3-bedroom home and one child. I suggested could the child sleep somewhere else and let my mom have her bed for the night. Apparently that wasn't going to work for her, so she said she would come and stay in a hotel near my mom's house and asked if my mom could pay half. I assumed the plan was to take my mom to the hotel with her overnight and I agreed. I just wanted a solution so that everyone was satisfied.....well, then I start getting text messages...first from my daughter saying that they weren't taking my mom to the hotel- my sister was going to stay with my mom until they returned from the wedding, then go stay in the hotel herself. I guess we had a misunderstanding, but that annoyed me right away. Then, my sister starts texting me and saying she resents being asked to take care of mom while my daughter is out making money somewhere. She's saying she thinks it would just be better if mom was placed into "professional" care somewhere and that it would be better "for everyone" that way.
She's angry because she thinks I am always judging her and that she and my other siblings are always letting me down and that they don't do enough in my eyes. She is right. I think they aren't willing to help and it makes me angry! My mom wants to stay in her own home and I'm trying to help her do that for as long as possible. I just feel like my family wishes I would just place her into care so they can stop feeling guilty for not helping. They think I am taking advantage of my mom's situation to provide my daughter a "free" place to live while she's in school. I often wonder if they even realize what it's like to care for someone with dementia 24 hours a day!

Ok, rant over. I'm just exhausted by all of this. Sick and Tired :mad:
 

Noorza

Registered User
Jun 8, 2012
6,541
0
I am afraid that you can't change other people's behaviour, you can only change how you react to it. This was the lesson I learned the hard way. If they don't want to help, they won't and while you are angry they're oblivious.


Have your daughter and her boyfriend had carers assessment done, this can identify what their caring needs are and how to access outside help.
 

legolover

Registered User
Jul 25, 2011
166
0
West Midlands
How old are your daughter and her boyfriend? It's a big responsibility for them to take care of your mum 24 hours a day.
Do you live in the UK? Or when you say "school" do you mean university?
 

HelenInBC

Registered User
Mar 23, 2013
242
0
We live in Canada. My mom has had many assessments done and we have accessed different care services. Unfortunately, the services that are provided for at-home care here aren't really helpful for someone at the level of dementia that my mother has. They can offer visits for assistance with dressing and washing, or drop-in visits to make sure a person has had a meal, etc. They offer no companion type care to keep a person safe. We have taken advantage of a day program that my mom attends once a week for 5 hours. We are self-paying though, because she is still on a waiting list to have it paid for.

My daughter is taking college courses to qualify for the Nursing Program. She takes one or two classes each semester and this will last until next Spring. She will hopefully be admitted to the Nursing Program at college full-time in Fall 2015. In the meantime, she must complete certain college requirements, so she is working on that.

She is 24 and her boyfriend is 21. Even though it is challenging to care for my mom, they are both managing quite well. They are great at using humor to break the tension and distraction to redirect my mom when she starts obessessing about things. They just need some down time and I think family should be able to chip in. I guess I was wrong. It's just so discouraging that they don't try to help or seem to want to. I get so tired of trying to keep all the balls in the air myself. At least I have my daughter to help and my husband is very supportive too.
 

Chemmy

Registered User
Nov 7, 2011
7,589
0
Yorkshire
I'm afraid I agree with Noorza on this. It's often said on TP that no-one can or indeed, should, be forced to be a carer if they don't want to. Whilst I understand your anger, I would defend their right to say no.

.
 

sistermillicent

Registered User
Jan 30, 2009
2,949
0
I also agree that you cannot expect family to do what you want them to do when this is clearly not their idea of how things should progress. I suggest getting a paid carer in to give your daughter and her partner a break. This is much more reliable than hoping someone will be nice enough to do it.
 

HelenInBC

Registered User
Mar 23, 2013
242
0
I agree with you. I think hiring more paid carers for the down time is the answer. It makes me sad that my family don't want to help and that they would rather see her in a care home. Eventually, that is what will happen. I was just trying to give her a little longer at home.

Thanks for your help. I think I need to stop trying to organize others and just take care of things and get on with it like I have been all along.
 

copsham

Registered User
Oct 11, 2012
586
0
Oxfordshire
I was in asimilar situation too. Three sisters doing virtually nothing and a brother commited to visiting our mother. The vase majority fell on me. I take a different stance on this. "The invisibles" may well have had a different family experience than you. They may be fearful of their own feelings and therefore not want to get close. They just might not have giving personalities. They may well suffer from guilt as a consequence. I just gave in to this and had no expectations which is weird and not how we all start off. In the end it was me that had fleeting moments of happiness with my mother not them and this now is enough for me. It does take a change of attitude which does gradually grow it seems.

I wish you and daughter/boyfriend well in this long path.
 

missmarple

Registered User
Jan 14, 2013
204
0
Hi Helen - I'm also a. Helen! While other posters have wisely pointed out that more cannot expect others to behave as one would want, I also think your resentment is understandable.it's a different situation,but I am basically getting the same reactions from my dad's siblings. He has dementia, is at home with my brother, I visit once a week and have organised all aspects of his care AND of my brother's ( he has. Mental illness). Dad's sister lives abroad, makes vague promises about helping but dos not. Lately she has taken to ringing up and demanding to know what is"being done about my brother" ( as if there was an easy solution) and saying my father should be in Residential care ( we tried, he went in to meltdown and the home said they couldn't cope). His brother makes promises of financial assistance which never materialise and another sister said she was coming over from Ireland to visit and on the day just never turned up. During my aunt's latest call I told her I found her attitude intrusive and wasn't prepared to put up with it anymore, she hung up on me. So much as they are all entitled not to offer help, be supportive etc etc I still find their attitude is lousy. I am not surprised you are disappointed by your siblings and I also think there is a tendency to want the problem to be "tidied up" by the person going into care. The problem with that is the person concerned seldom wants that.
 

Noorza

Registered User
Jun 8, 2012
6,541
0
I agree with you. I think hiring more paid carers for the down time is the answer. It makes me sad that my family don't want to help and that they would rather see her in a care home. Eventually, that is what will happen. I was just trying to give her a little longer at home.

Thanks for your help. I think I need to stop trying to organize others and just take care of things and get on with it like I have been all along.

The truth is that you can't, it would be lovely if every family were like the Walton's, but mine are no Jim Bob's and I'm no Mary Ellen.

May I also suggest that your daughter has a contingency plan, if she doesn't have one already in case there is a crisis. I have found that half of my family's reactions were totally unpredictable.
 

Chemmy

Registered User
Nov 7, 2011
7,589
0
Yorkshire
I also think there is a tendency to want the problem to be "tidied up" by the person going into care. The problem with that is the person concerned seldom wants that.

Sometimes those on the outside, ie not involved in the daily grind, can view it more objectively.

Moving into 24/7 care gave my mum (back in 2005) and my MIL (just in the last week) a much improved quality of life. I certainly have no desire to be looked after in the future by a resentful family carer.
 

Tilly Mint

Registered User
Jun 14, 2011
21
0
You hit the nail on the head when you said that relatives want us to put our loved one into care to save them feeling guilty for not helping out.
I've come across that in my own situation.

Now hardly anyone visits. Nobody has ever offered to sit with mum while I go out for an hour or two. I think I'm avoided now precisely because people don't want to be faced with their own failings.

I've not had your situation because I was living close by before mum became ill and it coincided with a breakdown I had so it was best for me to become mum's carer and I think the situation has worked well in that regard but I do so miss my sister, brother and their children.
 

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