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I feel so stressed and anxious

Suzi's picture

Hi here...I've tried other so called support groups on social media sites but someone was not really supportive and made me feel worse than I already do for some of my feelings so gave up but I'm really struggling again and just need to know I'm not the only one who struggles and that I'm not a total ars though I sometimes

Basic setup is me and my partner have lived together for about 5 years, we have a 3 year old and 5 month old together and she also has a 27 year old with downsyndrome and learning difficulties who.lives with us full time, SD27 has nothing to do with her other bio parent so all care falls to us 24/7. She has day activities a few days a week while we are at work and I always work from home 1 day a week where she is home with me....I'm currently on maternity leave so have her 2 days a week at minute and I also had her full time on my last maternity leave while we were recovering from covid times. 

There are a number of difficulties for me which I am struggling with and I think they are all building up little by little which unfortunately is resulting in me not enjoying being in my own home and starting to resent being around SD. Just to name a few....

1 - because she needs adult.supervision, direction and I guess parenting still 24/7 and we have no respite support she is with us all the time which means a her constant presence in my space is sometimes just too much for me to cope with and any activity I want to do with my 3 year old or baby or partner she tends to need to come along if I want to take 3YO swimming at a weekend the expectation is we all go... or when I go to mummy and baby exercise class I've had to take her with me.

2. My partner will not even entertain the conversation around long term plans for SD such as supported living or even just regular respite some weekends to give us some flexibility with our time and activities. If I try to bring up the future my partner just won't engage in the conversation...we need to write a will and make plans for the just in case .....God know how thats gonna go.

3. SD is by no means a really challenging person in terms of behaviour and to everyone around us she is endearing and lovable...(which by the way is really annoying as these people.dont live with her 24/7 or have the impact on their life daily) .I however see the full on refusing to do task required/asked of her and generally just not listening to instructions over and over and the general challenges of the day to day which is mentally draining and exhausting and frustrating. Unfortunately as time has passed its made it harder for me to see the positives in her as now pretty much everything she does just grates on me.

My partner is very supportive and will always have my back if SD has argued back with me etc and is a very good mum with clear rules and boundaries so I can't complain about just fells like I have no control over our future because we wont talk about it without her burying her head into he sand about it (which I get it's a huge thing to even think about) but i think i also have the right to know what our future may look like and whatbthe expectation of me is. I am more and more realising that I do not want to be a full time carer for the rest of my life. I have tried disengaging but it doesn't last long as life is so entwined. I have made a point recently of getting partner to swap days or arrange someone else to care for SD so I can spend some of the last of my maternity days meetings friend for coffee etc without having to take SD along. And I've refused to take her to football club on Monday evening....partner asked if I wanted to do alternate weeks but I have declined (feel a bit bad about it as my partner has to do it every week but I have no interest in standing in the cold watching her play and im trying to make a bit of a point about the need for more of a plan and support - though not sure she's picked up.on it to be honest)

I guess I just need reassurance that I am not the only one who feels like it as sometimes i feel like a terrible.perosn for feeling like this and any advice on how to disengage a bit in a situation where we in each other pockets and together all the time. 

Thanks for listening.

Winterglow's picture

I have a daughter who has Down Syndrome  and I can tell you that your partner is doing her daughter a HUGE disservice by sticking her head in the sand. Doesn't she think her daughter deserves to have a life too? What happens when she is no longer able to take care of her? The sooner she finds a nice group home/assisted living situation, the sooner she can start to actually LIVE. And the sooner you can get your life  back. What would she do if you weren't there to take care of her daughter? It's high time she started thinking about you and her daughter and less about herself.

My daughter (she's 21 ) is in a group home and absolutely THRIVES there. There is so much for her to do and enjoy - autonomy is encouraged,  too. She spends Thursday nights here with us so we can take her to her speech therapy on Friday mornings. 

She has a twin (neurotypical) sister. We don't believe that she should have to live her life caring for her sister ( this is essentially the role that your partner has assigned you merely because you are there) so we have set things up to avoid that. You can't just sit around and let "life" make the decisions for you, you have to plan ahead.

I can't give you advice on how to disengage other than telling her that she will find somewhere for her daughter to live, be stimulated and cared for or you will be moving out. You don't have to break up, but for your sanity you need something to change. 

In any case, you are absolutely NOTa terrible person for feeling the way you do so stop feeling guilty right now.

Suzi's picture

Thank you....that's especially reassuring coming from someone who has a child/adult with additional needs....I am fully aware that I don't have the emotional attachment or challenges that come with making such a huge decision so it very easy for me to say let's find a assisted living home but I am.midful not to belittle the greatness of that decision for my partner.....I absolutely believe she SD would do well in her own environment.....she is very independent in many ways and when pushed to be (she of course would sit by and let everyone do everything if given the chance but when she is with me we have life skills days for planning meals, sorting and doing her washing, cooking etc so I know she would thrive if encouraged)

Our younger children will never be reasonable for her as we have had that conversation and I do not think it is fair on them at all to have that expectation they are entitled to their own childhood and adult life and equally the chance to flourish in whatever they do so that is not a concern but the impact of having their 27/30/35 etc year old with them everywhere is something I think about. Currently they all have a beautiful relationship and all adore each other.

stepmom444's picture

Hi Suzi, 

You are doing the best you can and please please don't be so hard on yourself. Your partner is asking way too much of you.

I am a stepmom to  a 22 year old man with Down Syndrome and autism, he's in a government funded day program for 4 days a week and then with us every other evening and every other weekend.

Can your partner find a full time day program all week? You say she has day activities during part of the week. That should definitely be all week. Or failing that  your partner needs to talk to her boss and arrange to work from home so she's helping you.. that would be ideal. 

The day program my stepson is in runs from 8:30 am to 3:30 pm and is partially funded, we are trying to get more funding. He goes 4 days a week, and then his parents look after him alternating Mondays

You also need therapy I believe. And your partner does too. Try psychologist maybe? It has helped me so so much and doesn't judge. It has helped me say no to my husband regarding me not wanting to be alone with my stepson so much due to safety issues.

Also here is how I am trying to disengage and I am disengaging because I need to protect my mental health. It is so so draining week after week, year after year for 15 years:  Go into a bathroom and close or lock the door. Go up to my bedroom and stay there for one hour. When my husband is in the house and is there to look after his son, I will be going out for a walk by myself.

Just like your partner won't even entertain discussing assisted living, mine is the same, any conversation around group homes is met with anger from him, so look for ways to get out of the house or to another room if you can. If you can't get out of the house, find a bedroom and just stay there for an hour. Or try to get her to stay in her room more if you can and get her to watch movies 

I feel for you so so much and I understand how in the beginning it feels great to be looking after someone with Down Syndrome but over time you just want to get a big break, you want just space.. I completely understand. My stepson is around us all weekend, I wish my husband would enroll him in a special needs weekend social activity but he won't. 

Suzi's picture

Thank you for the advice....I have thought about therapy as I don't think anything will change anytime soon so need to prioritise my mental health and sanity so will keep looking into that.

I will definitely try and walk away more and taking some time for me. Maybe I'll find a hobby that involves not being at home Smile



M88's picture

I worked with people with Down Dyndrome in their own house so their families could have a life. What you are asking for is totally normal, don't feel bad please. 

There is this thing call "independence", and it is the main goal when working with people with disability, whatever lever you can reach. Your partner -as many others- is over protecting her daughter from the wold denaying her the "adult life" she could have. Even thought I am sure her reasons are the purest she is being selfish making you carry the weight of her decisions. If she wants her daughter at heme she should be able to look after her; if she can't do that then it is time to find other options. 

What is her level of intellectual disability? And social abilities? I have no idea the services you have around but assisted living is great, she would have the opportunity to have a life! And YOU deserve a life too. At the end of the day you are not her mum and you are not a carer and I don't think is fair on you that pressure and guiltiness.

I would put my ideas in order, do some research of services for her, ask her what is her plan for her for the future. Maybe write down what you want to say and just read to make sure you keep calm and say what you need as she might get defensive or might try to make you feel guilty...

Good luck.

Winterglow's picture

I agree.

OP, your partner really needs,to think deeply about why she won't discuss her daughter's future. Has it ever occurred to her that keeping her daughter at home might not be what is best for her? Ask her why she doesn't love her enough to plan out her future. 

FWIW, today, my daughter is in a shopping centre in a nearby city to buy her essentials and browse the clothes shops. No doubt, she'll add to her  (extensive) nail polish collection. Tomorrow she'll be going to the cinema in the afternoon after spending the morning tidying and cleaning her room. It's all organised by her home. She's surrounded by friends and guided by specialised educators. Oh, and she has a boyfriend.


Can you imagine how scary how things will be for her if something happens to your partner and her daughter gets stuck in the first institution available where she knows nobody? Because you have no rights to her, she would become a ward of the state. Even if you get married you still would have no rights to her unless you choose to adopt her.

Suzi's picture

I completely agree with the benefits of group living and will keep bringing it up. We will be doing our wills as have 2 little ones to consider too but I have no intention of offering to be sole carer if anything were to happen to partner so she will need to plan for that regardless. 

Suzi's picture

Tou are absolutly partner relictance comes from a place of love, protectivness and fear and anxiety about SD being cared for properly.

SD has severe learning needs but is very routine based and with repatition amd routi e etc can learn amd compelte basic daily tasks. Her social skills are OK and she is a very sociable person who like to be around others so will just keep encouraging partner to contact adult services and discuss support packages. 

Harry's picture

Bio parents are different.  But in your case. You are screwing up your kids life because of SD.  You don't get fun mommy and kid time .  Going to the North Pole to see Santa  as a family activity.   Just having a fun day.    Your DH must be made to realize what he is doing to his bio kids with you.   

Harry's picture

Bio parents are different.  But in your case. You are screwing up your kids life because of SD.  You don't get fun mommy and kid time .  Going to the North Pole to see Santa  as a family activity.   Just having a fun day.    Your DH must be made to realize what he is doing to his bio kids with you.   

simifan's picture

I work with people with disabilities. I supervised group homes for a long time. I can tell you horror stories of clients whose parents made no plans for their children's future. Parents sometimes die suddenly, often close to one another. I have a client whose dad who was the main care-giver died of a heart attack & mom died three weeks later of cancer. We have taken in people from boarding homes, homeless shelters, half-way houses, and nursing homes (at 34 years old) who had no business being in these places but they needed a place to be. These are the lucky ones who were found -  where someone called Adult Protective Services. 

It can take a long time to get funding to place someone in a group home. You certainly want to pick out one you like, in a neighborhood you like, & some are much better then others. 

Rags's picture

Don't punish yourself. You are not a bad person in this.  

However, your mate is doing their adult special needs child a diservice.  Though not all SN Kidults can live in a group home environment, it is that environment that gives them a progressivly full life.  In my first career I hired a number of SN adults from group home environments.  I attended a number of celebrations at those homes as a guest of my team and of the group home administrators I worked with regarding their residents working for my businesses.

Just because a SN kidult cannot live on their own and make their way in society unaided, does not mean that they cannot have a fuller life beyond the control and limits of their parents and family.

Your mate owes their special needs kidult, you as their mate, and your joint young kids commitment and engaging support.  I fear that with the kidult, the support is smothering and limiting what could be an active engaging life far beyond just what your mate can provide while failing to engage effectively as your mate and as your children's parent.

I do not have any special needs family members.  I did "work" in a SN camp when I was in my early to mid teens for a few summers.  Those attending camp were inspiring. Some were teens, some were SN adults who lived in various group homes.  What wonderful summers those were.  I was there as the guest/au pair of a good friend of the family who taught deaf ed and was our neighbor.  I watched his son while he did the camp director thing. My brother and his son were attached at the hips for the 4 years we lifed across the street from each other.  I was ostensibly there to watch both the younger boys.  I ended up being an unofficial Jr. counselor. I led hikes, kept my brother and the Director's son in check, and pretty much helped anyway I was asked or could.

I have some regrets that in my profession it is not safe to accomodate special needs adults for work opportunities. It is not safe for the SN individuals or others in the hazardous work environment.

IMHO your mate should engage the support of the State to get the down syndrome DD-27 the opportunity to have a life of her own.

Rags's picture

I hope that you find this to be a good place to vent, contribute, and to pick up some useful perspective from others who are living the dream of the blended family adventure.

Give rose

Harry's picture

People think about moving in to getter.  Should have talks, with pen and paper. [ I know really loveing] and discuss things as disable kids.  Where they are going to live, who going to take care of them.  What going to happen to them when reaching adulthood. Age.   Not like most of us going into a relationship where one person is thinking one way. [ you are just going to live there disabled kid and want to take care of them forever.]. And the other person is thinking very differently.  PMy SD became disabled at around 13.. unfortunately she could not follow basic rules. Like taking your medication so she ran away.  

'You must understand that the bio parent has guilt. They are guilty that they were part of creating the problem.   Guilty people act differently.   Most of all not all people can do second marriage and SP.  Doesn't make them bad people. Just can't do it.

ESMOD's picture

I'm not sure about the current timing for you.. but you both need to bring this all to a head and do your estate and future planning.

Yes.. you need wills.  And end of life directives etc.. 

It's also the time to bluntly put this to her.

Why do you not love your daughter enough to give her the opportunity to have a better life?  To learn to live independent from this home.. because one day, you and I will be gone... and she will have to manage.. and I'm not placing that expectation on our younger kids... We have to love THEM enough to not make this their responsibility.. to become resentful.. all they should have to do is love each other as famly members. 

What will happen when you die? period ? it's going to happen.. it could happen later today.. what do you think your daughter's transition will b e like without YOU to help her through it?

Suzi's picture

Yes we do need to have some serious conversations about the future and make some plans... 

Really my post was about sharing the things taht are stressful and seeking some kind orlf reassurance and maybe ideas on how to manage my own emotions during this time.

It is a huge thing for my partner to have to decide to do and the best way and time to do it and complicated by her family who have very strong opinions on what they think should happen I'm sure.

We have a little way to go....I just need to stay sane in the process.

ESMOD's picture

I think we often are most stressed when there are situations where we feel we have little control.

I'm not sure if you are relying on your partner more financially.. but it can often put step parents in a poor position where we end up "putting up" with more caregiving for stepkids to balance contributions.. or it becomes an expectation from the higher earning spouse.

The difference in your situation is that you have an adult that you must care for as you would a child.  It's normal in families for not every kid going to every thing.. you certainly could take your child out on their own.. and your partner could stay home with the adult child (if they are unable to stay alone)..  You should be getting respite and that may mean you being more insisting that you have time to take a solo walk.. run some errands on your own.. and your spouse will have to deal with that.

I think it's key that you try to approach any discussions as being in her child's best interest.. and that you don't dislike the child.. you also want the best for them.


Suzi's picture

I completely agree with the link between stress and not being in control and that is defo a factor for a step parent the bottom line is I don't get to make the decision about SD care in terms of bigger picture however it impact me on a daily basis.

I don't rely on partner financially as I'm actually the bigger earner but as I'm on maternity leave and my job offers flexibility to work from home a couple of days a weeknit has just worked out logically that I'm with SD. I have been asking partner for last couple of years to make other arrangements as its taking its toll on me, particularly while.ive been on maternity leave as its impacted my time to do stuff for and and with my baby. I feel that it is brewing for a bit of a blow up at some point as I just don't think SO really realises how much I do sometimes....and hasn't thought about the impact on me at all......its just because I'm here and available that I've become this role almost. However when I return to work I will be going into a new role as been promoted while on maternity leave and I will no.lpnger be working from home at all and I've reminded SO frequently over last couple.of months thats she meed to sortnout care and even offered over and over to ring adult social care and ask for a meeting and request respite support but SO just.says she will do it...still nothing yet so will see what she does.......but i am stepping back  as not my problem to resolve.....and I won't be able to be at home to fall back on.

SO is home in evening and weekends so I will make a point of going out at these time either find a hobby for me or take my kids out without SO and SD......we always do everything together as a family which is obviously really lovely for all the kids but I feel like have gentle and sometimes direct conversations about respite care is falling on deaf ears so maybe need to just go off and do my thing ity my little people so I don't feel liek I'm missing out...the rest is up to SO.

Suzi's picture

Sorry for all the typos....middle of the night, can't sleep and fat thumbs....hopefully you can piece it together. 

Harry's picture

Time for a change with SD.  As group home. Weekends free.  Weekends get a ways by yourself . Vacation by yourself  adult play time.   OR  unfortunately start making your exit plan.  Two woman as well as two men. Can not live in the same home.  You need time for bonding as a family with your babys

stepmom444's picture

Hi Suzi, 

Also maybe ask your partner what are her rights as a caregiver, can her employer reduce her working hours...

I am going to hint at this with my spouse... hoping he will ask what he's legally entitled to ... like flexible work hours 

Harry's picture

He know you don't want to take care of SD. He wants SD to live with you but does nothing to help out.  He knows you want baby and me time. He doing nothing to take SD out, of the home. Or to adult day care.   Him doing nothing is the easiest for him.

Time for a talk with DH. Your needs must come first.,  You need a weekend away with him and baby alone.  He needs to find SD either adult day care. Or get a babysitter in for SD. Or SOMETHING   You can not will not live this way