How do you manage taking care of your children or... - LUPUS UK


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How do you manage taking care of your children or grandchildren?

Titters profile image

In the last 2 years I’ve been blessed with 3 grandchildren. One of them is barely 7 months. I take care of her one day a week and on weekends usually one day or both days with my husband. With Covid now, in my area of the States, daycares are folding because babies are getting Covid. My granddaughter being one of them. So far she’s been a real trooper although difficult to get her to eat much as I’m sure her sense of taste is gone as her mother’s has/ she got Covid despite being vaccinated. Finding help for childcare is maddening as working mothers are all scrambling to find nannies and sitters. My daughter is a veterinarian and her husband does travel. They are excellent parents but they are unable to stay home with children. And now Covid.

I want to help so badly. With fatigue being my biggest issue can I? How do y’all do it?I’m very tempted to up my prednisone to cope with it and help. I don’t feel obligated to help. I adore her. Also I do have a spine condition which is limiting. When she was very small I was able to put her in a carriage and wheel about the house and yard. Does anyone have advice on how I can help? How do y’all do it? I know handicapped parents do it. How can I be a caregiver/grandmother?🙏🏻👶

20 Replies

You help by understanding their difficulties and supporting them and helping out is just a bonus. It’s a toughie as you’re not well yourself but reality is you can only do what you can do, and we will always yearn to do what we can’t always do. You’ve got to take care of yourself also snd if that means you can’t do more , so be it, or you may make it so you can’t manage to have them at all. I have days I can’t manage all to do for my teenage daughter at home, it’s hard , no two ways about it but we just do what we can do. Your daughters responsibilities are not yours no matter how much you’d love to help , I adore my kids too but can’t do the impossible , and yes it upsets me at times but I can’t change it so learn to do what I can when I can,.Everyone’s situations are different and coping is too, you can’t weigh yourself up against what others can do , it’s what you can manage , I wouldn’t up medication for that purpose,Taking care of you will help take care of them 🙏🤗

Nannies and babysitters are a solution that although costs much more work well through a pandemic and would allow you to still be the grandma rather than a primary caretaker. If you take over the child rearing part of daycare you should be prepared to say no and also discipline your charges like you did as a mother. This really changes the relationship your grand children will have with you and not in a great way.

I helped raise three nieces while my daughter was between 4 and 10. I stopped four years ago not because it was hard work for terrible pay ( which it is!) but because I felt my relationship with my nieces was being jeopardized. As they were aging I could not be the fun aunt I wanted to be if I also wanted to help ensure they were growing into decent people.

It is your daughter’s or son’s turn to parent for you did it already. If they can not make sacrifices like less car payments, downsizing, less eating out etc to live on one income or work different shifts and job share parenting they should look to hiring a nanny or maybe a stay at home mom who can babysit for them whilst raising her own child at her house.

Being the nanny to your grandchild comes with a lot of work, low pay, demands and resentment often. Your daughter might resent the way you are raising her kids, you might resent her redirecting how you are raising your grandchild. Your daughter might be heartbroken when her child prefers you and you might be heartbroken when a preschooler screams they “Hate you” when you say no they can not use sharpies on your sofa. Stay in the grandma lane it is such a smoother ride.

Titters profile image
Titters in reply to Roarah

Thank you Stiff and Roarah. You have given me a perspective I had not thought. Right now with Covid crisis in New Orleans, I’m trying to just get her in a safe place. They are looking for nannies and other mothersAs you suggested. I know for certain I could not help indefinitely. It would be temporary as Dr said after 3 months she can get it again. I do not want to raise her or any of my grandchildren. I guess I’m looking for some out of the box solutions to care for her temporarily. My kids are doing what you say. Cutting edges in as many ways as possible to care for her. So in no way do I feel put upon or resentful. In fact, they don’t

Want me to be the one! The other grandmother works full time. And other close family members as well. I am not

The mom I’d like to be but I’m the only one at home. What kinds of things do you do

That help you cope with your energy?

Thx again. Oh. My answers are sporadic today as I’m in and out of my garden between heat waves😊

Maddymay65 profile image
Maddymay65 in reply to Roarah

Roarah, morningI know your advice was for Titters but Just wanted to say i like you perspective , so many grand parents i know are know are the grandchildren caregivers and whilst it might be nice it does change the relationship. Such good sensible advice and i love the sentence " stay in the grandma lane its such a smoother ride" . I dont have grand children yet but i do struggle daily with fatigue and will remember this advice. And Stiff19 your advice also invaluable "taking care of yourself will take care of them" , again so thoughtful, Such a wealth of common sense, compassion and love on this forum, thank you M x


The toughest part of managing a health condition is the fear of loosing on things you cant do. Please concentrate o. Things you can do. I cant imagine taking care of a small child for a full day is one of the things you can do, but maybe 2h max or even 1 hour max you could negotiate. And not on a schedule either. It has to be impromptu because you never know how you will feel. I personally coudnt imagine taking such responsibility. I don't think it would be good for any party.

Titters profile image
Titters in reply to Tanitani

Thank you for answering. You are right. I’m not able to be a person that can plan

A day ahead with confidence. Knowing this,

I’m trying to think of solutions that are different. One idea I have is watching her

With a friend who can be counted on and allow me to take a nap which I do most days.

I’ve tried to make it through a day with no nap and it’s not easy as the day goes on.

I appreciate the honesty that people have

Offered here. But I’m looking for solutions;

Coping mechanisms. I know there are parents here who must have children. How

Do they do it? Oh. I just want to stress 2 things. One is Covid projection for next 3 months here is dire. Two is daycare

Is collapsing. Our state I believe still has the most Unvaccinated population. We literally are worse off than we were a year ago at this time. Thx for listening😊

Roarah profile image
Roarah in reply to Titters

I did it and still do it because I am their mother. I stopped doing it for my nieces because a job is a choice. To maintain energy and family expectations manageable I keep a strict schedule which when the kids were little included meals, learning activities and naps at the same time everyday. Dinner and bed times now with school age kids is still very consistent. I always sleep from 10pm to 5:30am, eat only between 9 am and 7pm and walk every am and pm for thirty minutes. I eat tons of fiber daily and meditate daily and see a therapist weekly.

The isolation, loneliness and depression that being an at home caretaker of very young children is the biggest energy sapper! I work at a school now 7 hours per day 10 months per year. It is so much easier than when I was a stay at home child care provider and mother!

Roarah profile image
Roarah in reply to Titters

Also want to add quality daycare was collapsing in many ways because the caretakers are underpaid and stressed and tired of having to work so hard for so little.

I have a six month old grandchild. I can only manage a morning then I'm shattered. I feel guilty but it would be slightly dangerous looking after a child when you're exhausted. My daughter knows half a day is all i can manage and makes other arrangements in the afternoon. Its a good compromise and i feel I'm still helping. I still work so i only do a few mornings a week. I'm sure they appreciate any help but you have to be realistic with serious health issues as you need your rest as well. Grandchildren are such a joy its hard to say no, i know.

Thank you dg70. That is a good solution. I’mGoing to consider it. Have a great day

I would think about how fit and well you want to be in the future too so you and your grandchildren can enjoy quality time together as they grow into little people. If you over tax yourself now that will be harder to achieve. You say you’re looking for solutions, there isn’t one and in any case I feel it’s your daughters role to provide the solution to HER child care problems. Sorry to be harsh, I’m a grandma myself and understand x

It was never my intention to initiate a role for myself as caregiver and grandmother. My lupus and other autoimmune diseases

Were left badly undiagnosed as I mothered

My kids. I was younger and did my best and it was hard and I devised some solutions

To counter my fatigue and other symptoms.

Whatever I can do to help in this situation

Of Covid I’d like to contribute. Also my family understand very well and help me

All the time.

Upping the prednisone has its own issues. My bones are very soft due to the number of years that I have been on Prednisone. My former doctor minimized its difficulties to get me to take it. He kept saying that he was giving me a form that did less damage. All forms do damage. Just saying.

Titters profile image
Titters in reply to Fighting

Thx. So how much and how long did you take it, if I may ask? For one year I did various doses to enjoy my kids’ weddings. Now I take 3 mg a day. I agree it is not a good solution.

Fighting profile image
Fighting in reply to Titters

I've taken as much as 60 milligrams. This all started when I was 36 years old. Doctors did not know what to do. Then I had a husband who was not understanding. He always had to be the center of attention. I had my first child at 29 and my second at 34. It likely was the stress of the marriage that switched the lupus from discoid to systemic. He kept needing another degree, certificate, better home, become a priest, etc. My younger son committed suicide when he was 23. The older one is now 42 and diagnosed with a major mental illness. I typically said after his 2nd marriage failed, my kids basically raised themselves. I take 4 milligrams a day and Plaquenil every other day. I'm 70 years old and had some seizures beginning at 64 so I take Kepra 200 milligrams. I am not allowed to drive. My kidneys failed when I was close to 49 and took one round of Cytoxin, once a month for 6 months.

Titters profile image
Titters in reply to Fighting

Thank youFighting for wise counsel on prednisone. I’m sorry it’s been a tough road for you and your family. ThankYou for responding. ♥️

I am now disabled and cannot help with my 2 youngest grandchildren like I did for my 2 eldest. Practically brought up my eldest, who is now nearly 18, for 3 years from the age of 6 months and his sister for a year as my daughter had severe PND and was hospitalised. The thought of doing that now, I'm 67, no never.. Due to not being able to help I fear I am missing out on so much. No quality time with them.

I feel so angry with my body and angry that my own children just do not understand. I feel so jealous of the in laws, a married couple, who can drive (I am unable to due to fainting etc), they take their grandchildren on holiday, have them for the day etc etc.

I am alone and now live in a retirement complex. My life is empty without seeing my children/ grandchildren. They just do not understand that mum is poorly.

😞Sorry for the long post but I am one unhappy Grandma. 🙁

Hello Grandma24and1, I’m saddened byYour post. And I’m also in awe of your courage to answer a question so deeply.

Some may say it takes no courage at all

Since this is a safe place to be anonymous.

I don’t believe that. The power of your words will touch many who read them. We

Raise our children with a dash of expectation that they will always love us and cherish us as we squeeze kisses out of their little faces. And the incredible reality

Is we, their “mommy’s,” are sometimes cast

Aside. Sometimes for bits of time and often

For great lengths of time. Maybe forever.

I have several children. I hope it makes you feel a tiny bit better to know that I have

A child, grown now with children. The only one who doesn’t come around and I have no

Relationship with the children. It’s a deep

Sorrow as yours is. The other Grands see

Them regularly. And this particular child is

Very clinical; unemotional regarding my illness(es). This heartache, like yours, I’ve accepted as much as I can. It will never go

Away entirely unless said child comes around to have an honest, open adult friendship.

You said that you are 67. To me, that is still

Young. Can you taxi to their house? Do they

Live close? It is never too late to write messages on cards and put them in the post.

Have you expressed to them how much

You miss them? Do you have a cell phone

Of your own with grandkids number(s) so

You can text or FaceTime? These suggestions may seem ludicrous. The hardest part is reconnecting. I hope you

PM me. This is long. But I believe there is

Hope for your situation ♥️

Hi Titters! I live with my three grandchildren and daughter and son in law. Master 13, Miss 8 and Master 5. It’s the only way my daughter and husband can manage financially. And I feel honored to watch them grow up and have a lot of influence on them, so they turn out as beautiful human beings. To me, it is irreplaceable and priceless.

But oh! They do wear me out to the point of exhaustion! We are in lock down, and need to maintain some type of routine for the kids. Lupus doesn’t have a routine though as we know.

I am lucky enough now that I can explain about “Nanny’s naughty lupus that makes her sick and sore”. They understand that we only know a bit about lupus but nice doctors are trying to find out more about it so us Lupus fighters can be well all the time.

I don’t care about mess unless it is potentially germ causing (kitchen/bathroom) if I am unwell and the kids have learned to help more when my “face is red” from my butterfly mask.

Something to give you hope for the future in a really special role. ♥️

Good morning Colonial girl! You expressedMy sentiments so clearly😍 Helping to launch our grandchildren into the future is

An honor. A Blessing. I love how you have explained “Grandma’s red face.” Teaching

Them to be Lupus warriors and looking out for you. What an uplifting post for all of us that just want to love on our grandchildren

And have them love on us. Blessings to

You and your family♥️

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