Today I came to the heartbreaking realisation that I would not be capable of taking care of my 1 year old Grandson for 2 1/2 days (while Mummy and Daddy went to Dublin) as I agreed to do, 6 months ago.
It was one of the most devastating, admissions I've ever made.
I can barley get to Waitrose and carry back, two small bags of groceries! If I change the sheets I have to sit and rest for at least an hour. Forget cleaning the bathroom! If I do that, I'm done for the day.
How in the hell am I going to carry around, dress, feed, entertain, play with, pick up, take out, calm down, and ensure the absolute safety of a non-walking, one year old for 10-12 hours a day?
My daughter was absolutely in agreement with the decision and has a back-up, so the plans are not ruined; but that didn't stop me from crying most of the morning.
To have to admit to yourself (and your youngest child) that you, "SUPERMOM" believe yourself incapable of this small (what should be most pleasurable) task was depressing at best.
PMR & GCA have changed my life... and not in a good way.
I keep looking for the "silver lining" (as I'm sure there is one) and I occasionally catch glimpses of that lining, in the lessons I'm learning and positive lifestyle changes I've been forced to make, but bloody hell, if you cant take care of your grandchild.... what's the point?
maybe boring afternoon TV but i don't need to concentrate
Disney Paris totality agree doesn't appeal to me but sort of promised i would go .Boots ,base layers hat, scarf sounds like I'm having a winter sports holiday
I was once told that the area where Eurodisney is located is one of the wettest places in France! My daughter wanted to go for a long weekend - until she got the quote...
Quit being so hard on yourself! You are fortunate to have such an empathetic and intelligent daughter who is fully aware of your condition and your limitations in this chapter of your life. Your grandson will never know and besides, you can make it up when your feeling energized! I'm optimistic...the next chapter will be worth the wait and in the meantime, perhaps you can spend shorter periods of time with him? I understand...living with this condition is like walking on a "tightrope." You wake up in the morning hoping and praying that there is little wind. Some days there is a very slight breeze and other days it's like fighting hurricane force winds. We somehow manage to weed our way through all of our setbacks, in part, due to this forum...that my friend, is a silver lining.
Thanks micheleinnaples, I love the tightrope/wind analogy!
I remember that feeling with my niecesabout 15years ago I have started having them for a week or two in the summer hols. I have used to take them swimming, to the park, the movies in one day. Then 5 years in I was dx with fibromyalgia. I have still had them but imposed one big thing...movies swim or visit magna or museum or whatever. I have was so exhausted even with those limitations. I have was sitting in the bath crying...the youngest was about 11 by then. She came in and asked if they had upset me and I have said no I have an crying because I have an not sure I have can do this again. I have had them the following year but then had to just do 2 days. I hadn't expected them to come in teenage years anyway. Who want to spend time with old auntie!
You will feel up to it again. And as they get older at that young age they get easier. It's sad but this condition will be controlled, you will feel better and get back up to a level you are happy with. You can see them for shorter periods and have cuddles. As someone else said you are lucky that your daughter understands. Take some virtual hugs for the moment. 💪🎢
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Poopadoop, You speak the truth. I am open an accepting virtual hugs... Thank you.
I can empathise with your pain about this. I took care of Theo when his mum went back to work a couple of days a week, I loved it and I love him, now aged 3 and living in Australia. Thanks to the crash course in child care that I gave to uncle and Grandad ( who has the flexibility to work from home) and uncle who was hmmm between jobs, we muddled through. The upshot was an unusually close and intimate relationship between the 4 of us. A lot of the heavy lifting and playing was done by them. I still collapsed when Theo went home. The hardest part was his parents hanging around for an extra hour de- stressing and off loading at home time. It was the happiest time I’ve had in years - we all got loads from it. I would really rest to save up the energy for this and many’s the time I thought the night before “ I just can’t do this” and wondered whether to ring my daughter. I didn’t.
I had him while his brother was brought by C section 6 weeks early and all the times his parents were at the hospital with a fragile prem baby full of tubes. I don’t know why I’m telling you all this except it nearly killed me, and all because I couldn’t say no. A. because I was so in love with him and B. because of all the reasons you are in pain now.
We have a disease that is finite thank God and we will get better. Sometimes we can get creative so that we can do the joyous things.
Looking after a one year old baby boy who’s missing his mum for 2 and a half days is not small. It’s massive and you took the mature, self caring decision, to say no, at the moment I don’t have the strength.
Sheffieldjane, Thank you... I know in my heart of hearts you are right (that I was right) but... (and here it is again) my EGO and fragile sense of self worth, is bruised and battered.
You'll feel better if you plan a visit to see him at his house where you can sit and watch him play or join in as you feel up to it. One fun thing you can do now at your leisure - record yourself reading a book and send it to him along with the book.
I did an audio book for my first grandson when he was about 15 months old. I sent the book as well. I filled the tape with children's songs that I'd copied from another CD. He loved it. He really thought Grandma was on the radio, and when he heard the songs, he was convinced Grandma was singing!
If we learn to care for ourselves at least a fraction as well as we have cared for others.
If we learn to let others give us what we need, and learn to accept gracefully and gratefully what others have been wanting and needing to give us.
If we have the courage to be vulnerable, and see that as the part of the great beauty of being human instead of superhuman.
If we learn to appreciate the quiet and the stillness to nuture our resources and "polish our spoons".
If we learn to gentle, rather than wrestle, "The Gorilla".
We get better.
And we get better faster with the love and help and support of others.
And having learned all this, we'll be able to teach it - to our family and to our friends - and hopefully they can learn it without enduring the chysalis of what ails us.
Totally agree with Mamici ! That was profound! I think I’m going to make a copy of this and stick it on my refrigerator or bathroom mirror so that I can be reminded often. I thank you, too.
Oh poor you. Be grateful that your daughter understands. Be kind to yourself and that includes not overdoing things. I only have PMR and now thanks to the wonder of Pred that is mostly controlled. Other aches I blame on my age.i look after my 3 year old grand daughter half the week and she is now at nursery in the afternoons. That's my nap/recovery time 😊 Lucky that my husband is around but he "doesn't play the games properly granny"but he does help a bit.
The time will come when you will feel more able to cope with the demands of a little being but for now you must be your main priority. I gave myself the nickname 'Granny canni' when I was at my worst, I still remember the pain of lifting a wee teeny onto the toilet, she's light as a feather but felt like a concrete block pre Pred.
Don't beat yourself up about this. One day it will be a distant memory. Big hugs
Mamici, I know you have to be terribly disappointed in not being able to help your daughter and spend time with your grandson. Another blow PMRGCA delivered. But know that it’s just one blow. You will win this fight. It may take many rounds, but you will win. You will help your children with their children; just not this time.
Lately, I’ve been reflective of my journey through Clinical Depression in the 1990s. I couldn’t work for a year, my marriage was falling apart because of it and I was in a tarpit of despair. I told my psychiatrist that he couldn’t fix me as I was the sickest patient he would ever have. It was terribly challenging and yet I came through to the other side. Oddly enough, I’m thankful for that experience. I became a much better person because of it. And it appears that, if I’m lucky, I’ll learn to be an even better person by going through this. Heaven knows, I’m in wonderful company during the journey.
And so are you. Listen and really take heart to their advice and welcome their comfort. For the above responses held a lot of wisdom and caring for you.
And now I’m going to go see if I can dig out my copy of The Tibetan Book of Living and Dying. It helped me through those dark days of depression and I’m curious to see what ‘that Joy’ thought was important to highlight. Laughing.. I hope I didn’t highlight just the words ‘and’ and ‘the’. I might have to get a different color highlighter for this journey.
Thank you Insight329, I absolutely treasure your (and EVERYONE on this site's) response(s) to my "rants" and "wonderings." I have found immense comfort and wisdom in the words that you all so freely share... I cant imagine how dark and scary the past two months would have been, for me, without all of YOU!
How I will ever repay you al is the question?
Hmmmm? I may be feeling the stirrings of a "rant," about the love, kindness, compassion and empathy we receive from total, STRANGERS, when we least expect it!
I know it's a huge disappointment, but you made the right call and your daughter understands. SO much better to look at what you can and can't do than to try something and find you can't but have to keep going. You should feel good that you could see looking after a little 'un is a step to far for you.
On the plus side, you can look forward to time with your daughter and grandson, you can have all the play time you want and she can have all the tidying up
I like it!
The time when I get ALL the playtime, hugs, cuddles, and love... and she gets ALL the tidying up! : )
You are still her supermum and always will be. The tables may have turned for a while, but as my lovely mum used to say, This too will pass. Be kind to yourself and remember that the sun always rises again. Bless you.
Morning mamici1,. Reading all the lovely posts you have received to help you through this difficult time is helping me to not feel too bad at having to accept my children's help while John is in hospital. Take care as this can be a rocky road at times. x
Yes, people are amazing, wonderful and most enlightening aren't they? Sounds like you have a lot on your plate! I hope, John is out of hospital soon and your lives get back to "normal." Hahahaha, whatever that is!
Lots of love and understanding here and it’s so true that it will pass . My first thought on reading this last night was ,I’ll go help out but in the morning light , I would be a frightening stranger to your grandson . Please keep ranting. Carol
The age of your grandson is the most physically challenging stage..he'll grow and you'll be able to cope just fine.
I admire your ability to say "no".. I would have said "yes" and then suffered the consequences. Good thing 7 of my 9 grandchildren live abroad or I'd be dead.
I'm actually quite surprised at my ability to come to this realisation and to actually say, "No." That's not like me at all!!!
I must attribute my decision to all of the genuine, heartfelt, experienced wisdom bestowed on me here, on this site!
People have been so forthcoming, honest and generous with their own experiences, that I had to face the facts and realise that I was just kidding myself if I thought I could do it!
People have said far more eloquently than I can, that you've made the right decision - selfless - not selfish.
Just put groceries to the weight of your little one into the 2 carrier bags and pick them up many times over the next 2 or 3 days - then you'll realise you were right.
Hope you get to see him soon for those cuddles, rather than the 'stress' of caring for him.
I know right!!!! He must weight like 18-20 pounds... I cant imagine carrying him around all day, on my hip, all crunched over! And lifting him, up and down and up and down. Who was I kidding?
I looked after my grandson at that age so mummy could do something - doubt it was work - and after an hour and a half I was on my knees. His mother said the same - she struggled at the age of 22!
That was long before I got PMR, he's 16 now. You have to remember that even without being ill we are a LOT older than we were when our children were small and their mothers are now. And it DOES make a difference.
I went through smtg similar, having to tell a niece that I didn’t have the stamina to host her and her two daughters for a visit recently. And am worried about traveling to see my grandson play baseball this summer. I cried at these losses as well.
These are things that life is about for me. I hope that there will still be time and energy after PMR for me, 76 years old, to look forward to these things again.
Ohhhhh, Hindags, I'm so sorry. Yes, these are the things that make my life richer and fuller, now! ...and the thought of not being able to experience them, makes me very sad.
However perhaps, we, BOTH need to pull ourselves up by the bootstraps and learn to appreciate all of little pleasure that life does offer to us. I find myself being grateful for things now (AGCA = After Giant Cell Arteritis) that I NEVER even noticed before!
There is still time... there is always more time. Right up until that last moment.
You have to do that now because if they came and you felt very ill during and after their visit you would definitely not want them to visit again. This way there is 100% chance that when you feel a bit better they can visit and remember they can help you. My younger niece in that branch of the family basically ran around for me on her 21year old legs at Xmas. Usually I get a playful mouthful of banter lol.
It will get better, by the time he is running around you will be feeling much stronger, keep telling yourself that and it WILL happen.
I have no grandchildren, my married daughter is 46 and has no wish to be a Mum, the single daughter is 48 this year and would love to be a Mum (works in Childcare), but never met THE MAN. She used to be a Nanny, I told her to get a T-Shirt made with "I'm just the Nanny" on it.
I am 2 and a half yrs into PMR, down to 8mg Pred and feel it is getting easier. It has turned into Piriformis Syndrome so got to work on getting rid of that now. Never a dull moment is there?
Thank you, MarciMay, I am at the beginning of this journey (diagnosed 11/17) and now on 70 mg of Pred! It will get better, I know it will... but I still vacillate between acceptance and denial. : {
I understand completely. I’m right with you. I think knowing you can’t do things you want to do is about the hardest part. Not feeling well is bad but the way this effects our lives is worse. I don’t plan anything too far ahead these days because I never know how I’m going to feel. I have some good days and for those I am grateful but then there are some really bad days too. I don’t know if it’s the PMR or the prednisone.
Yup... I make my decisions on a daily basis, as I usually have good mornings, but then feel crap in the afternoon. At least I have sussed this out!
The Prednisolone (70mg) side effects are slowly killing me... down to 65 mg tomorrow! : )
Well everyone has said it all. First of all I'm amazed at what sense you write. I'm sure if I was on 60/70 mg of pred I wouldn't be expressing myself half as well as you do! I've had PMR then morphing into GCA for 3 years now. I've had to relinquish looking after one of my grandchildren and now we all just meet up for one morning and go and have a treat for an hour. I can't rush around with my other daughter's 4 boys who are older, so we meet up once a week, my daughter cooks dinner and we watch a film with the boys that they think I'd like! All of these things are not what I would have normally planned. My youngest daughter who has a 10 month old is now 6 months pregnant with twins and I would dearly love to help her ( she lives in central London and I'm in the Midlands) but again I know I've got limitations on what I can do, when and how. It's so hard to accept sometimes,I think, that we can't do what we want/ would normally have done so I think it's being creative about what we can do without losing the contact. I think one of the positive things here is that your daughter totally understands and has a plan B and that secondly that you have had the courage to say you can't do it. I think at first this is very hard but is a humbling experience and helps us also be more understanding of others. I'm sure too that we can be a role model in our weakness: it's teaching our daughters/ sons too not to attempt to be superman/woman (which we're all encouraged to be) but again for them to know their limitations and to be good to themselves so that their health doesn't suffer hopefully in later years.
Thank you.. thank you ever so much. It's a valid question... I find it hard to string a sentence together when I'm speaking, but when I write I get "possessed."
I am sad you've had to relinquish looking after one of your grandchildren, that must have been hard. However happy to hear you have built a different type of relationship with them that works for YOU!
I love the idea of being a role model even my weakness; it's important for my girls to see I am not "invincible." I am but only mortal and have boundaries and limitations like everyone else.
Ah but the point is that you will learn to take of yourself....and after that the grandkids. I have been in the same boat but we can't do what we can't do. (for now)
I was fortunate ,pre PMR,that l was able to look after my baby grandsons when their mummies worked part time. They are older now but still come round during the school holidays . I am so sorry that you are not able to look after your little grandson at the moment,but hopefully you will eventually feel a lot better and would be able to look after him when he is older and will not need lifting about. I have a great grandson now and sadly would not be able to manage him ,he is just beginning to crawl and climb around , like you l find it hard to do much around the house,l have to pace myself,one of the hardest things is changing the duvet cover. I wish you lots of happy times with the little boy when they bring him to visit you xx
I have been following your post since struggling out of bed this morning, and find myself overwhelmed by the wisdom, common sense and compassion expressed by all who have responded.
Youarestill "SUPERMOM", in fact more so. You have faced up to your currentphysical condition and taken a sensible course of action. You have reinforced your open, honest and adult relationship with your daughter, and you must have reassured her that you would never put your little Grandson at risk through unrealistic expectations of your own capabilities.
I'll bet your daughter is relieved, she was probably worrying too. Now could be the time to share more clearly with her the effects on you of GCA / PMR, and even show her this site. Together you may find different ways to support her during your temporary limitations.
The 'point' is that you are still Grandmother and litle one will need you for much more than physical care over many years to come.
Sending you the best wishes and bundles of positive vibes.
Okay... that was lovely and for some silly reason... it made me cry. I think it was the, "...you have reinforced your open, honest and adult relationship with your daughter," but I'm not sure why that made me melancholy?
Stupid Prednisolone!
And you're right, I kept thinking what if I collapsed, fainted or had seizure or something! I'd NEVER had forgiven myself.
Sending best wishes and positive vibes right back at ya!
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