November 9, 2014 at 6:15 pm #75426Am I the worst mother?
I don’t know if this is the correct place to say it, please don’t all shoot me down but I feel totally worn down and surely I cannot be the only one?! I have 3 wonderful children the youngest (6) with a rare type of CMD, my youngest uses a power chair, is tube fed and has very little upper body strength. I’m continually trying to balance the needs of all my children combined with the extra needs of my youngest which includes tube feeding, toileting, continual repositioning, trying to come up with activities so he is not bored, trying to help him cope emotionally, dealing with professionals, continual broken nights sleep – we were in hospital one day last week, we are back in hospital all day tomorrow, school is going pear shaped and requiring loads of extra meetings, my son is now losing his ability to write and is having to start using a voice recognition programme. My husband is working long and hard hours, I’m trying to hold down a part time job during school hours for a bit of extra money and now I have a prolapsed disc in my back. I probably sound like a nasty ungrateful mother but if I don’t tell someone I feel like I will explode! I love my husband and my children more than anything in the world but right now I am exhausted and feel like I’m drowning, there must be someone else out there who feels like me and came out the other side??!woodstockParticipantPosts: 10Joined: 05/05/2011November 10, 2014 at 2:18 pm #95013Re: Am I the worst mother?
You DON’T sound like a nasty ungrateful mother to me – you sound like a loving, hard-working mother who is frazzled and in need of help.
I don’t have children so I can’t offer any advice regarding how to juggle all your many priorities, but I really hope you have some replies from other members of the forum.
Have you searched around the MD website for help? Have you seen your GP [regarding the prolapsed disc and your exhaustion]?
One thing that has crossed my mind is this: have you applied for disability living allowance and attendance allowance for your son? I just wondered if you had these benefits they might help you fund a carer to help for a short while one or two days a week.
Sorry I can’t be more useful but I hope others can.
SybyllasybyllascarlettParticipantPosts: 383Joined: 07/02/2012November 11, 2014 at 11:19 am #95014Re: Am I the worst mother?
You sound like many other parents, trying to do the nest with the least. You have so many demands upon you, it is like plate spinning while walking a high wire blindfolded. Dom’t be so hard on yourself.
MD has an Advocacy Service which can help with applying for benefits, and the Citizen’s Advice Bureau are awesome with helping in a myriad of ways.
Are you in contact with the MD Regional Care Advisor or the new Ambassadors?
I can post links if you are interested [didn’t want to overload you]. Sounds very much like you need some help and a break.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015November 16, 2014 at 2:59 pm #95015Re: Am I the worst mother?
Hi Woodstock, my mother had 3 children with DMD, 2 boys 1 girl. I am the only survivor and am in my 50s now. My parents struggled too in the days, pre carers and very little financial help. You will get through but take/seek out any help you need and try to live as “normal” a life as you can.
DavidDiggers14ParticipantPosts: 2Joined: 16/11/2014January 26, 2015 at 12:13 pm #95016Re: Am I the worst mother?
Hi, first of all you definitely don’t sound like the worst mother. You sound like you have loads on your plate and dealing with a very hard situation. I can certainly empathise for I too have a young child with CMD. We’ve only recently received the diagnosis but the pressure of dealing with the present demands and worrying about the future push me to my limits too. I can’t offer advice or light at the end of the tunnel but would be happy to discuss stuff with you. Id be interested to hear what type of CMD your son has. You describe symptoms that my daughter currently has on is forecast to experience down the road. Hers is also very rare. You posted this a few months back and I have only just joined the forum so i hope things are iimproving for you. Best wishes.LMBA76ParticipantPosts: 2Joined: 21/01/2015
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