Grandparents Group

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Comment by Anita Tremblay on November 15, 2008 at 3:38pm

Hi Cece.

Sounds like you have alot on your plate!!

From all the professional advice I received for my mother was that she had to keep mobile as much as possible. This is a muscle deteriorating disease and if the muscles arn't used they will deteriorate and loose more of their elasticity and the symptoms will get worse..

You are fortunate that you have a understanding husband, even though you don't always agree.

As far as your daughter is concerned she should be held accountable for all that she is capable of doing, mentally, physically and emotionlly.

Have you considered professional coucilling for your daughter and yourself as well. Even if your daughter does not want to participate getting help and support for yourself would be benefical. They can help you see things in a different light and give good strategies on how to handle your situation.

Have you considered setting up boundaries that have to be met; like a schedule to check off as things are done. Sounds like your daughter has some anger issues. I can understand how difficult it must be trying to deal with everything when your daughter thinks she should be treated like an adult when she is emotially childlike.

There are no easy answers here; but I would be concerned about how long you can keep going at this pace.

Tiredness is a symptom of this disease. Cleaning up for my mother was a real issue. Cleaniness was not in her profile. She knew I would clean up after her even if I got angy but it never bothered her that much. This is how I became a co-dependant person; I have to deal with this issue every day. I am a fixer, a doer and have trouble letting go and let the chips fall where they my with my own children.

I hope some of this helps you; if you have any more questions please feel free to ask.

Take care; you are a special person and you count too.

Bye for now,

Anita

Comment by Cece Stearns on November 15, 2008 at 1:42pm

Sorry about the blank reply I just sent. Still learning how to do this. Anita, I was just reading your comment and like was already mentioned, just when you are feeling low about your situation, you read about someone else with far more problems and it certainly gets you re-thinking things. My role in the twins life seems to be expanding lately. My daughter with MMD (32 years old) is sleeping much more during the day than she used to. The first words out of her mouth in the morning are "I'm so tired". Translation, take care of the boys! She still walks fine so she can be helpful. Do any of you find it difficult to figure out what your children/grandchildren are actually capable of? I know that part of the disease is an apathetic nature, but if left to their own wishes, they would stay in bed and do nothing but watch TV all day and sleep. I try and be fair about it but I want my daughter to have as much "life" as possible while she is still mobile and functional. My husband (step dad/grandfather) and I are at odds sometimes about my daughter's capabilities. He feels she can help out much more than she does and doesn't want me to have to do everything. For example getting her to pick up her or the kids room or get a few dishes done to her is like a big deal .. unless she has a friend coming over to take her out. Then it is done lickity-split. Her emotional and functional age I would say is between around 10 and 12, but her verbal capabilities are like a young adult. It's like she knows what she is supposed to do but doesn't do it (like changing the kids diapers as often as they need), and then will lie about having done things. Some things she can do fine and I think maybe I am letting her be too dependent on me. But then everyday she will ask me what to feed the kids, or whether they should wear shorts or long pants when it seems rather obvious to me. If I didn't cook, she would never eat unless we had frozen dinners. We give her simple chores which she often doesn't do. It is so hard to know how to treat her because she knows she is an adult and wants to be like treated like one yet emotionally and intellectually she is very child like. Even though the twins take more time and care, they are much easier then their mother. Anyone have any suggestions?

Comment by maryjo guy on November 14, 2008 at 1:40pm

hii

















nov 14
glad to hear from both of you about your twins
what a challange and what great spirts both of you seems to have.

Comment by Cece Stearns on November 8, 2008 at 4:33pm

My husband (not the biological dad) and I are guardians of our 8 year old twin grandsons with CMMD. My daughter, the mom, (32) lives with us also. This can be a good thing and at times a not so good thing! Just being honest. The boys are non-verbal and intellectually challenged but are very different from each other behaviorally and personality-wise. Matthew is the "hugger" and very calm while his brother Jon is very autistic-like and has greater needs. These two have opened up a whole new world to us that we would never have seen or been part of. I consider it a blessing, not a hardship, that there are two of them because they have each other to relate to and love. My daughter's physical impairments are minimal at this time. Her muscles are weak (mainly her hands) but she manages a daily Jazzercise class daily. She has cateracts but they are not a problem. So I guess she is lucky. Her main difficulty, or should I say our main difficulty, has been her lack of judgement and behavior/emotional health. Not so good. What a coincidence that I would find another set of grandparents with twins. I'm sure we have a lot in common. I look forward to the group. Cece

Comment by Katie Walter on November 5, 2008 at 11:47am

We have twin granddaughters with congenital MMD. They are almost 24 and quite severely affected. But they are love bugs! Their mother, my step-daughter, now has a pacemaker and much difficulty walking and gripping. I look forward to having others to "talk" to. Thank you for the site and the group.
Katie