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mrsjoanie
@mrsjoanie

Posts: 7
Joined: Jan 12, 2017

Mother of special need children losing her mind

Posted by @mrsjoanie, Jan 11, 2017

I am a 50 year old mother/step-mother and have 7) children of which 3 (ages 14-30) were born with microcephaly. It is a constant thing and I’m trying my 2nd anti-depressant/anxiety med and am going crazy and long for the “train to stop” so I can get off. Are there other mothers out there with special need children that have found answers to surviving and living happily from day to day or rather night to night and being the support to their children that I should be? Thank you, Mrs. Joanie

REPLY

Welcome to Connect, @mrsjoanie. Thank you for starting this conversation, and reaching out. I’m tagging @ihatediabetes @fernandavidigal @jennsprung and @brentb, all of whom have children with special needs. I’m confident they’ll have some experiences and tips to share.

Mrs. Joanie, I hear you about caring being a constant thing. It’s tough. What medication are you trying?

@colleenyoung

Welcome to Connect, @mrsjoanie. Thank you for starting this conversation, and reaching out. I’m tagging @ihatediabetes @fernandavidigal @jennsprung and @brentb, all of whom have children with special needs. I’m confident they’ll have some experiences and tips to share.

Mrs. Joanie, I hear you about caring being a constant thing. It’s tough. What medication are you trying?

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Hello!  I feel a connection already.  I took 140 mg of Teva-Venlafaxine XR for a few years and now at 53…I can’t cope, go to pieces, cry over anything and everything and just collapse in bed for a day or two with no relief in sight.  I am now taking 15 mg of Escitalopram and feel more calm after a month on it.  I have other things on board as well that I’m trying to accept and get through….2nd darling little grandbaby now, still grieving the 1st one still-born at 32 weeks, my dear 85 year old mother w/severe dementia that I’m trying to get medical coverage in Canada for and have her in a care home, so feel guilty about that and my 3 special step-children…..but I do have a very dear loving husband. 

@colleenyoung

Welcome to Connect, @mrsjoanie. Thank you for starting this conversation, and reaching out. I’m tagging @ihatediabetes @fernandavidigal @jennsprung and @brentb, all of whom have children with special needs. I’m confident they’ll have some experiences and tips to share.

Mrs. Joanie, I hear you about caring being a constant thing. It’s tough. What medication are you trying?

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You do have a lot going on! But frankly guilt is a feeling I wish I could delete. It is such a waste of energy. We do the best we can do given the circumstances of the moment we are in. We can’t always be at the top of our game. And we’re certainly not angels or saints. Caregiving is not for the faint of heart.

If you want to talk to others about caring for a parent with dementia, please visit the Caregivers group https://connect.mayoclinic.org/group/caregivers/ I suggest starting here: “Caring for someone with dementia / Alzheimer’s” http://mayocl.in/2ccA0jO

Thank goodness for your dear loving husband! Do you also live in Canada?

@colleenyoung

Welcome to Connect, @mrsjoanie. Thank you for starting this conversation, and reaching out. I’m tagging @ihatediabetes @fernandavidigal @jennsprung and @brentb, all of whom have children with special needs. I’m confident they’ll have some experiences and tips to share.

Mrs. Joanie, I hear you about caring being a constant thing. It’s tough. What medication are you trying?

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Yes, I married and moved to Canada 8 whole years ago from the States!!  Your reply and first paragraph says tons!  I must memorize it by heart!!  Thank you!  I’m home by myself delighting in quiet time….but it’s gone the second the door opens and the others come home. 

Dear Joanie,

I also take anti-depressant/anxiety meds. I have one kid with a very rare disease and there isn´t treatment for her. I am aware it is a degernerative disease and I am constantly talking to scientists and researching for some solution. I adittion she goes to a crazy amount of therapy and so on. I have only 2 kids and am going crazy… can´t imagine how hard it must be with 7 kids and 3 special kids.

What I can tell you is that all peolple that take care of a special need loved one should take antidepressive to cope with the stress, constant guilt and anxiety – this is what a friend (MD) told me. It is not a situation that therapy can solve because it is problem that won´t go away and (in my case) will probably get worst ….

I suffer with the probability of my child getting worst and that I don´t have the time or energy to research moreto focus on her cure because I need to work, I need to help her trive with her cognitive issues, I need to be a mother and I need to take care of my house.

I know I do the best I can to support her. What I do to remain sane is to enjoy every small oportunity of fun I have during the day. In order to do that, I don´t care about organizing and cleaning up the mess of the house while I am playing with them. After each game I ask them to help me out (we sing a song toguether) and we do toguether what they can and are up to. I finish cleaning up after they go to sleep.

I really didn´t have much time to myself and I beliave that is the main problem.

So, in 2016 I changed that. I took part in a support group for mothers that have children in need (just 6 of us) and 1 psychologist and 1 other professional that is in charge of school inclusion. It is great to share and learn with each other. and the professionals help us with information and facilitating the discussion. It is once a week at lunch time. My husband has to stay with them for one hour per week so I can do it. I also downloaded an app called headspace and I have 10 minutes before I go to sllep tio use it and meditate. It helped me bunches. Finally, I stopped watching TV (I almost never had time to watch anything anyways) and gave myself half an hour before I go to sleep to read a book. When I don´t drop dead after putting kids to sleep and cleaning up the house I force myself to read and relax. It is good because for those 30 minutes my mind can wonder off. I have also bought a bike. I didn´t find time to use it yet, but want to try using it to get to work at least twice a day. I do beliave finding time for our selves if the key….

Love Fernanda (Brazil)

Dear Fernanda……I’d like to encourage you with a “you do sooo well”….but sometimes that is not what we want to hear, is it? Because sometimes we don’t do well. I really need to hear these little successes other mothers have managed to find in their daily lives with all the cares and needs required. We don’t need sympathy….just another one who understands.

I want to be a happy and loving contributor to my children’s lives and to know I can help, comfort and nuture them and know that they are coping with their difficulties and are doing the best they can do. I want to be able to see their little accomplishments and make these mean more to me instead of always wishing they could do better.

I was included at a large (200+ people) special education conference 6-7 years ago and came away feeling really uplifted because I could see there are so many special need children out there and there are so many that spend their life helping fulfil these children. I want to be able to do this too. So I struggle on, day after day….forward 1/2 step, back 2….forward another 1/2 step, back 2…..not able to see that maybe there is more progress being accomplished than I realize because I am so caught up with all the details.

I can see the little things for you include 1 hour a week w/others in similar situations, a bicycle, enjoying your play time with your children and giving it your full attention, 10 minutes of meditation and time to read before bed. These little times turn into very big moments of “recharging” yourself and do add up. Yes….this is needed. I’d like to think I was organized enough to do this, but tend to just “shut down” and plod along trying to “tune out” things until the next crises hits. There doesn’t seem to be any time I can schedule to rely on others to “take over” so I can get this total relief. I’ve always something on my mind or a need somewhere.

So I will think on what you’ve said and make another attempt at this. I’m trying to make it an issue to walk 1 mile a day – takes about 20 minutes and this MUST happen and my family must come to see how important this is to me. But I need to see the necessity of it before I can show them, don’t I? I think this little goal will help me in quite a few areas.

I go back to the doctor today after a month now on my latest anxiety meds. I do feel calmer…but wonder if it’s not the best for my tummy. Thank you for your time and take care, Joanie

@mrsjoanie

Dear Fernanda……I’d like to encourage you with a “you do sooo well”….but sometimes that is not what we want to hear, is it? Because sometimes we don’t do well. I really need to hear these little successes other mothers have managed to find in their daily lives with all the cares and needs required. We don’t need sympathy….just another one who understands.

I want to be a happy and loving contributor to my children’s lives and to know I can help, comfort and nuture them and know that they are coping with their difficulties and are doing the best they can do. I want to be able to see their little accomplishments and make these mean more to me instead of always wishing they could do better.

I was included at a large (200+ people) special education conference 6-7 years ago and came away feeling really uplifted because I could see there are so many special need children out there and there are so many that spend their life helping fulfil these children. I want to be able to do this too. So I struggle on, day after day….forward 1/2 step, back 2….forward another 1/2 step, back 2…..not able to see that maybe there is more progress being accomplished than I realize because I am so caught up with all the details.

I can see the little things for you include 1 hour a week w/others in similar situations, a bicycle, enjoying your play time with your children and giving it your full attention, 10 minutes of meditation and time to read before bed. These little times turn into very big moments of “recharging” yourself and do add up. Yes….this is needed. I’d like to think I was organized enough to do this, but tend to just “shut down” and plod along trying to “tune out” things until the next crises hits. There doesn’t seem to be any time I can schedule to rely on others to “take over” so I can get this total relief. I’ve always something on my mind or a need somewhere.

So I will think on what you’ve said and make another attempt at this. I’m trying to make it an issue to walk 1 mile a day – takes about 20 minutes and this MUST happen and my family must come to see how important this is to me. But I need to see the necessity of it before I can show them, don’t I? I think this little goal will help me in quite a few areas.

I go back to the doctor today after a month now on my latest anxiety meds. I do feel calmer…but wonder if it’s not the best for my tummy. Thank you for your time and take care, Joanie

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Care giving is difficult. You need to think of yourself as a well- you cannot give water freely from a well that isn’t full. Something MUST feed the well.
As a caregiver sandwiched between generations I completely understand where you are coming from! I have a blended family too- a stepson, and two children of my own (my son has special needs) , a husband, my mother (recently diagnosed with Latent Onset Diabetes Type 1 at 60) in law’s that are just now touching 70 an in need of more help and a 93 year old grandfather as well. If I am being totally honest I am exhausted. It is hard to find time in the day to even finish the laundry let alone find “me” time!
BUT- I have flirted with burn out a few times too many. I KNOW that in order to give care, I must receive care. So this is my new mantra.
I will find time in the day where I take care of myself. This may be a walk (fabulous for depression). Or 20 minutes to read something that I enjoy. A 1/2 hour in a super hot bath. 30 minutes of my favourite music blaring in my headphones. Ice cream for breakfast. A trip to the salon to get prettied up. It’s hard at first because I feel “Mama guilt” but I push through.
I see you are in Canada- me too! I’m not sure exactly where you are but there are often respite services available, and again depending on your location there may be other services you could take advantage of. Also connecting in real life with other caregivers may help you. just knowing someone else gets it was HUGE for me.

Welcome!

@mrsjoanie

Dear Fernanda……I’d like to encourage you with a “you do sooo well”….but sometimes that is not what we want to hear, is it? Because sometimes we don’t do well. I really need to hear these little successes other mothers have managed to find in their daily lives with all the cares and needs required. We don’t need sympathy….just another one who understands.

I want to be a happy and loving contributor to my children’s lives and to know I can help, comfort and nuture them and know that they are coping with their difficulties and are doing the best they can do. I want to be able to see their little accomplishments and make these mean more to me instead of always wishing they could do better.

I was included at a large (200+ people) special education conference 6-7 years ago and came away feeling really uplifted because I could see there are so many special need children out there and there are so many that spend their life helping fulfil these children. I want to be able to do this too. So I struggle on, day after day….forward 1/2 step, back 2….forward another 1/2 step, back 2…..not able to see that maybe there is more progress being accomplished than I realize because I am so caught up with all the details.

I can see the little things for you include 1 hour a week w/others in similar situations, a bicycle, enjoying your play time with your children and giving it your full attention, 10 minutes of meditation and time to read before bed. These little times turn into very big moments of “recharging” yourself and do add up. Yes….this is needed. I’d like to think I was organized enough to do this, but tend to just “shut down” and plod along trying to “tune out” things until the next crises hits. There doesn’t seem to be any time I can schedule to rely on others to “take over” so I can get this total relief. I’ve always something on my mind or a need somewhere.

So I will think on what you’ve said and make another attempt at this. I’m trying to make it an issue to walk 1 mile a day – takes about 20 minutes and this MUST happen and my family must come to see how important this is to me. But I need to see the necessity of it before I can show them, don’t I? I think this little goal will help me in quite a few areas.

I go back to the doctor today after a month now on my latest anxiety meds. I do feel calmer…but wonder if it’s not the best for my tummy. Thank you for your time and take care, Joanie

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You are a fabulously kind and strong person. I am amazed at your physical/emotional strength. You are the caretaker for a variety of age groups. My mother did the same thing, God bless her soul. My grandparents lived in a mobile home on our property. My dad built a small house on our property for his mother and niece. It could get pretty crazy at times but my parents found a way to be able to watch over them, provide transportation, provide the food and love them. At times the love part was not easy. Back in the day, we were very respectful to our elders and we protected them. We never sent them to a nursing home, thank God.

@mrsjoanie

Dear Fernanda……I’d like to encourage you with a “you do sooo well”….but sometimes that is not what we want to hear, is it? Because sometimes we don’t do well. I really need to hear these little successes other mothers have managed to find in their daily lives with all the cares and needs required. We don’t need sympathy….just another one who understands.

I want to be a happy and loving contributor to my children’s lives and to know I can help, comfort and nuture them and know that they are coping with their difficulties and are doing the best they can do. I want to be able to see their little accomplishments and make these mean more to me instead of always wishing they could do better.

I was included at a large (200+ people) special education conference 6-7 years ago and came away feeling really uplifted because I could see there are so many special need children out there and there are so many that spend their life helping fulfil these children. I want to be able to do this too. So I struggle on, day after day….forward 1/2 step, back 2….forward another 1/2 step, back 2…..not able to see that maybe there is more progress being accomplished than I realize because I am so caught up with all the details.

I can see the little things for you include 1 hour a week w/others in similar situations, a bicycle, enjoying your play time with your children and giving it your full attention, 10 minutes of meditation and time to read before bed. These little times turn into very big moments of “recharging” yourself and do add up. Yes….this is needed. I’d like to think I was organized enough to do this, but tend to just “shut down” and plod along trying to “tune out” things until the next crises hits. There doesn’t seem to be any time I can schedule to rely on others to “take over” so I can get this total relief. I’ve always something on my mind or a need somewhere.

So I will think on what you’ve said and make another attempt at this. I’m trying to make it an issue to walk 1 mile a day – takes about 20 minutes and this MUST happen and my family must come to see how important this is to me. But I need to see the necessity of it before I can show them, don’t I? I think this little goal will help me in quite a few areas.

I go back to the doctor today after a month now on my latest anxiety meds. I do feel calmer…but wonder if it’s not the best for my tummy. Thank you for your time and take care, Joanie

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I appreciate your praise, but I really don’t deserve it. I do keep reading it though! I have so very much to learn. I had to put my dear mother in a care home 7 months ago. I was getting sooo close to “going sideways” and definitely feel mentally weaker in the last year. But I feel that these care homes are provided for us if need be and Lord knows I needed help. Mom did tell me years ago that if she ever got to the point where she didn’t know what she was doing, to put her in a care home. I felt that she wouldn’t want to be a burden to me, so I try to keep that before me. Now of course, she wants me by her side 24-7. She used to ask me here next door in her suite we built for her, when I tucked her in each night….if I was sleeping in her bed with her! Tee hee…what would my husband say? I do have others too that need me and with special needs children, my husband says that even though I don’t feel I do enough for them, just being here means everything to them. I am grateful for all who are able to look after their aged parents at home. It is a service like no other! Thank you for writing.

@mrsjoanie, How are you doing today? Just wanted to let you know I was thinking about you.

That is very kind of you. I should more thankful for my children and how well they do do, when there are so many others with suffering and extreme discipline. The 30 year old is dusting and vacuuming for me today! I have felt “lifted up” more this week. Just started taking more iron yesterday, as I know the doctor was concerned with my levels a couple years ago and I was very diligent about it back then. Going out now to do some of my 14 year old daughter’s paper route and get some exercise. It’s been a good lesson for her and gives her a sense of responsibility and also “hands on” with money/bank account, etc. (She is just learning the difference between a 1$ and 2$ coin and that one coin is twice as much as the other. She loves to spend it….but…..not able to comprehend saving. Also looking into shower timers, because her and our 30 year old have no concept of time. I always have to turn the hot water off on our daughter after 15 minutes. These things do seem petty, I know. But it is always something and it’s constant – from one child to the next and the next……3 special needs here. Thanks for now.

@mrsjoanie

Dear Fernanda……I’d like to encourage you with a “you do sooo well”….but sometimes that is not what we want to hear, is it? Because sometimes we don’t do well. I really need to hear these little successes other mothers have managed to find in their daily lives with all the cares and needs required. We don’t need sympathy….just another one who understands.

I want to be a happy and loving contributor to my children’s lives and to know I can help, comfort and nuture them and know that they are coping with their difficulties and are doing the best they can do. I want to be able to see their little accomplishments and make these mean more to me instead of always wishing they could do better.

I was included at a large (200+ people) special education conference 6-7 years ago and came away feeling really uplifted because I could see there are so many special need children out there and there are so many that spend their life helping fulfil these children. I want to be able to do this too. So I struggle on, day after day….forward 1/2 step, back 2….forward another 1/2 step, back 2…..not able to see that maybe there is more progress being accomplished than I realize because I am so caught up with all the details.

I can see the little things for you include 1 hour a week w/others in similar situations, a bicycle, enjoying your play time with your children and giving it your full attention, 10 minutes of meditation and time to read before bed. These little times turn into very big moments of “recharging” yourself and do add up. Yes….this is needed. I’d like to think I was organized enough to do this, but tend to just “shut down” and plod along trying to “tune out” things until the next crises hits. There doesn’t seem to be any time I can schedule to rely on others to “take over” so I can get this total relief. I’ve always something on my mind or a need somewhere.

So I will think on what you’ve said and make another attempt at this. I’m trying to make it an issue to walk 1 mile a day – takes about 20 minutes and this MUST happen and my family must come to see how important this is to me. But I need to see the necessity of it before I can show them, don’t I? I think this little goal will help me in quite a few areas.

I go back to the doctor today after a month now on my latest anxiety meds. I do feel calmer…but wonder if it’s not the best for my tummy. Thank you for your time and take care, Joanie

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Mrsjoanie, just had to respond to your feelings about having mom in a facility appropriate to her needs. As a second career i worked in all sorts of facilities as either an emotional support person or an activities coordinator. Just a few months ago i worked at a home care agency that sent me to hospice, alzeiheimers and mental health facilities. Also i was sent to someone’s home just to give the family a chance to get out and have their own time. What i learned: after a few days of adjustment, each and every person who now lived there began to come out of themselvesl they enjoyed the company of others their age and of course there are always appropriate activities for one and all. Even those in hospice enjoyed us reading to them or just talking about their life. I have so many wonderful memories of these very special people. Sometimes it was my paid job and sometimes it was my volunteer work. But the big thing is that once their loved ones were able to make the difficult position to move them, the new residents adapted so well that some of them did not want to go home even if they could! To tell the truth, i received way more than i gave. The gift of their big smile when we walked in just to visit, was worth more than they even knew. If your loved one is moving to a facility, do know that it will turn out to be rewarding for all concerned. I promise. Blessings

@mrsjoanie

Dear Fernanda……I’d like to encourage you with a “you do sooo well”….but sometimes that is not what we want to hear, is it? Because sometimes we don’t do well. I really need to hear these little successes other mothers have managed to find in their daily lives with all the cares and needs required. We don’t need sympathy….just another one who understands.

I want to be a happy and loving contributor to my children’s lives and to know I can help, comfort and nuture them and know that they are coping with their difficulties and are doing the best they can do. I want to be able to see their little accomplishments and make these mean more to me instead of always wishing they could do better.

I was included at a large (200+ people) special education conference 6-7 years ago and came away feeling really uplifted because I could see there are so many special need children out there and there are so many that spend their life helping fulfil these children. I want to be able to do this too. So I struggle on, day after day….forward 1/2 step, back 2….forward another 1/2 step, back 2…..not able to see that maybe there is more progress being accomplished than I realize because I am so caught up with all the details.

I can see the little things for you include 1 hour a week w/others in similar situations, a bicycle, enjoying your play time with your children and giving it your full attention, 10 minutes of meditation and time to read before bed. These little times turn into very big moments of “recharging” yourself and do add up. Yes….this is needed. I’d like to think I was organized enough to do this, but tend to just “shut down” and plod along trying to “tune out” things until the next crises hits. There doesn’t seem to be any time I can schedule to rely on others to “take over” so I can get this total relief. I’ve always something on my mind or a need somewhere.

So I will think on what you’ve said and make another attempt at this. I’m trying to make it an issue to walk 1 mile a day – takes about 20 minutes and this MUST happen and my family must come to see how important this is to me. But I need to see the necessity of it before I can show them, don’t I? I think this little goal will help me in quite a few areas.

I go back to the doctor today after a month now on my latest anxiety meds. I do feel calmer…but wonder if it’s not the best for my tummy. Thank you for your time and take care, Joanie

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Dear Georgette….Thank you for writing. There are two sides to every story, aren’t there? It takes very special people to work in these facilities and we are very thankful for you and those like you! You know it is difficult for us children to turn our responsibilities in looking after our dear parents over to someone else. So thank you for sharing. I wish you were in my mother’s home! Take care and keep the love flowing, Mrs. Joanie

Hi my name is Lisa, my son us 5 years old and has been diagnosed with cerebellar atrophy, by an MRI we have been to the Mayo Clinic in the (USA), there we proceeded to geonomics (genetic testing) they did a small panel test and that came back good, so they moved on to a large panel test, got a call last week and we have to go back to the Mayo Clinic for the results in November, they just seems like a long wait for wanting answers for the last 5 1/2 years. This is a very stressful time for my husband and I. I was told before the large panel was done the if the news was good we wouldn’t have to go back to the Mayo Clinic for the results and if they were not good we would have to return for the results, which is giving me this feeling my son’s diagnosis is some sort of genetic disease. I’ll be happy for the answers yet I am also very scared. I suffer from depression and anxiety, I often get overconsumed with my son and trying to research on what types of genetic diseases are curable, again he is only 5 years old and just started kindergarten.

@lisapraska

Hi my name is Lisa, my son us 5 years old and has been diagnosed with cerebellar atrophy, by an MRI we have been to the Mayo Clinic in the (USA), there we proceeded to geonomics (genetic testing) they did a small panel test and that came back good, so they moved on to a large panel test, got a call last week and we have to go back to the Mayo Clinic for the results in November, they just seems like a long wait for wanting answers for the last 5 1/2 years. This is a very stressful time for my husband and I. I was told before the large panel was done the if the news was good we wouldn’t have to go back to the Mayo Clinic for the results and if they were not good we would have to return for the results, which is giving me this feeling my son’s diagnosis is some sort of genetic disease. I’ll be happy for the answers yet I am also very scared. I suffer from depression and anxiety, I often get overconsumed with my son and trying to research on what types of genetic diseases are curable, again he is only 5 years old and just started kindergarten.

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Hi, @lisapraska. I am sorry to hear about the stressful time you and your husband are having waiting for news on your son. Waiting can be really challenging. My own son was born with a sacral dimple, and we had to wait three months to finally get an MRI done, till he was old enough. The waiting time was concerning.

I see that you’ve connected with our Brain and Nervous System Group, which is great. I also wanted to encourage you to take a look at the About Kids and Teens Group, moderated by @kanaazpereira, here: https://connect.mayoclinic.org/group/childrens-and-teens-health/. Also, I thought you might be interested in looking into our Caregivers group, moderated by @IndianaScott, here:https://connect.mayoclinic.org/group/caregivers/.

Lisa, what kind of emotional support system outside your immediate family would you say you have at this time?

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