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Son with disability

Son with disability

Posted by VioletFlower on Feb 14, 2020 3:57 pm

Hello all. 

I am new to this forum and my son with disabilities has just been diagnosed with testicular cancer. He will be having removal of one testicle this coming Tuesday. I’m hoping to meet others who have a loved one taking mood disorder medications and how that works with follow up treatment. I’m hoping for the best but trying to prepare for the worst. He has had this for a long time apparently. Lives on his own with a support team assisting him. 

Valentine hearts to everyone on this journey❤️💕❤️

Re: Son with disability

Posted by ACH2015 on Feb 14, 2020 4:23 pm

Hi VioletFlower‍ 

And a  Happy Valentine's Day to you!

Many of us here as patients or caregivers are dealing with existing or created mental health issues on top of cancer. Speaking for myself, I had clinical depression well prior to my cancer diagnosis. I found the need to redirect and increase my mental therapy, but not my medications. That is always an individual issue and needs to be assessed by both the patient and the mental health professional during the course of everyday living. On another related subject, the medical team will need to know what medication(s) your son is on. Some drugs can interact with treatments (chemo, radiation etc...) if necessary as part of the treatment path.

Have you had an opportunity to discuss these issues with your son or the support team that assists him? Cancer can certainly cause increased stress and require greater levels of therapeutic interventions to get through the treatment and recovery process. One thing that I found that helped me was to participate in 1 on 1 therapy with one of the hospital social workers where I received treatment, and group therapy as a cancer survivor later down the road. These may be of benefit to your son now and in the future.

Coping when you have cancer and Testicular Cancer - Understanding your diagnosis are two resources I'd like to share with you from the Canadian cancer for both you and your son.

Welcome to the site, lots of good information and support for anyone dealing with cancer.

I hope this helps, and I am sure others will reply toward assistance.

Keep well and in touch.

ACH2015.

Re: Son with disability

Posted by VioletFlower on Feb 14, 2020 7:19 pm

ACH2015, thank you so much for your reply! You have no idea the relief it gave me. So our journey has just been 2 wks long so far and the last 2 days has been a whirlwind with pre op bloodwork and him cooperating with having his nurse from the team who helps him, get onboard with communicating with me and the DRs. 

I have moved across country to take an early retirement in my deceased parents home. Luckily I have the time and a car to do whatever is needed for him. I also ended up in a bad depression in the summer and luckily am on an antidepressant the is working well for me. I wonder if I need or can take an anxiolytic with my AD so will go see a GP about this. Just added a little more of my dose the last 2 days and it seems to help my anxiety. I’m also trying to connect with a therapist but have not had much luck finding one so far. Will get this on board ASAP so I can be in the best state to help him and other family members cope.

I had a thought that his meds may make it difficult and he is on many! So he has a psychiatrist as part of his team and hopefully these drs can work in tandem. He has some cognitive difficulties too but I’m sure the team will ensure he gets the support he needs. Poor guy he just turned 41...

I will read the links you supplied. He has not wanted to read anything yet but his sister did read him some things to him the day his GP told him. I’ll give him these links too. Thanks again!

Re: Son with disability

Posted by jorola on Feb 15, 2020 2:23 am

Hi VioletFlower‍ 
I am so glad you found this site! I worked with adults with developmental disabilities for 20 years so I understand where your concerns are. By the sounds of it, your son's doctors will work together to ensure he gets all the support he needs. The question I would have for you is will he get why the doctors are giving him medicine that is making him sicker. That is not what doctors do. They give you medicine to make you better. Maybe this won't be an issue but it was just a thought I had.
I also applaud you for taking care of you. As a caregiver with pre-existing depression I also had to ensure I saw my psychiatrist regularly when my husband was in treatment as it was hard on me. Keep up the good work.
Jodie
Live, Laugh, Love

Re: Son with disability

Posted by ACH2015 on Feb 15, 2020 6:00 am

Hello VioletFlower‍ 

Happy to help, and as jorola‍ said, your son's team will come together to help him get through what he must.  You mention your depression, and that is no easy thing to deal with given your son's situation. If I may say, what helped me was to accept what my situation was, and understand I had to deal with something else in my life - cancer - on top of clinical depression. Don't deny what you have to deal with, and accept you may need to take some time for yourself, and make adjustments here as well. The best thing we can do for ourselves is to understand we can't do this on our own all the time, so good for you in reaching out for support and seeking opinion from others in like situations. Perhaps your GP has some contacts for therapists they could share with you? Also, checking in with the local mental health unit in your area can help with making contacts for therapy.

Cognitive disabilities or not, many of us with cancer find it difficult to accept, investigate or research our situation with cancer. So in that area, your son will find his way with his many supports in how and how much he navigates this. Like everything else, it takes time and moving through what we do as individuals toward acceptance and understanding.

Good to meet you, and please keep in touch with us here. This is a good place to share and be understood as well.

Keep well

ACH2015

Re: Son with disability

Posted by VioletFlower on Feb 15, 2020 4:41 pm

Hello @jorola, so nice to meet you. I have also worked with people with developmental intellectual disabilities for 35 years with a few career changes and breaks thrown in there! My son has a brain disease that causes him to fluctuate with his moods; his ability to read and communicate as well as never been able to work or care for himself very well. His medications do make his level functioning much better than without them so that’s a concern. 

He was very close to his dad who died of brain cancer a few years ago and he also lost his grandparents during that time so he is feeling the weight of this for sure. He is very quiet and preferring to spend time alone. The team are concerned for him and are their for him. He is quite bright and understands very well except when not on medication. So again a concern for me.

Yeah, I was just starting to recover from my depression so am concerned at this point. I still need to find a GP as my current one is retiring and she graciously took me back to get me caught up on physical and vaccines (even measles) etc. I have to travel 2 hrs to Toronto. I think I will make an appointment and see if she can get me into a psychiatrist. Thanks so much for sharing with me. Oh my gosh you have been so helpful! Hugs to you!

 

Re: Son with disability

Posted by VioletFlower on Feb 15, 2020 4:56 pm

ACH2015,  you have made some really good points for me. Today I took an art workshop which was good for me to get out with people in person to forget about my worries. I won’t deny that what I’m dealing with is not easy and that self care is most important. I have taken the Mindfulness Based Stress Reduction course many years ago so will be going back to this as my number one resource. I have journaled for many years and find that helpful although since my depression it has been the first time I have ever gone without doing it and had just started again about 3 wks ago.

I have contacted the mental health community organization here just yesterday and hope to hear back. Also contacted a few psychologists who are not taking patients but one I’m still waiting to here back as I agreed to work with someone in training under a psychologist. The cost is another factor because affording $350 /hr is too steep for me and my insurance only covers a psychologist. So I’m trying and will get there. Maybe I’ll get lucky and find a psychiatrist who does talk therapy. One can always hope. 

So art is my go to life joy and I am telling myself that I have to do these things not only for me but more importantly for my family. Thanks again for your insight and wisdom! Hugs to you too!

Re: Son with disability

Posted by MCoaster on Feb 15, 2020 8:28 pm

VioletFlower‍   The emotional pain of dealing with a child’s illness even when they are adult is so awful.  You have also lost other members of your family and you and your son are now facing this.  

You mention the difficulty of accessing counselling and the expense and mention mindfulness.   I hope that you find the right professional for you soon.   Everyone is unique in what works for them and I can only speak for myself.   As a result of experiencing reactions to antidepressants, particularly withdrawal and not finding the “right for me” professional I have over the years put together what I call my toolkit.   I found mindfulness, Nidra yoga, sitting in nature and some natural remedies help me as I like to be in control.    I made my surgeon laugh when, before my bilateral mastectomy, I turned down Valium as long as I could take my iPad Scrabble all the way into theatre with me.   Last week I took up the offer of Valium for the cataract surgery though!   I also use the iPad during sleepless nights and have nidra yoga and  meditation music bookmarked.   Your art group sounds really good.   Will you share one of your paintings with us?

You will both be in my thoughts on Tuesday.

 Hugs.

Margaret

Re: Son with disability

Posted by VioletFlower on Feb 16, 2020 12:01 pm

MCoaster. Margaret, I’m still trying to get used to the forum and I’m not sure if it matters that your names don’t highlight in my reply?

Thanks so much for your reply! Yes there have been many losses in the last few years which have been difficult for me. I worked a lot of overtime because there was both a need and it has been the thing that has helped me the most to cope with life. I just can’t do the physical work involved in working with people with intellectual and physical disabilities anymore. I still have a good back but developed a rotator cuff injury which has healed since retiring. My planned retirement was to get involved in the art world.

You have given me some great tools to add to my toolbox....listen to music related to yoga and meditation; join a yoga class at the seniors centre close to my home and play games on my iPad. I have wordscape  on my phone which I was introduced to a couple of months ago. I’ll re-read your post to make sure I did not miss anything. Thank you so much for sharing with me!

I will reply with an “art post”.

 

Re: Son with disability

Posted by VioletFlower on Feb 16, 2020 12:32 pm

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I have spent most of my working life taking art classes and doing “art journaling” . As you can imagine this is both art and the written word without rules. I love watercolour but took an oil painting class before moving, from a lifetime master painter and fell in love with oil paint. I don’t have any finished paintings but have video and notes from his 6wk class and will finish them. Landscape is my favourite subject and as Margaret mentioned being in nature is also very healing for me.

I took a block printing course yesterday and want to do more of this but need lots of practice. The teacher said he finds it very therapeutic and I have to agree. I also like craft projects. Started to knit a scarf for my son a couple of months ago.

Above are recent projects or pages from my journal ending with the Lino block and print from yesterday.
 

Re: Son with disability

Posted by VioletFlower on Feb 16, 2020 12:37 pm

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Re: Son with disability

Posted by VioletFlower on Feb 16, 2020 6:15 pm

jorola‍ , ACH2015‍ , MCoaster‍ , I have figured out how to reply to your names. It also seems that there is a time limit to edit posts so I need to edit spelling and grammar before posting.  Hope the posts are not too difficult to read. Thanks for your support.

Re: Son with disability

Posted by jorola on Feb 16, 2020 7:31 pm

You are most welcome VioletFlower‍ 
I am so sorry for all your losses and that it has had a compound effect on your son and his current situation. I can see why you and his team are concerned with him withdrawing like that. He is aware of what is going on and he remembers what happened with his dad. Poor guy. Does he open up you? Anyone else? He is going to need you and his supports in the coming while.
Talk to your family doctor about a referral to free mental health care.$350/hr is an unruly amount! Keep up the self care you are doing!
Live, Laugh, Love

Re: Son with disability

Posted by VioletFlower on Feb 17, 2020 10:56 am

jorola‍ , He has been very open with me and he told me about his enlarged testicle and allowed me to get him to the dr and the ultrasound but it took some effort to get him to let his team onboard. They are now fully engaged and very helpful to us with this process, however, I feel he may be concerned about me because I have told him about my depression so he may not feel as free to talk about what he is going through with me. He did talk openly to his sister about not being afraid to die etc.  She and the team may be more of this support for him. A member from his team visit him everyday and I call him to check in. He will come for supper and to spend the night as surgery is in the morning and a 45 mt drive to the hospital.

His dad and I had been divorced for many years but I did the best I could to help them through his illness and death. I worked in group homes as a caregiver and our population was older and a number of them had also died in the last couple years of my work so I have had my eyes opened to loss on many levels. My insurance that I rolled into from work only covers $500 a year for a psychologist only. Sheesh! I thought that $350 must be the going rate now and the receptionist offered me to work with a student for free. But that was over a week ago and I have not heard back so I’m moving on and will get an appt with my GP for next week or so hopefully.

The art I engage in is just for my pleasure only at this point but I may have to start getting some income from it to cover my supplies. My guilty pleasure is buying art supplies haha. I’m looking at working with leather for possible income and was hoping my son would enjoy doing this form of art and craft too.

I just watched Charlottes Web. What a delightful movie!

Thanks again for all of your support. I really appreciate it.

Hugs for you and your family.



 

Re: Son with disability

Posted by VioletFlower on Feb 17, 2020 12:55 pm

ACH2015‍ , Yesterday, I sent my son the links you posted. I hope he looks through them at some point if he has not already.

The best to you and your family. It is Family Day Today!

Re: Son with disability

Posted by ACH2015 on Feb 17, 2020 2:36 pm

VioletFlower‍ 

Good to hear. Like many have suggested, it will be a team effort that assists your son. As I said previously, sometimes its best as the patient or caregiver to talk with a therapist that understands the cancer related issues. I know it made a difference with me. I found the social worker at the hospital better and of greater assistance than the regular therapist.

Happy Family Day to you.

ACH2015

Re: Son with disability

Posted by Cobble223 on Feb 18, 2020 9:25 am

Hi VioletFlower‍ ,

I'm not sure where you are located, but my cancer centre  in Toronto has a free "caregiver clinic" where relatives of the cancer patients there can see a therapist for free. I am the patient not the caregiver, but it was suggested to me for my spouse. I found speaking with someone who is used to dealing with cancer to be very helpful with health anxiety etc... Perhaps your son's clinic has a social worker or patient navigator who could tell you if that is something that might be available there?

All the best.

Re: Son with disability

Posted by MCoaster on Feb 18, 2020 12:22 pm

VioletFlower‍  You and your son are in my thoughts today.  From what you say he is prepared and the fact that he has good caregivers and most of all a caring and involved family will be a tremendous help to him I am sure.   You know your son well and, having an adult son and daughter,  I know how they try to save worrying me.   (The trouble is I have a very vivid imagination so much prefer openness but I know it is done through love).

I really liked your art and can see what an outlet it is for you.   Just a thought about supplies,  often thrift stores are a source as well, of course, are the dollar stores.

Please when you have a moment let us know how things go and how you are.

Warm hugs.
Margaret

Re: Son with disability

Posted by VioletFlower on Feb 19, 2020 12:13 pm

Hello Everyone, 
The surgery went well! He was very nervous but made it through like a trooper and even said it was so fast it was almost like it did not happen. Yeah, the pain killers were doing their thing. He was glad to have the cancer removed from his body and looks forward to fighting this with whatever it takes to stay on this earth with us and all of the family are fighting right along with him.  Now I’m going to cry for a bit.

What makes me angry is that 2yrs ago he went to his GP about his enlarged testicle and was told it was normal. He had a physical with his new GP just one month ago! I know very little about the male anatomy and do not have a partner to discuss this with but don’t they check your testicles during a physical with a hold and cough procedure or something?! Apparently they removed a grapefruit of a testicle.....may be an exaggeration but my son just told me yesterday that it was huge!

@‍ ​ACH2015‍  - thank you for the note about the social worker with cancer experience being a good fit. I think you are right that this may be the best route to go. My son did go through the testicular cancer link so thanks for sending that. It’s so hard for me to think of what’s needed at this point in the process.

Cobble223‍ - Thank you so much for telling me about the clinic possibly having someone for the family members to get support from. We were in Peterborough for the surgery and I’m assuming any follow up care would be at the cancer centre at that hospital. I went into that clinic just down the hall from day surgery and grabbed some brochures but have yet to read them. I don’t know if he will have Toronto as a choice but I used to live there and can’t help but feel the best treatment may be in major city centres.

MCoaster‍ - you warmed my heart when I read your kind thoughts yesterday before we left for surgery. My brother was going to drive with me but had to attend to something else, so my son and I drove through the worst weather and road conditions I have had to drive in since moving back here. I had white knuckles by the time we arrived but we made it right on time. They had moved the surgery up by one hour so we had lots of time to wait.

I have used second hand art supplies quite often and never refuse a donation. A friend has just given me her moms art supplies that she did not want to take with her when she moved to a smaller apt from a large house. Now I have more stuff to unpack and organize but it’s fun stuff! Second hand store shopping is another guilty pleasure of mine but I don’t spend money on anything else and made myself a rule that I can only purchase tiny things or art supplies. Haha. Art making is my outlet for sure and what’s nice about art journaling is nobody has to see it and you can just cover up a page with something else if you don’t like it! It’s more about just enjoying and playing with colour, shape, texture and different art supplies that peak your curiosity. Lots of great you tube videos for free instructions and how to’s.

jorola‍ - I’m really struggling with how much do I step back and let my adult son do what he can on his own and when to intervene. It is much harder when it’s your own son. He is always given his medication by the team and I administer it when he is with me but he balks a little about this because I don’t normally have that roll with him. So I filled his prescription for Tylenol 3s and he wanted to keep them in his pocket. He administers his OTC meds on his own and some of his own meds but he has never had these before. So I left them with him to take after telling him about them and I’m not sure if he took 4 at once or not because he said he only took 2 so I took the bottle out of his coat and will talk more about this when he wakes up today. He was up most of the night and had little sleep the night before. This is where cognition becomes a concern and is the hardest part for me to cope with. Thanks for listening!


 

Re: Son with disability

Posted by MCoaster on Feb 19, 2020 2:06 pm

Wow VioletFlower

   I am so glad that things went so well.  Your sigh of relief made its way over the Rockies and you must be proud of your son.   Having him have to go through the surgery was hard for you but you also know that, with the right support he can deal with such eventualities.  Monitoring the meds. is difficult without upsetting him.   Would he be open to using one of the containers which have daily sections?

 Can relate to Ontario winter driving and gauged how bad the winter had been by how many times I listened to Gregorian chants as a way of keeping calm.   Also requested the chants when I was asked to choose “music to listen to” during my cataract op. 2 weeks ago!  A different art form from painting but one I use a lot.

Please keep in touch.  

Look after yourself and happy painting.

Hugs.

Margaret

Re: Son with disability

Posted by ACH2015 on Feb 19, 2020 3:35 pm

Hello VioletFlower‍ 

Thank you for the follow up, and happy to hear all went well with your son's surgery.

The procedure you mention (hold and cough) during a male physical is something I've not had personally as part of a physical - unless there is pain or other issue mentioned during the physical consult.

Happy to help, and keep in touch down the road. What follow up has been arranged from a cancer monitoring perspective? Perhaps more information will come your way after the pathology report is completed and shared.

ACH2015

Re: Son with disability

Posted by VioletFlower on Feb 19, 2020 7:45 pm

ACH2015‍  - Thank you for letting me know that genitals are not part of regular male physicals. My male family members don’t have checkups and I suspect that may be the case for many men. The doctor said he would follow up with a phone call to my son so we wait.....hoping for the best.

MCoaster‍  - No a pill box will not work. He just empties his blister pack for the day onto the table after staff administer his important meds for the day. It just is. Music is an enjoyable art as well. Keep enjoying this. My daughter likes to sing in various choirs. Hugs to you too!

Re: Son with disability

Posted by jorola on Feb 20, 2020 2:48 pm

Hi VioletFlower‍ 
Sorry I am late in replying.  From reading what you have said, in my opinion, continue to treat him like the man he is. Just explain to him that these meds come with serious warnings. Ya maybe they might make ya feel good BUT there are consequences and speak to him about overdoses and addiction. Let him know he can reach out to his sister or team for more info. That way he knows it is just not a "mom thing." Does he watch the news? If he does remind him of the stories on the news about overdoses. Then I would leave it.  Like any good mom you are going to watch for signs. Let his team know he has the med. They'll watch too for any concerns. Sounds like you have raised a good man there. I am sure he will be ok. However, like any mom, your child (regardless of their age) is sick and you worry. We got ya. Hang in there. He'll make you proud.
Live, Laugh, Love

Re: Son with disability

Posted by VioletFlower on Feb 20, 2020 9:02 pm

Thanks for taking the time from your busy life, jorola‍ !  You folks are so wonderful for all that you do.

Your words were just what I needed to say to my son. He slept right through the day and night and again to day with just getting up to meet his team staff for his meds at 10 am this morning (I filled them in) I have checked in with him regularly and offered pain meds but other than one T3 at 10:30 he just went and laid down until 3 pm this evening. It hurt when he coughed and he was trying to go without pain meds. I was able to get him to take fluids he has just started eating again.

When he got up this morning he said he had a sore throat yesterday and I told him that was from the codeine so we had the conversation like you suggested and it made a difference for him. So he has just had three T3’s today and I also gave him ibuprofen a couple of hours ago letting him know that it can help with any inflamation and pain. 

He is staying the night and the team member will stop by tomorrow morning to give him meds. He was due to have regular bloodwork which is a monthly procedure for him but they said he could do it another day if did not feel up to it so he chose that option. 

He is very clear in his thinking which has not been the case for the past few weeks so all is good for him so far! Thanks for listening. 🌺

 

Re: Son with disability

Posted by jorola on Feb 20, 2020 10:20 pm

You are welcome VioletFlower‍ . Just so long as he is not afraid to ask/take the T3s if he needs them.too. Don't want him in pain needlessly either.
Live, Laugh, Love