so maybe we're very happy to have with us is a certified professional coach and caregiving without regret expert on he's presented several of our cars in the past and wonderful michael support and one comment which speaks volumes that michael is like a warm chocolate chip cookie that after the delight and purpose of comfort food calories he's also written a book called the accidental caregiver i just today close to forty percent of caregivers in the us are male ok so we're not so unusual it's about thirty percent rising for every person over the age of currently there are seven younger people to care by twenty thirty  since the microphones right here i'm going to just use my voice my name is gary my wife had a major hemorrhagic stroke eight and a half years ago at the time we were living in different parts of the country i was living here in boston starting happens the program on the road i'm in hospital and my wife was in burlington vermont fortunately we had a dome in there that was very smart got my wife to the hospital but despite getting some medical care relatively soon although they weren't quite sure was a stroke at first there was a little bit of hesitation  brain as it turned out it with very difficult because she was ultimately in a coma for over four months and actually sort of trying to sort of figure out what was going on and part of our journey was making all these decisions on the way and one of the first decisions was meeting with the naptha system and and our surgeon in regard to deciding whether to keep her alive or not because i things had been so severe and they were saying that that was the juncture of being needing to be aggressive or not and i decided that it was just not enough information so i said let's do that and which included a feeding tube and you know for her to continue to you know have help in regard to to brief me after she got out of the coma i think our next challenge was what went to doing to bring her back to boston but i didn't know we were coming back to boston for the last time there was still lots of don't know whether she would live or not we went through the rehabs and i decided to change kind of my own contacts with with her and you know oftentimes you know in the years of our marriage i would always have these hoops for her to jump through and expectations and i decided you know i need to let go those expectations i don't know what she'll be able to do or not do and that we just needed to sort of literally live in the moment and for me this was really an incredible opportunity when she was in the coma i was praying by her bedside when i just sort of asked her to give me a second chance i have not always been that this double husband i love it when people say oh you're such a great husband i sort of said well getting live with me for the last twenty five years but having this second chance really did open me up and i think also you know i don't know about the rest of you but certainly i always thought it would be a tomorrow and in very many ways what was so great about this was you know guaranteed tomorrow and so you have to sort of see what the challenges are with the placings our hope both of those are at least i've tried to hold both of tenuous link since then we've done rehabs we sure was in a nursing home for about three years we as i said we didn't have a house that we lived in so i'm trying to sort of figure things out regard to all of that and within the last couple of years we actually moved into an assessor ball park and that we now live together again after being after me to being very committed to her but just being in her being in a nursing home we were going elsewhere she has severe aphasia which means that she can't communicate very well in regard to words and you know i i sort of used the equivalent of it's like a hard drive getting wiped out all over communications gone she was an incredibly articulate woman she still is but she expresses it in different ways  d one of the things that she didn't bring which products but one of the things that she does is make her own little car and this morning before i left for the conference you made this  card just as gary and she says i love you p s which is the initials of really when i called her for many years so i'm profoundly blessed to have her still in my life and that's not to say that there are incredible challenges challenges of to take care of her on a on a daily basis and she's paralyzed on one side so she really can't do much you know in regard to being independent we've got her power wheelchair and all of that but in still struggles and i think everyone in this room recognizes individually what those struggles are whether that's with a child or a spouse or a parent or a sibling and somehow sort of trying to as as so many people i think try to do doing the best you can and also knowing that you can read some of what has happened i so agree with the fact that we've had lost opportunities but even more so i mean i'm very lucky that i'm able to still have a wife with her and appreciate being able to share that hope to hear some of your own stories which are unique as ours up here my name is mark i met my we've been married twenty three years ago fifteen of those years she's unable to care for herself up until recently she's lost the ability to walk she has huntington's disease which affects memory and brain cells loss of muscles operative skills she can't talk she struggles talk we have in place the pca which is that our house couple times a week which has been with us for twelve years which really is they've developed a relationship even i don't have that i wish i had that relationship with her but she has rebecca and so last year i came to this function i learned quite a challenges i found is imperative or is not necessarily particular to being a male peer giver but more is being a caregiver in general where it doesn't matter whether you're male or female i oftentimes  say when did i suddenly become stupid you know when when i've been dealing with profession fortunately i come back with twenty five year experience in advocacy skills but especially you know we we went through a very very tough year in this last year my wife got hospitalized fourteen times in less than here and and the ba went up sort of facing with doctors didn't feel like they have a better way of approaching this you know you know giving or going to biopics when she's had a very bad infection you know one time i sort of said to a doctor i i didn't want you i don't want her to have antibiotics and he said if you don't chill doc and i said seriously just play the death card with me really and so i think we face that we are all sudden the experts coming whether that's the doctors or even social workers that actually have known less than i have in regard to the system and so i constantly feel we as caregivers whether it's women or men are sort of facing that and in very many ways we need to be at least for my perspective we need to be our own advocates we can't rely on the medical establishment or social workers or any of the others just because in very many ways not that we know best but in very many ways there's no one who is going to be more intimately involved in in in the working with your particular situation so especially in regard to caregiving it's sort of like somehow we've lost our identity as being people that have been over the world and are capable of being able to really make the kind of informed choices that we need to make so tru disappearing i was at a loss i just all the sudden realized i had to do what i would normally do for myself but for somebody else and taking over that responsibility was  a hard burden to bear at first i was concerned about finances a place to live and being able to make all of this work all of ones and on family friends those things change but there's always this right now i have a really good network of support that kind of backs me up when i need help as far as difference between being a male caregiver and a female i don't know too much about that because of always about worse and worse than her disability i learned how to compensate and it's been a basis and then they provided many were choices so there are others that are willing to help and let themselves go back where they can do based on their time and talent so the you'll get about doing that because it doesn't all have to be that direct support responsibility but you needed to rescue them so my apologies about that i think the question was about respite and i think i have two thoughts about that when but i have also got an incredible different situation then a lot of folks that i've encountered which is the fact that even though my wife can't necessarily  use language and certainly you know when we say we go for walks she's in her power wheelchair and i'm walking but we've got these incredible we still share a  wouldn't want we work you know i've become sort of the king of free events given that we're on a limited income and we get to do things together and that to me has been a real blessing in regard to just being able to sort of be able to to connect but i also realize that sometimes that isn't always enough and certainly within this last year i probably struggled more than i've ever struggled before both with depression and anger i felt like your question earlier about asking for help sometimes it's very hard to do that  just due regard to our own her pen city of doing that him so that's been a struggle for me also where one child for help and the other question but you know ultimately my hit on this is either you ask for help or you ultimately end up being on bended knees because you have to get help there is no choice about it i kept thinking i can do this on my own pretty much except for a little bit of help but it is a struggle it's a challenge and i think you know so i don't have any incredible pearls of wisdom about that other  than being able to sort of recognize that there are these incredible challenges and struggles and being able to find those moments however that is whether that's you know in regard to a relationship with you know the person parents are or whoever is in that situation who's sick or you know trying to find pieces and i think what you were saying earlier is absolutely true it's sort of like you can't you can sort of see it is this you know whole peace it's it's being able to take moments and being able to hopefully be nursed enough to continue along with the journey but understand that you know the journey is at least for most and i my wife will be a lifelong journey until one of us is gone  last year still wanted to be on that pulse and i bought a cameras for the house so that if i was at home by myself and i needed a moment do that because if i don't i don't always ask for help and would people offer it sometimes i don't take it so by using that list and gritty on a little time for myself that working coming home and working you need the time you need to break away a moment something that is your own so i ask for help list tends to be filled with all the things we have to do the responsibilities we need to get done the medical appointments we need to attend the calendar is very rarely filled with things that we enjoy it when we enter the caregiving role too we tend to processing the conversation with them about the fact oh you know you are too maybe it's not realistic that you would you deal with all things in your retirement now were three times a week but once or twice during the summer might be nice to find somebody else who can step in and provide some time but again it was all for his wife all he could see was the deal we need that he needed to get on with her and it was understandable when they said you deserve it too and i think your wife would probably want to do that you're enjoying times not the server wait several days a week and we have a few minutes well as we did this last roundtable i was wondering if each of you think about one tip that you could share as we get ready to close do you get ready for what i'm sure that you would love for the audience to take understanding that made me go from the darkness to light because it just allowed me to sort of be able to make informed decisions in regard to those escape and moving moving  forward and then i think the third for me is the small moments you know you know as i've said a couple of times my wife doesn't have sort of language but we were o  at castle y one last week taking a walk and she just turned to me and she'd say no i ducked out there and she said duck it go and it just it just is you know whether it's a card or a word or just a moment to bathe in that and that's not to say that i don't being able to have a one term harmer station with her or some of the things that we are able to do is a couple prior to the stroke and those lost opportunities but just being able to to to have those incredible moments and let those just be the moments that they are which is