caring careers here.com providing connections to the lives of Aging motans by helping people discover careers in caregiving more information at caring carear here.com I can't even imagine our lives without Josh ideally my caregivers wouldn't be my parents as Joshua has gotten older unfortunately a lot of our life is things we we've given up we can be bitter about it but it won't help anything so we have to figure out how to manage it because of Josh's physical needs and Jeff's increasing physical needs my concern is that I'll end up having to choose who I'm going to take care of and who's going to have to leave because we've got to figure out where everybody's going to live hi I'm Melissa Fritz host of inside senior living as a senior living consultant during the co pandemic and a daughter who lost her father to alzheimer's dementia my inspiration for this work comes from a deeply personal place I've seen firsthand the challenges family face when navigating the complexities of Aging over the years I've dedicated myself to equipping older adults and their families with the information and resources they need to make make the best decisions whether that means receiving care in their own home or making a move to a senior living community and as we all age this need is only going to grow that's why we're on a mission to spark conversations support caregivers provide valuable resources and promote a more age-friendly World meet Rebecca and Jeff a couple in their 60s who are confronting their own aging while also caring for their adult son Josh who lives with cerebral paly Jeff's worsening Health has begun limiting his ability to help with Josh's care their story is like many aging Americans who have children with disabilities fortunately Rebecca and Jeff are tapping into their strong faith and Community as they search for options when we got married we moved from Madison Indiana to whole River Manitoba on the Eastern side of Lake Winnipeg and we were just to the house had kids in Love no running water he the first the first winter we were without running water and we just did we just did life together and so then in 19881 and Joanna was born but that meant a drive to Winnipeg so yeah about 2 and 1 half hours away Winnipeg and so she was born there and then Ben was also born there and that's that's where we had our first first two kids my siblings are six and S years older than I am so in know one way we're almost two different families because I was always a chapter behind them in life Rebecca is dedicated to the Lord and Rebecca is immensely dedicated to me and the family immensely dedicated she's a very selfless individual that's the greatest accomplishment in my life is is being wise enough to see that this was the woman that I needed to live with for the rest of my life at the time I was working part-time I was pastoring a church and working part-time as an emergency medical technician at an ambulance and we did quite a bit of air medac work and I had just done a a medac and I was at a a rural community about 60 Mi away from high level and my boss called and said I need you to fly back right away and I said well there's another metac why don't I just take it since I'm here she said no I need you to come home right away I said well no you don't understand there's another Medevac here and finally Lisa said to me our dispatch said your wife's water broke you need to come home and take her to Edmonton so we have we two children at home this at this time so we we have thankfully really great neighbors we had friends that look after our kids and my wife was still about it was 29 weeks 29 weeks so we were 29 weeks and so he had to go back up so you're kind of prepared and he was 3 lb 9 oz they they cut all the tubes for 2 lb and he came 3 lb 9 oz which was really part of fitting in the palm of my hand and so um that first year you you don't really know right CU they're so preey they you have have time but we knew pretty early because he was our third and I actually went to the library and I I found a book and I said Jeff this is what Josh has it's you teral policy I said this is what he's doing this is how he's acting and Jeff's like that's fine let's just wait and see what the doctor said so he's a year old we have our big consult with these big do important doctors and they said well we suggest that you put your child in a a care system and that you just um forget that you've ever had him and Jeff at that point said God gave us this child and he will help us take care of this child I'll never forget that as long as I live because I can't even imagine our lives without Josh and I'm so thankful for Jeff immediately just saying this there's no question here there this is the way it is the parents decided they wanted their kids to explore Eastern Canada and in Eastern Canada there is a spot called the bigest one the largest title ships on Earth and my siblings were all going home to go down into the title Bas because when the T when the ti comes out you went down N9 flot stairs and you could walk out to where to a place that would basically be underwater within the next few hours and my dad was committed that his disabled son was going to get the same experience as his a body children and so he carried me down nine or 12 flights of stairs so that I could see the title B isn't very funny and looking back on that that may look like a a small thing but but so many dis dis people live small lives live nail lives live truncated lives and that was an area where my dad sacrificed his body he sacrificed his own wellbe he sacrificed his comfort just so I could have the same experience as my sibling everything we do we have to think about about how will this impact Joshua We Knew by the time Joshua was a year old we need to move out of high level Alberta it's just too it's just too far to drive and at the time I was thinking about going back to school and we looked around and we decided on Windsor Ontario because there was good Services there and I could drive across the Ambassador Bridge and work on my degree we wanted to stay in Canada because Canada had we didn't have we wouldn't have had healthc care in the States but every time we've moved since then there there's always the question how would this move impact Joshua and can we care for Joshua now when he was smaller it was obviously much easier simply because we could physically physically you know lift him after meeting Rebecca and Jeff it's C how much they care for their son Josh but they can't do everything alone Rebecca's biggest fear is that Josh won't have the help he needs particularly with the current shortage of home healthcare workers the fear of Josh not being taken care of properly carefully because neglect is such a huge concern and problem for people in care situations so when I reach out to an organization that provides Services I'll often get your son's needs are so high we cannot care for him and so I told Jeff one day I go I wish I could say that his needs are so high I can't care for him well will you help us so that's um The Journey right now is that the the service providers the agencies either don't accept new um clients or they're not able to meet the needs of the clients the work course challenges in our long-term care profession are significant we always have been a profession that has been challenged to find workers the covid pandemic just completely deflated our Workforce we lost over 130,000 workers in long-term care Across the Nation we've had some recovery but it's slow um and the demographics just show us they're just are not the people and so that puts more stress and more um responsibility on those informal caregivers those folks that aren't necessarily the paid workers ideally my caregivers wouldn't be my parents no no no adult in their 60s should be tasked with full-time caregiving but in a lot of ways my parents are still my caregivers now I do have guys that come in most of the time um right now I have guys that cover mornings and evenings I don't have guys for overnights and I don't have guys for weekends because this the job of disabled caregiver um appeals to people who are in transition I only get I only get the average caregiver for about 6 months and then once I once uh PCA says this is my end date it'll take me anywhere from a month to 3 months even longer in the case of the pandemic to find someone who can actually do the job so it really is you use the guys you can for as long as you can I mean I'd love to say that I have a full productive life but it's very it's very very dependent on the quality of guys that I have you know there was a time when I could turn away caregivers who didn't speak English or who weren't respectful but as because my parents could take up the slack but as both my career has expanded and as their their own physical uh capacity has diminished I I'm not able to be picky despite all our best efforts despite un un conscionable unconscionable sacrifices both in time and in money and in health on parents my heal has been put at risk because if they can't give a shortage while finding care providers for Josh is a constant challenge Jeff's health is another concern managing a severe diabetes adds yet another layer to the responsibilities Rebecca takes on each day we were going to cut wood today as part of this cuz I like to cut wood but I'm not cutting any wood for a while until my foot heals up because of my diabetes 3 weeks ago I made a trip to Alaska my first time I I've been battling a foot infection which I thought that I had mastered but all the walking around it got worse so that when I got back on Thursday I needed to make an appointment with my podiatrist by Saturday my foot was in pain I went to the Urgent Care thinking I would just get a prescription for an antibiotic they said no it's probably into the bone we need you to admit you to a hospital for IV antibiotics the long and the short of it is the next Tuesday I ended up having my left pinky toe amputated the benefit to being in the hospital I was in the hospital from Saturday to Thursday was that in the hospital they had a hard time regulating my sugar and so I spoke to diabetic people I spoke to doctors and I have gotten a continuous glucose monitor now that which I'm starting to use and we are being more aggressive in my use of insulin and so we're trying to aggressively manage my diabetes if it took losing a little toe to get the diabetes figured out we're very very thankful because in the long run that's critical for the person with type 2 diabetes uh watching their blood sugar is going to be really important I've heard it said that not monitoring your blood sugar if you have type 2 diabetes is kind of like driving your car without the speedometer you have no idea how fast you're going you have no idea where you're at so monitoring that blood sugar is so important and they're going to need to make diet changes too of course everything drives up your sugar carbs turn to sugar and sugar is your enemy when you're a diabetic the two things that affect your diabetes are diet and exercise but with my foot being infected the exercise goes out the window and then if you sit around you atrophy you your your strength actually diminishes because you're not doing the things you're accustomed to doing and all of the sudden you become less steady on your feet you become weaker and getting up and things like that and you say well how did I lose this ability and it's because of the impact of diabetes and and of course the biggest thing that weighs upon us is care for Joshua when we can't do that anymore and so when things like this happen with my foot that just makes Joshua's care more complex because now I can't help re Rebecca to the extent that I want to help her now to Rebecca's credit she does a great job and she's done a good job helping me take care of my foot and take care of Joshua and even plan meals that are diabetic friendly but she gets Weary at any but the conversation between us often is um do you recognize that you're not able to do this anymore and that that process right there takes a little bit of time like I think six months ago Jeff would have said I'm fine I can you know but now he understands and accepts I'm always looking for new resources there's a resource called dis ability Hub that you can go to and they're great but nobody is able to actually take your information and input it somewhere and then spit out the resources now that we're seniors I'm realizing there's other things out there it's like going on Medicare we realize oh and now I can be have silver sneakers I always say it's a puzzle and we're trying to and so we have a new puzzle piece with our aging to try to find we we're finding we try to need to find new puzzle pieces okay we're looking okay so have you um reached out to senior linkage no I have not so you're going to get referrals um provider resources and then there's a another tab for additional resources sure that's really cool planning for the future and doing the necessary research can make a huge difference especially when dealing with complex caregiving situations like theirs so we know older adults want to often most often stay at home and live in their community in their neighborhood with the people that they that surround them who they care about and care about them and where they're familiar right so that's just it's just what we all want often as we grow older and really thinking about how to do that and how to plan for that um really important to plan early right and to share to get input on that plan and to share that plan so we all might make assumptions about who's going to care for us but we certainly better uh better have conversations with the family members or friends or neighbors or even the organizations that we might might turn to so reaching out really early um to discuss a plan and formulate a plan would be really important we just recently redid our Wills so that our assets can be used by Joshua without affecting his Services I mean nobody wants to talk about the day when both parents are gone but we have to we had to be proactive to make arrangements so that Joshua would have what we have left for him to be used for his living because of Josh's physical needs and Jeff's increasing physical needs you know I think I shared before my concern is that I'll end up having to choose who I'm going to take care of and who's going to have to leave but if we could get in a different situation where I wouldn't have to manage so much stuff um I would love for my life to be about relationships and not about the stuff but that's going to take some time and work and effort and I think I told you I'm going to start putting our names on waiting lists because there's waiting lists are out there and I just need to be proactive and get our names on them for different Living Spaces one of of the challenges we faced and we faced it for a long time is to maintain a marital identity when every conversation either includes Joshua or is about Joshua and this is the life the Lord has given us the only thing that makes me sad is that Josh does consume us and and I can't figure out how to disengage from being his Our Lives being consumed by his life and I'm we're ready for that but we we're not there yet Colin thanks so much again for being willing to learn these things and ask questions as you need to looking back I would say my mom's been my primary caregiver for the last four years and because because my with my Dad's health challenges he's just not been a able to do the work and so my mom never has a never never has a day off hardly like she may get a few hours off here a few hours off there but until we get good staff who can do the overnights she never gets to leave never gets a weekend away with my dad and and she's just a con the Conant hard worker our anniversary is the first weekend in August and our caregiver guys have said they want to make it possible for Jeff and I to get away so even if it's just two or three nights um the very first place Jeff and I lived was in Northern Manitoba so it's about an 8 hour drive and we'd love to go up there and see the people see the you know kind of re those relationships are all intact but we would love to see them so that's our kind of Hope dream goal while planning for Josh's Future Care is a top priority for Rebecca she also recognizes the importance of taking care of herself from working out to connecting with the support group Rebecca's found ways to stay strong both physically and mentally for my physical health and Jeff and Josh both are very supportive of this I um I have had physical therapy to help me know how to use my body better as a caregiver and so then I'm in the pool at least try to be twice a week my doctor told me uh this year she says you can't just be in the pool you need to walk on land for the bones so walk on land um breathing exercises it's it's we talk about it takes so much time and energy to try to take care of ourselves which is annoying but if we don't do it if I don't do it I pay for it when I was younger I exercise more at home with weights I had elliptical and I would do everything everything in the house escaping which you heard me say I still like the Escape just helps be so many ways like and I escaped to Bible study I escaped in the pool I escaped for a walk I escaped grocery shopping but as a caregiver getting out of the moment it out critical so you guys caregiving taps our energy emotionally physically I really enjoy the opportunity to work with other moms of disable children that's a real heartbeat for me just the privilege of loving on them and and as a 65-year-old mom saying it is hard it is difficult but you can do it what are some things that that give you Joy as it relates to caregiving disability being part of a family that has extra needs what gives me joy is connection like this but also when I think about if Josh is successful so I think we would all when our our loved one is successful in anything you know any treatment plan any Milestone we definitely that that brings me joy despite the obstacles he's encountered Josh continues to achieve his personal and professional goals the principal of his public high school bought him a Game Boy and his first game we used to tell Benjamin and his sister when they were early playing games before Joshua that you're not going to spend the rest of your life playing video games Joshua is very pleased to remind me of that quote and say Dad I'm going to spend the rest of my life playing video games and he's gotten into the world of video game Consulting and he's been very successful and he's been successful he should finish his PhD hopefully this year in human factors and ergonomics so his his nonprofit um employs other disabled people in the video game industry and his Consulting business helps developers and producers make their game video games accessible from an early age I I knew that I was different but I also knew that that wasn't an excuse my parents expected me to have dreams to build dreams and to taste dreams there's no such thing as a difficult day for me or for anyone else with a severe disability you do each day what your body allows pin is inevitable disability and if you let it it can be more disabling than any medical condition and so I have tried to build my life around the concept of on the days when I can work work as hard as I can as we celebrate Josh's accomplishments and the resilien he shown it's a reminder of the strength that can emerge from challenging circumstances strength Rebecca knows all about as long as God blesses me my mind with being able to manage and do work and my body to do work and our re our financial resources are fine um we can continue moving forward or attempting to move forward the opportunity to just share you know that we really aren't as isolated and alone as we feel there are supports and and helps if we work at it as we wrap up our time with Rebecca and Jeff we've witnessed their incredible dedication to each other their family and especially their son Josh their Journey highlights the harsh realities facing older adults who have children with disabilities these families clearly need more comprehensive Community Services and our support next week we'll meet Cammy who is also juggling multiple caregiving roles and on the verge of caregiver burnout join us as we Explore her story and the lessons she has to share about finding balance and facing incredible [Music] loss production of inside Senior Living is made possible by Elder Mark Senior Living software helmouth and Johnson Lotus Pharmacy and kickernick gallery [Music]