My mom is in respite care right now for five days and I feel like I have just been released from the prison of Alzheimer’s. She has the disease but we are all suffering from the effects of it. Respite care has been a HUGE blessing for me in so many ways.
Thank you Dr. Natalie. I am looking into options for me. My husband has vascular dementia and it has escalated. He requires more care from me. I am physically and mentally exhausted. I have a caregiver twice a week 4 hrs each day. I have come to the realization that I must look into more help. You have helped me tremendously and I’m grateful.
I understand what you're going through Vivian. My husband has vascular dementia too. It is a lot of work and I'm very tired emotionally and physically. Take care and I hope you receive the help you need.
This is so timely, I will leave my mom in respite care tomorrow because I’m having surgery. I have also scheduled respite care to go to visit my family abroad. I would have loved to take my mom but her dementia and her walking limitations will be to much for her and myself. I do have to say that I throughly checked a 4 respite care centers. I was horrified to read the reviews on Yelp and Google. My mom’s care manager suggested the fourth and it wasn’t bad. As I toured the facility I felt comfortable to leave my mom overnight, this is also a test to see if my 10 day vacation that I so desperately need will be ok. One other thing I wished you spoke about more is “the guilt” one has when they leave their loved one to take care of themself. I’m trying to deal with it. Thank you for your videos! A former Care participant of your program.
I take care of my mom and you have to stop beating yourself up when you leave them because you need to recharge. I wish I only had the opportunity to recharge. It will be good for you to love yourself knowing your love is a battery that never fades. I will pray for you as well. It is so tough taking care of elderly parents.
I’m new to this, and SO GRATEFUL to have found Dr Natalie’s tips! I was SO OVERWHELMED after only 1 week of caring for my paranoid elderly mom. Now I have a fresh new perspective thanks to Dr N - and so much of the pressure I was putting on myself has lifted. Unlike many, my mom suffers from delusions and hallucinations - BUT - can still (barely) do most of her ADLs. And I NOW know that I am NOT RESPONSIBLE for curing her unique beliefs and just can spend time and assist with things that she allows (like doing grocery shopping & errands and doing her laundry and helping with cleaning). She also asks me to help her in the shower - so really, I see that I have it quite easy.
My 87 yr old daddy has mixed dementia ( Alzheimer’s & vascular, due to 20+ yrs of TIA’s ( the most recent one last week) and an ischemic stroke in 2020). Since he had the ischemic stroke his disorientation, paranoia, delusions and confusion has escalated. My goal is to get him to the next stage where he “ won’t know what he doesn’t know.” He’s pretty close to that point now. He is losing not just short term memories but even most of his long term memories. But he is acutely aware of something being wrong with his brain and he is very scared , especially at night. But my husband and I have basically put our lives on hold for the 7 years daddy has lived on our property ( especially full time these last 4 years). So yes we are so ready for some respite. Daddy has long term insurance that allows me as his caregiver up to 21 days of respite. So one day we will get a vacation 🙂 10:58
I will have a person come in once a week and that will give me some much needed time to do shopping and appointments. Our family helps, alot but they all have jobs and families, I certainly don't want to burn them out either. When I read your blogs it helps, THANK YOU!
I’m looking into this for my mom, I’m way past burnt out. I don’t have anyone to help, do you find one day a week is enough? 4 hours? It is expensive out of pocket but I need it
Thank you. My spouse is going to a week of respite for the fourth time this week. Each time has been difficult. He does not like going and usually sulks for a week in advance. I wouldn’t tell him but his ipad is linked to my phone and he can see calendar appts. I’d turn it off if I had time to figure that out. He also goes to a day away program 2 times a week for about 6 hours. No guilt here. He loves it. I can get stuff done, rest or have lunch with a friend. We have a psw who comes for 1 hour 2 times a week for personal care. As the workload gets heavier and I deal with my own health issues respite gives me opportunities to just breathe.
I took my husband to a group dementia day care facility. He refused to join in the activities and even tried to break a window to get out. We tried 2 days - after 2 hrs one day and 1-1/2 hr another day, they called me to pick him up and said they just could not handle him. He was their only failure so far. Somehow, I don't think an in-home caretaker would do what I had to do today. He pees on the bathroom floor and I have to clean that up at least 3-4 times a day. This morning, he defecated all over the bathroom and all over himself. I not only had to clean up everything .including him , but give him a shower. Showers are another of my main problems, because he is adamant he will not get into the shower. He will literally fight with me when I try to get him in (oh, yes, I've tried most of your suggestions about how to do this). He had also messed up the clean sheets I put on just last night. So, I had 3-4 additional loads of laundry today. I keep pads down on the bathroom floor, but this just went right through them and I had to throw one away because it couldn't be cleaned. In fact, the pads do not really work all that well and I have to clean the floors of 3 bathrooms 3-4 times a day. I don't believe there is any way I could force him to spend overnight in a facility to spend time there. He would fight them and he is truly powerful, especially in his arms. I'm truly stressed and get no help from anyone.
I’m sorry to hear things are so hard right now. I’m not an expert, but many counties have resources that might be helpful. You deserve some good support right now, so make sure you get it for yourself if you can. You may be faced with some emotionally tough decisions, but you shouldn’t have to deal with this alone. There are people out there - probably locally - who can give you support and access to resources. Please take care of yourself. It is NOT selfish to do so.
I have been there, my husband had urinary incontinence and became constipated and had rectal incontinence. He did not know he had to urinate and it went on for two hours. All over the couch,the carpet, the kitchen floor. It was horrible but my son who was an EMT was staying with us and helped me. Call your fire station for help. When we got covid they came 8 times. He would fall and couldn’t get up. After that he ended up in the hospital with kidney failure, then rehab and I got 10 days of rest and home health care. That’s when my son came to stay. I could write a book about 2022. 4 hospital stays, rehab, kidney failure, incontinence and yes no rest. Just slow down, your doing your best.
I am trying to get respite now for my sister withDown syndrome and cognitive decline for the last 1 1/2. I haven’t had help since I started taken care of my sister in April of 2018, and it’s not easy getting it. Thank you for your videos.I follow you and have learned a lot, but I did not know about the aging Downs Community and Dementia, but stubbled upon it when our Mother was diagnosed with Dementia. ( she passed in 2021) If you could do a video on the links between Downs and Dementia, that would be great. Thanks for all you do.🙏🏻💜
I would also appreciate any info or video on Down Syndrome and Dementia. My sister was diagnosed last year and with my parents being elderly, I have become her primary caregiver [although our father takes care of her on mornings when I work] it takes quite a toll on him and I have put a lot of my life on hold. There simply are no breaks as she has also developed seizures [on meds for that] Not complaining, am honored to care for her - just noting that with all the stress we appreciate this video on respite and there is so much on this topic that we are looking into - Even with all my research and notes and discussions with her doctors I learn a lot from these posts but would love one that focuses on Downs. Thank you for mentioning Downs and Dementia. Thanks Dr. Natalie for all your videos. I follow them and have learned and found comfort in many.
I would really love to try some kind of respite care for my partner of 18 years. Unfortunately, like some other commenters here, I fear he may be too much to handle for anyone. He's only 52, moderate dementia but advancing quickly, type 1 diabetic, and extremely easily agitated. I would be terrified to have someone in the home because he's very territorial about our house, doesn't want anyone there who he doesn't know. And he will get violent or try to bolt if he feels threatened. I just know it would be a disastrous situation, but at the same time I feel like some socialization outside of just my company would be good for him. Although because he's so young compared to most with dementia, I don't know if he would connect with the people at an adult daycare. Boy, could I use a break though. His mother gives me four hours a week if I'm lucky, and his siblings are no help at all.
My mom has an aide from Home Instead come 9 hours per week. This person does cooking, light cleaning and laundry for Mom plus provides companionship for while I run errands and go for walks. I am getting more help this weekend so I can visit my son at college. The main issue for me is being able to take a longer vacation. One time my brother came to stay in the house for a week. My other brother wont visit her.
Thank you Dr. Natalie... my husband with Alzheimer's seems to be progressing quickly in these last months. He got cellulitis of the hand, which has healed, fortunately, but it seems to have kick-started 'sun-downing'. Not exactly sure, but he is so agitated at night, difficulties getting to sleep, gets up, gets back in bed, walks around, whimpers, etc. All of this makes my sleeping very hard and I am so tired. I want to contact the VA to start the process, but can't get them on the phone. Any better times to call?
My lo can still do his adls so we don't qualify for respite. I asked for it and was given a list of socially supported housing options... Right... Cause running two different households is so much more relaxing!
My spouse has been granted IHSS hours every month. The IHSS worker is my stepmother, a former nurse, and she and my dad live across the street. The problem is that she she can not or does not get my spouse up out of bed, cleaned up and showered, but does feed him and give him drinks. It’s just not working out like it needs too. I’m at a loss as to what to do next.
I have been my fathers caregiver for 8 years, he has Alzheimer’s & Dementia, I’m getting burnout .. I’d like to find out how I can do respite care through the VA. I’m tired.
it's a shame that medicare only covers respite care when your LO is in hospice (which is the time in our journey when we get the *most* resources, not necessarily when we needed them most). To be blunt, the government is pretty useless; we're on our own.
My experience has not been a good one. Those that have come do nothing but sit. They may get drinks or food but not food fit for a diabetic. It’s very hard but my son has moved in since rehab and helped get groceries, bring home food, get my husband to do things he needs to do like shower or use his devices. He is getting remarried soon and I do dread it. He does my yard and takes care of my car.
I told my hubby the doctor was requiring me to take a break 4 hours per week. That’s how I got to get someone to come in. At first I used a company. It worked out ok. Now, my sister and her boyfriend come over. I pay her $80 for 4 hours. I think I made a mistake…. I should have stayed with the company. I. My sister isn’t doing things I’Ve asked her to do when I am gone.
Where I live, a company will charge $45 an hour with a 2 day/4 hour a day minimum a week. What did the company do that your sister won't? Not being nosy, just seeking advice.
Where I live, a company charges $45 an hour, 4 hour minimum each day and at least 2 days a week - a total of $360 for two four days a week. What did the company do that your sister doesn't? Not being nosy, just asking for advice.
We have both in home respite and at a care home if you need longer from memory I think we can have up to 6 weeks a year we tend to knock our health care here in Australia but it’s pretty good really oh and if you need more then you have to pay but it’s pretty good
My mom is in respite care right now for five days and I feel like I have just been released from the prison of Alzheimer’s. She has the disease but we are all suffering from the effects of it. Respite care has been a HUGE blessing for me in so many ways.
Thank you Dr. Natalie. I am looking into options for me. My husband has vascular dementia and it has escalated. He requires more care from me. I am physically and mentally exhausted. I have a caregiver twice a week 4 hrs each day. I have come to the realization that I must look into more help. You have helped me tremendously and I’m grateful.
I understand what you're going through Vivian. My husband has vascular dementia too. It is a lot of work and I'm very tired emotionally and physically. Take care and I hope you receive the help you need.
@@carrie402 thanks so much. Do you have a caregiver?
My husband has recently been diagnosed with vascular dementia, if you have time could you message me???
I’m Janice newbold
Thank you!!!
@@vivianpolner3821 No, I'm it Vivian. Everything is way beyond my budget where I live.
My husband was recently diagnosed with vascular dementia an I'm trying to wrap my head around this. He's just 59. I'm scared of the future. 🙏
This is so timely, I will leave my mom in respite care tomorrow because I’m having surgery. I have also scheduled respite care to go to visit my family abroad. I would have loved to take my mom but her dementia and her walking limitations will be to much for her and myself. I do have to say that I throughly checked a 4 respite care centers. I was horrified to read the reviews on Yelp and Google. My mom’s care manager suggested the fourth and it wasn’t bad. As I toured the facility I felt comfortable to leave my mom overnight, this is also a test to see if my 10 day vacation that I so desperately need will be ok. One other thing I wished you spoke about more is “the guilt” one has when they leave their loved one to take care of themself. I’m trying to deal with it. Thank you for your videos! A former Care participant of your program.
I take care of my mom and you have to stop beating yourself up when you leave them because you need to recharge. I wish I only had the opportunity to recharge. It will be good for you to love yourself knowing your love is a battery that never fades. I will pray for you as well. It is so tough taking care of elderly parents.
I’m new to this, and SO GRATEFUL to have found Dr Natalie’s tips! I was SO OVERWHELMED after only 1 week of caring for my paranoid elderly mom. Now I have a fresh new perspective thanks to Dr N - and so much of the pressure I was putting on myself has lifted.
Unlike many, my mom suffers from delusions and hallucinations - BUT - can still (barely) do most of her ADLs. And I NOW know that I am NOT RESPONSIBLE for curing her unique beliefs and just can spend time and assist with things that she allows (like doing grocery shopping & errands and doing her laundry and helping with cleaning). She also asks me to help her in the shower - so really, I see that I have it quite easy.
My 87 yr old daddy has mixed dementia ( Alzheimer’s & vascular, due to 20+ yrs of TIA’s ( the most recent one last week) and an ischemic stroke in 2020).
Since he had the ischemic stroke his disorientation, paranoia, delusions and confusion has escalated.
My goal is to get him to the next stage where he “ won’t know what he doesn’t know.”
He’s pretty close to that point now.
He is losing not just short term memories but even most of his long term memories.
But he is acutely aware of something being wrong with his brain and he is very scared , especially at night.
But my husband and I have basically put our lives on hold for the 7 years daddy has lived on our property ( especially full time these last 4 years).
So yes we are so ready for some respite.
Daddy has long term insurance that allows me as his caregiver up to 21 days of respite.
So one day we will get a vacation 🙂 10:58
I will have a person come in once a week and that will give me some much needed time to do shopping and appointments. Our family helps, alot but they all have jobs and families, I certainly don't want to burn them out either. When I read your blogs it helps, THANK YOU!
I’m looking into this for my mom, I’m way past burnt out. I don’t have anyone to help, do you find one day a week is enough? 4 hours? It is expensive out of pocket but I need it
Thank you. My spouse is going to a week of respite for the fourth time this week. Each time has been difficult. He does not like going and usually sulks for a week in advance. I wouldn’t tell him but his ipad is linked to my phone and he can see calendar appts. I’d turn it off if I had time to figure that out. He also goes to a day away program 2 times a week for about 6 hours. No guilt here. He loves it. I can get stuff done, rest or have lunch with a friend. We have a psw who comes for 1 hour 2 times a week for personal care. As the workload gets heavier and I deal with my own health issues respite gives me opportunities to just breathe.
I took my husband to a group dementia day care facility. He refused to join in the activities and even tried to break a window to get out. We tried 2 days - after 2 hrs one day and 1-1/2 hr another day, they called me to pick him up and said they just could not handle him. He was their only failure so far. Somehow, I don't think an in-home caretaker would do what I had to do today. He pees on the bathroom floor and I have to clean that up at least 3-4 times a day. This morning, he defecated all over the bathroom and all over himself. I not only had to clean up everything .including him , but give him a shower. Showers are another of my main problems, because he is adamant he will not get into the shower. He will literally fight with me when I try to get him in (oh, yes, I've tried most of your suggestions about how to do this). He had also messed up the clean sheets I put on just last night. So, I had 3-4 additional loads of laundry today. I keep pads down on the bathroom floor, but this just went right through them and I had to throw one away because it couldn't be cleaned. In fact, the pads do not really work all that well and I have to clean the floors of 3 bathrooms 3-4 times a day. I don't believe there is any way I could force him to spend overnight in a facility to spend time there. He would fight them and he is truly powerful, especially in his arms. I'm truly stressed and get no help from anyone.
I’m sorry to hear things are so hard right now. I’m not an expert, but many counties have resources that might be helpful. You deserve some good support right now, so make sure you get it for yourself if you can. You may be faced with some emotionally tough decisions, but you shouldn’t have to deal with this alone. There are people out there - probably locally - who can give you support and access to resources. Please take care of yourself. It is NOT selfish to do so.
^^^^^ What Kevin said.
I have been there, my husband had urinary incontinence and became constipated and had rectal incontinence. He did not know he had to urinate and it went on for two hours. All over the couch,the carpet, the kitchen floor. It was horrible but my son who was an EMT was staying with us and helped me. Call your fire station for help. When we got covid they came 8 times. He would fall and couldn’t get up. After that he ended up in the hospital with kidney failure, then rehab and I got 10 days of rest and home health care. That’s when my son came to stay. I could write a book about 2022. 4 hospital stays, rehab, kidney failure, incontinence and yes no rest. Just slow down, your doing your best.
This breaks my heart, I will pray for you. 🙏🏻
I’m thinking of you 💙
such a great video !! ... we went thru this with my mom , 'respite' was so misunderstood ...
Thank you for advise Dr 🙏🏼😘
Yes I've missed so many appointments at Veteran hospital due to my mother cancer and dementia
I am trying to get respite now for my sister withDown syndrome and cognitive decline for the last 1 1/2. I haven’t had help since I started taken care of my sister in April of 2018, and it’s not easy getting it. Thank you for your videos.I follow you and have learned a lot, but I did not know about the aging Downs Community and Dementia, but stubbled upon it when our Mother was diagnosed with Dementia. ( she passed in 2021) If you could do a video on the links between Downs and Dementia, that would be great. Thanks for all you do.🙏🏻💜
I would also appreciate any info or video on Down Syndrome and Dementia. My sister was diagnosed last year and with my parents being elderly, I have become her primary caregiver [although our father takes care of her on mornings when I work] it takes quite a toll on him and I have put a lot of my life on hold. There simply are no breaks as she has also developed seizures [on meds for that] Not complaining, am honored to care for her - just noting that with all the stress we appreciate this video on respite and there is so much on this topic that we are looking into - Even with all my research and notes and discussions with her doctors I learn a lot from these posts but would love one that focuses on Downs. Thank you for mentioning Downs and Dementia. Thanks Dr. Natalie for all your videos. I follow them and have learned and found comfort in many.
I would really love to try some kind of respite care for my partner of 18 years. Unfortunately, like some other commenters here, I fear he may be too much to handle for anyone. He's only 52, moderate dementia but advancing quickly, type 1 diabetic, and extremely easily agitated. I would be terrified to have someone in the home because he's very territorial about our house, doesn't want anyone there who he doesn't know. And he will get violent or try to bolt if he feels threatened. I just know it would be a disastrous situation, but at the same time I feel like some socialization outside of just my company would be good for him. Although because he's so young compared to most with dementia, I don't know if he would connect with the people at an adult daycare. Boy, could I use a break though. His mother gives me four hours a week if I'm lucky, and his siblings are no help at all.
My mom has an aide from Home Instead come 9 hours per week. This person does cooking, light cleaning and laundry for Mom plus provides companionship for while I run errands and go for walks. I am getting more help this weekend so I can visit my son at college.
The main issue for me is being able to take a longer vacation. One time my brother came to stay in the house for a week. My other brother wont visit her.
Washing clothes was an excellent comparison. I'm at that breaking point with little support but worry how LO will react to a stranger coming in
I'm a nurse looking to start a respite care service.
Thank you Dr. Natalie... my husband with Alzheimer's seems to be progressing quickly in these last months. He got cellulitis of the hand, which has healed, fortunately, but it seems to have kick-started 'sun-downing'. Not exactly sure, but he is so agitated at night, difficulties getting to sleep, gets up, gets back in bed, walks around, whimpers, etc. All of this makes my sleeping very hard and I am so tired. I want to contact the VA to start the process, but can't get them on the phone. Any better times to call?
My lo can still do his adls so we don't qualify for respite. I asked for it and was given a list of socially supported housing options... Right... Cause running two different households is so much more relaxing!
My spouse has been granted IHSS hours every month. The IHSS worker is my stepmother, a former nurse, and she and my dad live across the street. The problem is that she she can not or does not get my spouse up out of bed, cleaned up and showered, but does feed him and give him drinks. It’s just not working out like it needs too. I’m at a loss as to what to do next.
Great information
I have been my fathers caregiver for 8 years, he has Alzheimer’s & Dementia, I’m getting burnout .. I’d like to find out how I can do respite care through the VA. I’m tired.
it's a shame that medicare only covers respite care when your LO is in hospice (which is the time in our journey when we get the *most* resources, not necessarily when we needed them most). To be blunt, the government is pretty useless; we're on our own.
My experience has not been a good one. Those that have come do nothing but sit. They may get drinks or food but not food fit for a diabetic. It’s very hard but my son has moved in since rehab and helped get groceries, bring home food, get my husband to do things he needs to do like shower or use his devices. He is getting remarried soon and I do dread it. He does my yard and takes care of my car.
Wow I need your help 😢
I told my hubby the doctor was requiring me to take a break 4 hours per week. That’s how I got to get someone to come in. At first I used a company. It worked out ok. Now, my sister and her boyfriend come over. I pay her $80 for 4 hours. I think I made a mistake…. I should have stayed with the company. I. My sister isn’t doing things I’Ve asked her to do when I am gone.
Where I live, a company will charge $45 an hour with a 2 day/4 hour a day minimum a week. What did the company do that your sister won't? Not being nosy, just seeking advice.
Where I live, a company charges $45 an hour, 4 hour minimum each day and at least 2 days a week - a total of $360 for two four days a week. What did the company do that your sister doesn't? Not being nosy, just asking for advice.
IME family members just let you down. Try and get independent help whether paid or not.
We have both in home respite and at a care home if you need longer from memory I think we can have up to 6 weeks a year we tend to knock our health care here in Australia but it’s pretty good really oh and if you need more then you have to pay but it’s pretty good
You have to pay anyway ours is $57 a day which is the whole pension as he can’t go less than 2 weeks . The Government will only co pay part now
@@donnabridges5858 sorry forgot to mention we were on the NDIS but now she is in full time care as she is now in the later stages
After watching this video I'm left wondering one thing. How do I get respite care?
And how is it paid for? After five years of doing it 7 days a week, I am beyond burned out
Isn't it called resPITE and not respit?? 🤔