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Anybody? Try almost everybody! Expert after expert tells us that we absolutely MUST have respite. We tell each other that we must get away from the situation regularly. We know that caregivers have higher death rates than our non-caregiving peers, and are subject to all kinds of stress-related health problems. And we also know that one action we can take to counteract these adverse outcomes is to have time to ourselves weekly and to take regular vacations. So, do we?
Sigh. It is very, very difficult to arrange respite regularly. But we do lots of other very, very difficult things. We need to do this. (And I say "we" because this is something I too haven't been as conscientious about as other caregiving duties.)
So we know what the problem is: not getting time away We know what the consequences are: ugly health and mental health impacts And we know what the solution is: arrange to get away regularly
But the solution can be hard and we often just don't have the energy to make it a priority. We should.
My Mother, in assisted living has panic attacks when I go out of town. Even if I'm at the beach and only two hours away. I go anyway. She makes the time before I go miserable, and I'm punished in someway when I get home. But being away sure is wonderful.
Ummmmm.... Yes. Absolutely. My work frequently calls for me to be away from home overnight. It's hard on the remaining family at home, but it works out. It's true that I "pay" for it, when I come home, because my Dad is both so angry and so relieved he can't help himself from being nasty and needy, in alternating breaths. This last trip, for the first time, I didn't want to come home to this house and family and pets I love. I've been so cranky and tense, and can't seem to stop the cascading emotions and snakiness I am spewing. Though, today it seems more internally peaceful. I think burnout comes with the territory. As much as the physical demands, I find its my own internal "weather" that costs me time and energy. I get mad about the unpredictability of how long it takes to get him ready in the morning --will it be 30 minutes or will this be a 90 minute day? Will he have spilled the urinal? Can I find where he stashed the dirty "special underwear" he didn't want me to know he soiled -- the one I can smell, but will be yelled at for hunting down? How hard will it be to keep his dog from biting my dog this morning? What else will I find? When the kids were little, there were days when you had to take them to the doctor unexpectedly, but those times were rare. It's less rare for him, so I always have to have a back-up plan for work (I am a consultant so not so easy) when clients are counting on me. I rarely see my friends these days because it feels like too much trouble to make the plans, and then all I do is whine when I am with them. I blame it on Dad being here, on Dad's temper, on Dad's stubbornness - but the real problem is my internal battles about him. It's all stuff I can change within myself, but have less and less resilience to be able to do. Somedays I feel like I want it to feel seamless to Dad, how much effort this all takes. Other days I want him to recognize how topsy turvy this has made the family. Some days I see how upended his own life is, and feel more patience with him. Then there are days I feel like I don't see how I can get through the week like this, let alone potentially years more. I want to see an outcome to root for that doesn't require rooting for him to die. And there are moments when I remember it doesn't matter WHAT I root for. Things will unfold as they will, when they will. When I can get myself to stop wrestling ME to the ground, I can walk through this with more peace and grace. SO the real thing I root for is that I find more moments of that. Sorry for the rambling...
I know how you feel.I lived in ohio 4 years an taken care my mother an aunt plus traving back an forth to pa.Now i been retired since june of 06.So i put my life on hold for almost 10 years now.My mother is 93 an my anut pass way at age of 92 3 years ago.But its the right thing to do in GODS eyes.Im burn with no help at all with 8 family members with 10 mins from her.Dont stop you will be bless from above.
Today, my husband is taking his father to the hospital and I am praying they will keep him a few days. I know this is wrong, but that's how I feel. This morning, I am sleeping past 6 am, for once in a LONG time, and my husband wakes me to do my FIL's iv, although I showed him how to do it. Wow,I think, couldn't he do this himself? Already, before the sun is barely up, I hear a list of complaints and demands......must call O2 people, for more supplies, call the med., people, call the doctor, etc., No, it's not time to take iv out, no you cannot have dairy with cipro, etc. The other day, my husband and I had a terrible arguement about all of this. I tried to explain to him that I am burned out and his reply is don't be so dramatic. So, on top of everything I have a very selfish husband who runs away any chance he gets. I miss so many things....little things, like playing my stereo loud while cleaning the house, lighting candles, having friends over for dinner. Working! I notice that I am much more sensitive and snappy lately and my husband has become very critical. But, I know how much I can and cannot take. And, I have no problem voicing that I need help. All we can do is take one day at a time and take lots of deep breaths and pray.
oh wow... you are going to get a ton of email on this.... Ya im burnt out,,, beyond toasty, im crispy. Im only 43 yrs old, but Im the parent of 2 teens and a 61 yr old Mom with a mutitude of health issues, and alzhiemers. Once Mom got on hospice 3 months ago, her health has gone downhill. I had to toss in the towel. I love her, but I also love my kids, and dont want to be a bitter mean woman because I cant do everything, and feel like I should. Weve applied for Medicaid for Mom and she is going to go live in a nursing home. No one else in the fam will help, and I cant do it anymore. My friends dont come over cause Mom will " have an attack", and if the kids have sleepovers then shel be up a the butt crack of dawn making all kinds of noise.. I dont understand, and hope Im never like her...... please try and take some time for you, and cherish that solitude, or put your foot down....
I have the same problem, completely burnt out! I'm caring for MIL for past 3 or so yrs she's 88 w vascular dementia. Her daughters only a few miles away w 1. Daughter who doesn't even work! Rarely do I get any physical help. I've had major health issues recently n it's getting more n more difficult to care for MIL. Her insureance will not cover home health svcs n with my husband the only one working difficult to hire from outside but at this point if nothing is done soon I will surely end up in the hospital b4 my MIL. Ps. His Sisters r no longer speaking to my husband only because they've made troubles about THEM n not about caring for there own mother. Ridiculous!
jimscare - We are also blessed from above if we get respite care or have our parent in a nursing home - some of us can't put our lives on hold; especially if we have children and there are adverse effects from the caretaking of the elderly person in our homes. Bless you for all you do. I've done all scenarios - care in home, my home and nursing home.
Shortmama - I understand and totally support the NH decision. My mother is in a nursing home and doing fine. Nursing homes are not the facilities of the past.
What I learned is not to let the stress kill me; respite care is a must if you can get someone to give it to you. A really good nursing home can be a needed alternative as well. God bless everyone and all the gut-wrenching decisions we have to make. I can feel the bus coming - I'll be prepared and will just step aside and not allow myself to be thrown under it.
Hi, wow this is an issue for everyone. I have been caring for my Mom for two years she had a hemorogic stroke. I am an only child so cannot ask for help from anyone. I retired early because it was too much, but I am 62 and am getting so tired of not being able to come and go as I would like, it is time to look at assisted living or getting a companion to come in so my dh and I can go on vacation. I miss just meeting my kids and having a conversation without her.....the guilt I feel will kill me.
Hi, wow this is an issue for everyone. I have been caring for my Mom for two years she had a hemorogic stroke. I am an only child so cannot ask for help from anyone. I retired early because it was too much, but I am 62 and am getting so tired of not being able to come and go as I would like, it is time to look at assisted living or getting a companion to come in so my dh and I can go on vacation. I miss just meeting my kids and having a conversation without her.....the guilt I feel will kill me.
KeepontrtyintM: I know exactly what you mean. If I dare to take an hour or two away from her, let's say to go shopping, she will bait me upon my return: "So what did you buy this time that you don't need? You must have fifty dresses in your closet". Any time away from her is sabotaged so that you are meant to come home to some kind of crisis she has created in your absence. It's never anything life-threatening, just enough to get you to pack your bags for a guilt trip. The less you tell them in advance, the better for you. On my daughter's wedding day - her WEDDING DAY!! - she (daughter) had arranged for us to have our hair and nails done together, to spend some mom-daughter time before the big event. I can't tell you how honoured I felt just to be one-on-one with her on the big day. Well sure enough, an hour and a half in, doesn't my husband come roaring in, having driven over from the house, where my mother was up in her room, watching tv after lunch as usual: he yells "You have to come home right away! Your mother is very sick! There's something wrong with her - you better come quick!" So of course, I had to race home, only to find her sitting there like nothing, watching a show.....I said to her , so what's the big emergency? She says, I don't know what you're talking about.....I never said anything. Yeah, right. My husband told me she said she felt strange and sick. Because she has heart trouble, she holds this over us like the sword of Damocles. (has had 4 heart attacks). This is her weapon against us. So consequently I was effectively "dealt with" by her and her evil manipulations and cheated out of the most special time on a special day. I then had two hours to kill doing nothing, or so I thought, but of course, she found things for me to do. So I do appreciate what you are saying. Isn't it sad that we are compelled to feel this way about our own mothers? It would be different if they had treated us differently in our childhood, for example, like they cared about us at all, and hadn't treated us as "liabilities". This is why I find it extremely difficult to care for someone and be kind to them when they have never, ever done the same for me. So my advice to you would be to get someone to fill in for you as much as possible go where you want, do and say what you want, and damn the torpedoes! You have just as much right to a life as she does, and she does NOT own you!!
I don't think I could do this if I didn't make time for myself. Mom is 99 1/2, gets around sometimes with a walker, sometimes not. Thankfully she is not incontinant. I have an agency that comes in 2 mornings and one aftenoon a week...total of 11 hours. It's not cheap but the alternative is to go bonkers. I did get a state grant that helps pay for resite and was able to place her in a nearby rest home for a week for a much needed vacation.I'm alone here even though like so many others there is other family within 10 minutes. I have friends in for lunch or dinner regularly which helps as well...an adult conversation works wonders. Also, I really think my prayers for patience were answered!
dGrey63: Your comments were right on. When my mother goes to the hospital I pray that they will keep her in too......but that always backfires. As soon as she is given a bed, then she HAS to have a TV, then she HAS to have a phone, when do I get "MY" meals, etc. Then the list-making begins. "I'll need my lipstick, the one on my dresser, not the one in that red plastic cosmetic bag.....bring my housecoat too - the burgundy one, not the flannel one .....you better bring my laxatives because they'll charge me for a bandaid in here.....don't forget to bring my mail and water my plants in my room, too ......since I'll be in here, you'll have more free time, so you can vacuum my room while I'm in .......see if you can get me some of those cheese tea biscuits that I like......ask one of the girls (my daughters) to pick up some note cards for me, I don't know how long I'll be in here so I'll have to let everyone know....I'll need lots of kleenex so bring a few boxes........." it goes on, on and on without end and no matter what list you are given, or what you do bring, you'll get "oh, you've forgotten (blank) -- I thought I told you (notice that it isn't ASKED you?) to bring that! You'll have to go back and get it and you can bring it tonight". There is no peace for you whether they are in or not. Whenever they go out to do whatever errand, you are still at their disposal: "Oh I thought you'd have my laundry done by the time I got back"; "I'm sure you've had your lunch so you can make me mine now........." HELL
Its only April and I am already sick to my stomach about getting away for one week with my family in late August! If I am with mom all the time I am smothering and trying to control her. If I am away, I am neglectful. Can't win.. Oh yeah, and the guilt is always there...reading to stomp all over me.
My heart goes out to everyone here - it seems we can never do enough no matter where they are living; even at the nursing home. My stomach still turns every time the phone rings; as my mother is queen of drama and faking things to get my attention; no matter where she has ever lived. At her house, my house or the nursing home. One of my children was away at college and needed to come home due to some problems she was having. But, home wasn't home anymore; and it broke my heart. Long story short, my mother needs to be in the nursing home; gets great care and lots of socialization. She has had her life and won't let her ruin mine and my family by living with me. I choose my children; their lives are only beginning and they need me.
Both my MIL, who I took care of in my home until she passed; and my mother have been queens that were waited on hand and foot by their husbands. I felt guilty having my MIL here while my children's lives were turned upside down.
Yes, there are choices; and if a quality nursing home is available - there is nothing wrong with it. A therapist once told me "No one can make you feel guilty". Took me a long time to understand that; but I get it. I'm done with guilt and I am focusing on my children and their needs as they need me more. No one can take my place as far as their needs are concerned. But, there are plenty of people to take my place as far as my mother is concerned.
Blessings to all; I feel your pain and realize a nursing home is not always an option for everyone. But, it was for me. And through blood, sweat and tears she is in one of the nicest around. Also, talked with a priest and he was so supportive; even said he would help us as he was on the board of a local nursing home; so even God was on my side. Take care
We aren't at the point where we need respite care, but getting away for an evening or a day is something my husband and I are trying to do every week or two. I really like what Jane B said. The wrestling is much more with myself than my mother. She is touchy, so am I. She wants to be the center of our lives because she loves us. But we have a lot we have to do, including working jobs that often require much more than 40 hours a week. Most importantly, we have a 15 year old daughter who HAS to be the center of our lives. I'm focusing on being compassionate, being forgiving of her and myself, and trying to be look for what's right in our lives. I love her, but must remember that I have to be okay to take care of her.
i have learned so much from this site, and I have only had my parents here for 2 months! Today I took a few hours to have a nice lunch with my husband, and run some errands alone! He is doing his best.. but we had just moved our daughter out to her own life, and he was looking forward to us having some "couple time". He can be sort of "passive agressive" about getting things done.. this was a great break for both of us, and everyone's mood is better. Please try to get any small break you can.. it helps so much. Today I feel like it was a good day.. and so many days I am so stressed!
WOW! There are so many things in each of these posts that sound SO familiar. My hubby and I have been giving 24/7 care for his mother....wait did I say 'we'. Lately he has been doing jobs for 1st friends that were building a house, did most of the daily work for free. Now my sister has put in an in ground pool and wanted to add a pool house so hubby has been working at her house which is 40 mins away and instead of coming home everyday and wasting gas driving back and forth he stays... this has been going on for nearly 3 months. I love my family but I'm am BEYOND being burnt out taking care of MIL 24/7 by Myself. He has been getting some compensation but not enough to make up for leaving me here with his mother. He was coming home for a night or two out of 7 and his mother would aggravate him to no end and he couldn't wait to get out of here for another 3 or 4 days and nights. Like many here I almost pray for hospital time just to get a break. For over a year we were awakened all hours of the night when my MIL would have panic attacks because she said she was smothering but could Scream at the top of her lungs to get us to come help her. She uses a nebulizer and knows how to use it and how to fill it, everything she needs is within reach of her bed without getting up, but she would rather yell us awake at 3 am to do it for her. I'm sorry but if you can scream and I do mean loudly then you aren't smothering. She is mean and says some of the most hateful things that just floor me. With all that we do for her she still complains, says "I wouldn't treat a dog the way ya'll treat me". It really makes me angry but mostly it hurts my feelings knowing all that we do for her. My sister that raised me died of lung cancer and I wasn't able to do for her like I wanted to, and I guess I feel a bit guilty that I am caring for my MIL like I would have liked to care for my sister. At the time she was fighting cancer my husband was also in and out of the hospital, on my 50th birthday I was going from one hospital with my hubby and to the other hospital with my sister. I guess my burn out has been coming on for the last 5 yrs. I've been caring for everyone but myself for the last 5 years. My sister, my husband, my husbands aunt and mother in law at the same time. Thank God my husband is better and we have his health issues under control. My sister and his aunt have both passed and now it's just my MIL but she is more work and stress than all of the others. Thank you all for letting me vent, I have gotten off the subject some but I couldn't help it.
That last part sounds really bad. I miss my sister terribly and my hubby's aunt too she was a handful but she was appreciative of all that we did for her. I would give anything to have both of them here even if I had to care for them too.
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Sigh. It is very, very difficult to arrange respite regularly. But we do lots of other very, very difficult things. We need to do this. (And I say "we" because this is something I too haven't been as conscientious about as other caregiving duties.)
So we know what the problem is: not getting time away
We know what the consequences are: ugly health and mental health impacts
And we know what the solution is: arrange to get away regularly
But the solution can be hard and we often just don't have the energy to make it a priority. We should.
I'd like to hear what others have to say.
My work frequently calls for me to be away from home overnight. It's hard on the remaining family at home, but it works out. It's true that I "pay" for it, when I come home, because my Dad is both so angry and so relieved he can't help himself from being nasty and needy, in alternating breaths. This last trip, for the first time, I didn't want to come home to this house and family and pets I love. I've been so cranky and tense, and can't seem to stop the cascading emotions and snakiness I am spewing. Though, today it seems more internally peaceful.
I think burnout comes with the territory. As much as the physical demands, I find its my own internal "weather" that costs me time and energy. I get mad about the unpredictability of how long it takes to get him ready in the morning --will it be 30 minutes or will this be a 90 minute day? Will he have spilled the urinal? Can I find where he stashed the dirty "special underwear" he didn't want me to know he soiled -- the one I can smell, but will be yelled at for hunting down? How hard will it be to keep his dog from biting my dog this morning? What else will I find? When the kids were little, there were days when you had to take them to the doctor unexpectedly, but those times were rare. It's less rare for him, so I always have to have a back-up plan for work (I am a consultant so not so easy) when clients are counting on me. I rarely see my friends these days because it feels like too much trouble to make the plans, and then all I do is whine when I am with them. I blame it on Dad being here, on Dad's temper, on Dad's stubbornness - but the real problem is my internal battles about him. It's all stuff I can change within myself, but have less and less resilience to be able to do.
Somedays I feel like I want it to feel seamless to Dad, how much effort this all takes. Other days I want him to recognize how topsy turvy this has made the family. Some days I see how upended his own life is, and feel more patience with him. Then there are days I feel like I don't see how I can get through the week like this, let alone potentially years more. I want to see an outcome to root for that doesn't require rooting for him to die. And there are moments when I remember it doesn't matter WHAT I root for. Things will unfold as they will, when they will.
When I can get myself to stop wrestling ME to the ground, I can walk through this with more peace and grace. SO the real thing I root for is that I find more moments of that. Sorry for the rambling...
This morning, I am sleeping past 6 am, for once in a LONG time, and my husband wakes me to do my FIL's iv, although I showed him how to do it. Wow,I think, couldn't he do this himself? Already, before the sun is barely up, I hear a list of complaints and demands......must call O2 people, for more supplies, call the med., people, call the doctor, etc., No, it's not time to take iv out, no you cannot have dairy with cipro, etc.
The other day, my husband and I had a terrible arguement about all of this. I tried to explain to him that I am burned out and his reply is don't be so dramatic.
So, on top of everything I have a very selfish husband who runs away any chance he gets.
I miss so many things....little things, like playing my stereo loud while cleaning the house, lighting candles, having friends over for dinner. Working!
I notice that I am much more sensitive and snappy lately and my husband has become very critical.
But, I know how much I can and cannot take. And, I have no problem voicing that I need help.
All we can do is take one day at a time and take lots of deep breaths and pray.
Shortmama - I understand and totally support the NH decision. My mother is in a nursing home and doing fine. Nursing homes are not the facilities of the past.
What I learned is not to let the stress kill me; respite care is a must if you can get someone to give it to you. A really good nursing home can be a needed alternative as well. God bless everyone and all the gut-wrenching decisions we have to make. I can feel the bus coming - I'll be prepared and will just step aside and not allow myself to be thrown under it.
The less you tell them in advance, the better for you. On my daughter's wedding day - her WEDDING DAY!! - she (daughter) had arranged for us to have our hair and nails done together, to spend some mom-daughter time before the big event. I can't tell you how honoured I felt just to be one-on-one with her on the big day.
Well sure enough, an hour and a half in, doesn't my husband come roaring in, having driven over from the house, where my mother was up in her room, watching tv after lunch as usual: he yells "You have to come home right away! Your mother is very sick! There's something wrong with her - you better come quick!" So of course, I had to race home, only to find her sitting there like nothing, watching a show.....I said to her , so what's the big emergency? She says, I don't know what you're talking about.....I never said anything. Yeah, right.
My husband told me she said she felt strange and sick. Because she has heart trouble, she holds this over us like the sword of Damocles. (has had 4 heart attacks). This is her weapon against us.
So consequently I was effectively "dealt with" by her and her evil manipulations and cheated out of the most special time on a special day. I then had two hours to kill doing nothing, or so I thought, but of course, she found things for me to do.
So I do appreciate what you are saying. Isn't it sad that we are compelled to feel this way about our own mothers? It would be different if they had treated us differently in our childhood, for example, like they cared about us at all, and hadn't treated us as "liabilities". This is why I find it extremely difficult to care for someone and be kind to them when they have never, ever done the same for me.
So my advice to you would be to get someone to fill in for you as much as possible go where you want, do and say what you want, and damn the torpedoes! You have just as much right to a life as she does, and she does NOT own you!!
"I'll need my lipstick, the one on my dresser, not the one in that red plastic cosmetic bag.....bring my housecoat too - the burgundy one, not the flannel one .....you better bring my laxatives because they'll charge me for a bandaid in here.....don't forget to bring my mail and water my plants in my room, too ......since I'll be in here, you'll have more free time, so you can vacuum my room while I'm in .......see if you can get me some of those cheese tea biscuits that I like......ask one of the girls (my daughters) to pick up some note cards for me, I don't know how long I'll be in here so I'll have to let everyone know....I'll need lots of kleenex so bring a few boxes........." it goes on, on and on without end and no matter what list you are given, or what you do bring, you'll get "oh, you've forgotten (blank) -- I thought I told you (notice that it isn't ASKED you?) to bring that! You'll have to go back and get it and you can bring it tonight".
There is no peace for you whether they are in or not.
Whenever they go out to do whatever errand, you are still at their disposal: "Oh I thought you'd have my laundry done by the time I got back"; "I'm sure you've had your lunch so you can make me mine now........." HELL
Both my MIL, who I took care of in my home until she passed; and my mother have been queens that were waited on hand and foot by their husbands. I felt guilty having my MIL here while my children's lives were turned upside down.
Yes, there are choices; and if a quality nursing home is available - there is nothing wrong with it. A therapist once told me "No one can make you feel guilty". Took me a long time to understand that; but I get it. I'm done with guilt and I am focusing on my children and their needs as they need me more. No one can take my place as far as their needs are concerned. But, there are plenty of people to take my place as far as my mother is concerned.
Blessings to all; I feel your pain and realize a nursing home is not always an option for everyone. But, it was for me. And through blood, sweat and tears she is in one of the nicest around. Also, talked with a priest and he was so supportive; even said he would help us as he was on the board of a local nursing home; so even God was on my side. Take care
Like many here I almost pray for hospital time just to get a break.
For over a year we were awakened all hours of the night when my MIL would have panic attacks because she said she was smothering but could Scream at the top of her lungs to get us to come help her. She uses a nebulizer and knows how to use it and how to fill it, everything she needs is within reach of her bed without getting up, but she would rather yell us awake at 3 am to do it for her. I'm sorry but if you can scream and I do mean loudly then you aren't smothering.
She is mean and says some of the most hateful things that just floor me. With all that we do for her she still complains, says "I wouldn't treat a dog the way ya'll treat me". It really makes me angry but mostly it hurts my feelings knowing all that we do for her. My sister that raised me died of lung cancer and I wasn't able to do for her like I wanted to, and I guess I feel a bit guilty that I am caring for my MIL like I would have liked to care for my sister.
At the time she was fighting cancer my husband was also in and out of the hospital, on my 50th birthday I was going from one hospital with my hubby and to the other hospital with my sister. I guess my burn out has been coming on for the last 5 yrs. I've been caring for everyone but myself for the last 5 years.
My sister, my husband, my husbands aunt and mother in law at the same time. Thank God my husband is better and we have his health issues under control. My sister and his aunt have both passed and now it's just my MIL but she is more work and stress than all of the others.
Thank you all for letting me vent, I have gotten off the subject some but I couldn't help it.