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Respite What?



Recently, as I assisted my stroke survivor with taking his nightly medications, helping him maneuver into bed, and removing his shoes I mentally ran down the check list of all necessary things he requested on his bed side table.  Simultaneously, I sighed.  I consciously was aware of the throbbing pain in between my shoulder blades and lower back causing me to move a bit slower than normal.  I felt tired, weepy, and angry all in one.  Certainly, I did not mention my frustration to my stroke survivor but somehow I know he knew.


It has been over two years since I became a caregiver for my stroke survivor.  In that time I adjusted just about everything in my life to focus solely on taking care of him.  At first, I didn’t think twice about it.  I would approach each day with an above board way of thinking.  There was a lot to do and not enough time to do it.  The hope that engulfed me allowed for enthusiasm to help him in his daily therapies. Others called me a saint for all I did for my husband and commented with statements claiming, “They didn’t know how I did it.”  Honestly, I don’t know how I did it either.  But, I pulled strength from a trust in a higher power and each night I could rest knowing things would be O.K.  The biggest driving force was the hope, or more like the expectation, that my stroke survivor would have a complete recovery.

So, on this night when I routinely assisted my husband I quietly excused myself from the room once he lay slumbering and I wiped tears from my eyes.  Mostly, this came about because of our latest doctor’s visit that encompassed yet another statement regarding my stroke survivor’s unfortunate circumstances that come by way of genetics.  My stroke survivor is genetically blessed with high blood pressure, which gifts him with the pleasure of taking a plethora of pills. He has grown tired of the routine morning and night of tossing back a mouth full of medication followed with a chaser of milk. He grumbles when I take his blood pressure. Whining is prevalent with each doctor’s appointment. I have become at a loss for words.  I have become weary. Thus it has been suggested that I need a break.


All this brings to mind a moment I had at the beginning of all this care giving education.  Once my stroke survivor completed his initial six weeks of In-patient Rehabilitation we brought him home and began Outpatient Rehabilitation three times a week.  The beauty of this time was it allowed me some time to do errands without concern for my stroke survivor. Meaning, I had free time from my husband but not time for myself. Things moved quickly and I was juggling so much I knew I was going to drop a ball or two.  One of the physical therapist noted I looked tired asked if I had taken some time for myself.  She, in what seemed like slow motion, stated “Respite Care.” I just smiled and said I was looking in to it and appreciated her concern.  Secretly, I was thinking, “Respite, What?” “What the H-E-double toothpicks was respite care?”  Between you and me, my dear readers, I had not ever heard the word respite until that day.  I don’t know why I had not heard the term before because I had worked in the health care field and seemed rehearsed on such things. Trust me, I went home that evening and Googled the meaning of respite, which is A short period of rest or relief from something difficult or unpleasant. Of course, I also searched for providers in the area.  I actually called an organization that did the research for me.  In the days that followed I received calls from various places wanting to talk with me about home care giving assistance.  I met with a few.  I signed up with a group just in case.  There was no obligation so why not.  Yet, it would cost approximately twenty dollars an hour with a four-hour minimum.  Somehow, I found this more stressful than what I had anticipated.  I wasn’t sure whether I could trust a hired caregiver.  I asked friends, co-workers, and family about people, groups, and assistance. Needless to say I did not hire the so-called “Respite” person.  Bringing me back to the juggling again.


This brings me to my final thoughts regarding this subject.  Now, I can say I have got to a point, after two years, where everything seems overwhelming.  Perhaps it is because I am so tired of the day to day routine. Likely it is because I miss activity that went bye-bye when a stroke appeared. More so, it is simply as defined I need a period of rest or relief from something difficult…

Lastly, what have you done my followers to find respite?


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yes Respite care is a wonderful thing for many families. I often saw , when I was working with hospice clients, many families high tail it out of the house when I got there for the insurance allotted a specific amount of time that nurses and aides had to be there even when it wouldn't take that long for the task we had to do. The families were so grateful to have that time to do what they wanted to do. Some insurances don't cover respite aides  when they aren't on hospice. That being said, there are organizations out there that do offer respite for a much lesser rate.  Word of mouth, locally, can also help you find someone to come sit and be with him while you can take a deep breath.  

I understand that he isn't happy being the way he is however you don't want to have a stroke or breakdown yourself. You must take care of you :)  

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hi strokewife:


I don't know how my caregiver handled my stroke is beyond me though no two strokes are similar & so are stroke caregivers experiences.   stroke does put every one outside of their comfort zone to  handle their new reality & make you feel insecure & overburdened by things to deal with. my husband aka caregiver used to tell me following things which made me feel so much better. keep your head above water when you are feeling like you going to drown tide will change. I know one thing for sure nothing lasts forever good times or bad times things do change. don't worry about things you can not control.




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A friend of mine used to put herself into respite care, I think she used it as a way to explore nursing home life before she actually had no choice. When at home she had care workers coming in morning and night to get her out of and into bed and cook her evening meal, and assist with showering and dressing.  Her adult son lived in the house with her but they chose not to have him do the actual care tasks. As she didn't want her disability to completely take over his life.


Can you get a regular care worker to come in and do the larger/harder jobs so that you don't feel so overwhelmed? Or will having him do a nursing home "holiday" so you can get a break help?


If you get someone to come in and sit with him for a few hours each week you can find something to do for yourself in that time such as joining a book group or art class or one of those other lost activities you miss.


Burn out is real and you need to take action.


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Honey - wish I could advise on how to get respite----- But take it if you can get it..!!!!  What you are doing is exhausting , heart wrenching hard work mentally and physically. Check with social services or your local hospital find out if there is home health care offered. A social worker should be able to advise you as to how to apply for funds. Take care of you Nancyl

also check with organizations like easter seals - they may at the very least give you a starting point.

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Respite care.  That is what all caregivers want.  Unfortunately it is expensive .  Sometimes churches will volunteer to sit with your husband for a couple of hours.  My church did this for awhile.  But after a year they stopped coming.  An hour or two is not a long time.  Fortunately for me.  I have stopped working and am a full time caregiver.  I go to the gym for 3 hours for my respite.  I swim and do Yoga.  I go very early in the morning while William is still sleeping.  Then I go to the park for an hour to have an outing for the dogs.  I get 4 hours a day of respite.  I need the time to myself and I use this time to exercise.  I need to stay in shape in order to take care of William.  I also go to a weekly bible study in the evening.  I leave him in bed and tell him I need this time.  I can sneak out to lunch with friends once a month.  I get to visit with neighbors to get social time.  I just have to use my time wisely.  William is 10 years post stroke.  I no longer have all of the PT and OT stuff.  I do hope that you find some respite.  It may have to be hours at a time.  But. I benefit from that.






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Your husband may qualify for yearly PT-OT, if you are on Medicare or through his insurance. I take Bruce to Outpatient every year for what I call his "tune up." The first few years, I sat in on every session. Now I sit and read, use their pool or just walk the grounds.


I had caregivers in to help - we private paid as we did not qualify for paid assistance, but Bruce did better with me and I had gotten to the point where I could not work and take care of him, so I retired and therefore had to stop paid caregivers. I will treat myself from time to time with a dinner with friends or a movie. I ask friends to stay with him and every once in a while, I will pay for someone to stay with him. 


What I do want to share with you is that the routine that you and your husband are in now will not continue. Changes will occur and readjustment is needed. This is difficult for us caregivers. We have to totally rethink what we are doing and what is required to function daily. Fitting in time for ourselves changes as their needs change. 


I did look into "Respite" care for Bruce. I am trying to get away for an overnight with my sister. But the SNFs that will do Respite care, at least here, require a 4 day stay. Yes, Medicare will pay for it. As much as I would love 3 or 4 days off, I can't do that to Bruce and I would just dwell on that and not enjoy my time. But it may work for you and you have to check into your insurance and see what they allow.


Also, if your husband now requires more help from you, his PCP can order PT-OT at home, due to "change in condition."


For me, the biggest thing was getting enough sleep. In the early days, HostSue advised when Bruce slept, I had to sleep - regardless of what else had to get done and over the years, I have kept to it. Bruce no longer naps, but I make sure I get a good 6 hours overnight and then I can function.


This is such a difficult time for you and your husband. A transition, for sure and so difficult to work through it. Go easy. Debbie



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EDIT TO ADD THIS FIRST PARAGRAPH:   First, let me say that when my husband stroked Feb 2012, all 'me' activities ended.    I spent the next few years, looking for that elusive moment to wash my face, often not finding it.    I took a 5 minute shower once a week, whether I needed it or not.    Then in Dec 2015, I noticed something..... he was doing better... I don't mean his handicaps had gone away, just that we had our routine and he wasn't in so much need and I actually had time to consider doing something of the 'me' kinda thing.    That month (Dec 2015, my crafting exploded with countless crocheted doilies, I was entralled with them, and felt like me again!  


I was never a person who was 'out there doing things'.   I've been a home body all my life, taking joy and yes EXCITEMENT in hand crafts that make me think and solve the puzzle of how in the world can I get this stitch over there from here (referring to tatting here).     Tatting is mostly what I do now, because it takes so much concentration to do it, and try to understand it, that I become totally submerged in it for the time I'm doing it, and everything else fades away.   When I'm tatting (or whatever I find to play with) I'm in my own world of colors and design and ... well... I guess people who are used to going out everyday (before this happened to them) can not begin to imagine why I enjoy this so much.   But I do... I can't wait till he's in bed and I have a couple of hours to work on it.    My 'work your fingers to the bone' part is getting plenty of exercise, but with my crafts, my creative side that craves something pretty and something fun, gets its chance to come out and play.     


Maybe you like to do something crafty, but haven't done it for awhile?   Crafts are therapy, it just needs to be something you enjoy, and don't make a job of (like you know, people start asking for you to make this and that, and before you know it, it's like work)


I'm also considering that next year, I'm calling a yard company, I only have so much energy and Feb will be 6 years.   I need to conserve energy because I'm getting older and stiffer too!

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