I had heard you guys using this word,respite, on here, but I thought it was a UK thing. I did not look it up. Long story short;

I was invited to go to Puerto Rico this fall by my sister. She has been asking me for years, but I always said no because of my husband. I told her that I would go with her this coming fall. I then started calling family to come and sitter to make sure L was taken care of. Well, the hospice team came in today and used that word, respite. They said they could respite him for a week in a local nursing home. They said the insurance will cover the bill. I said, WOW!!!! really. I am so grateful for that. 

I really feel stupid now for not knowing what the word meant. 

I have also changed my profile picture to honor my husband. He is the skier on the bottom right. This picture was taken when we first met in 1970's. 

31 Replies

  • Hi Debra,

    Seems quite a few of us are going through the respite thing, a nurse has been to see us today to do an assessment on Keith for CHC, social services seem to think I need a break, which I definitely do!

    It's worrying though but as long as we know are partners are being well looked after and getting all the care they need it's only got to be a good thing!

    Go and enjoy your break, it will do you the world of good and bring a little normality back into your life, try not to worry and relax, I'm sure the days will seem never ending as opposed to what they are like now, constantly doing and arranging things and hardly ever getting anywhere! It's 5pm most days and I haven't done half of what I intended to do!

    Take care....

    Love and hugs....Pat xx

    P.S. Love the picture!

  • YAY, I am so glad you decided to go. It will do you a world of good!

  • goldcap, 

    How is you guys visit to Florida going this week going? I look forward to hearing from you about it. I will not go on the vacation until the fall. I am just thankful to be able to get away for even a day. It has been 3 to 4 years since I was able to even go visit my sister without my husband with me. He is always by my side. I really need the R &R bad.  Good to hear from you. XOXO

  • I'm so glad you will be able to go.  You definitely deserve a break.  I am going away too - this week!  I just posted about our respite care.  I'm feeling nervous but I hope it will be a good experience for us both.

  • vlh4444, keep us posted about your trip and the respite care. Give us insights on what not to do or do for our loved ones. We would love to hear about your trip too.

  • Yes well so far my advice is - don't do what I have done and spend the week, or even the month, before getting into a mounting panic about arrangements.  I need the holiday even more having organised D's care for the week, got his clothes washed and ironed, named and packed, ordered his medication, spent hours on the 'phone trying to get on to CHC, the nursing home, the GP etc. not to mention the numerous forms, assessments and things we had to go through so that he could be accepted. It's exhausting!  I hope it will be worth it in the end though.


  • Thank you for the advice vlh4444. I will start looking into it now. I have 5 months to plan.

  • Shave a lovely break, you deserve it, well we all deserve a break a few times a year.  Yvonne xx.  

  • Lovely picture. Are you the one they are holding?  Have a great time away knowing your husband will be well looked after in the hospice.


  • NannaB, that is Lou Futch, another person that was skiing at Cypress Gardens. My husband of 38 years taught me to ski, step off my ski's, and onto his while being pulled behind the boat. I could get on his shoulders while skiing. LOL, that was 38 years ago. We has several good years before everything started going south. 

  • Wow!  I wouldn't have been able to get on my husband's shoulders on dry land and still, let alone bombing along on water. I'm very impressed.


  • NannaB, we were both in our 20's still so young and limber. LOL  I would not have ever done something like this if it were not for him. We did have a few unwanted falls, but we always had a spotter in the seat next to the driver that would alert him when we went down.

  • I'm still impressed.


  • That's great you did your research. It's nice to know Hospice can help with respite. Now, go and enjoy your trip with your sister and get some much needed rest. 

  • Respite, that's not a word many folks have heard of.  But for those who need it, like most of us in this web community, it's dream come true.   I'm still at the point where I wouldn't enjoy myself unless my wife was right by my side.   I guess I've always been that way.   When I used to travel on business and would have opportunities to do some site seeing, I always had a hard time enjoying myself, wishing my bride was with me.   Which is why I often arranged some of my trips to be able to bring her along.   I used to travel to Puerto Rico a lot on business and never was able to take her there.  Although one of our many cruises (18 to be exact), originated in San Juan.

    I remember going to Cypress Gardens years ago.   So beautiful, especially the young ladies in the belle dresses.  And the skiers were so talented.    I've never been a very good skier.  Never could ski on just one ski.   


  • ketchupman, 

    What a beautiful statement to say about being close to your wife. My husband was always like that. It was seldom we went anywhere without each other.

     I have never been on a cruise, to any island, or out of the country. This will be exciting for me to do. Because my husband was in the Navy,and I have lived in about 5 states. And, once I took our son the Washington DC when he was about 10 years old. Oh, our son was stationed in Las Vegas, and we went out there to the Grand Cannon once. He got married in the Little White Chapel there. 

    My husband worked there for 5 years. He would do doubles, some jumps, and barefoot ski. He sure caught this Texas country girl's eyes. It was his turn to take the laundry up for cleaning that day. His basket blew off and into me. We have been together ever since. 

    My dream is to go to Alaska someday. 

  • i love that picture! And I'm so glad you are going to be able to get away for a bit. Puerto Rico should be lovely!

     I am a bit envious.  No one has suggested insurance would cover respite for us, only that I can make a temporary private arrangement with a nursing home nearby for $300 a night, or arrange a night sitter for about the same. I wish I could be making that kind of money! Oh well, he wouldn't want to go, and I'm not ready to have a stranger in my house at night.

    On the (very!) bright side, two of my sisters have volunteered to come in turn lately to help us out, since my work is in its busiest season and I am feeling rather stressed.  One came from  Chicago, about a thousand miles away and stayed a wonderful helpful week, and the other, from central NY, about 450 miles away, is driving up to Maine today.  I am really lucky to have such great sisters, and I know it!

    So where was that picture taken? Did your husband water ski professionally?  We used to ski behind a very low powered motor on a wooden motor boat when I was a kid up at our camp, and we loved it. My more adventurous siblings learned tricks, but nothing like that!

    Love and peace, Ec

  • easterncedar, It might be because my husband is on hospice, and they are the ones that would respite him for me. Otherwise, I would have to save money for a sitter to come part-time. Our son said he and his family would come spend a week to watch his dad if I needed.

     I have not been any place without my husband in 5-7 years. On that time I went to visit with my sister for a week in Myrtle Beach, SC. My husband has gotten physically worse in the past year or so. He is getting to where we cannot get to far away. Our son lives 2 hours away, and his house is the only place we try and go anymore.

    Yes, my husband skied professionally for 5 years at Cypress Gardens in Florida. That is where I met him 38 years ago. The family has been telling me I need to start working on getting burial ready for him. I have been digging through boxes of pictures. His old boss, that worked at the gardens, sent me pictures through facebook. 

    I have always heard it was beautiful up there. Maybe someday I can come up and sit for you. I am a math teacher by trade, but I think that I have learned to be a sitter through all of this PSP.  It would be fun to travel someday in our lives.

     My husband was a nuclear operator for 28 years. He was stationed in Chicago for 6 months, and Saratoga Springs, NY area for 6 months. We loved it for a while, but the cold was brutal. Stay warm. xoxo

  • Hospice here hasn't been helpful at all, but I can't complain too much, the VA has been fantastic, really great.

    We went to Cypress Gardens once or twice when I was a kid. I think your husband being a skier there is really interesting!

  • And they haven't been all that helpful to me either, but I'm reluctant to use many of their services.  I already had all of the equipment needed (hospital bed, suction machine).   They basically provide what my insurance provides without having any out-of-pocket.  They also provide a few extra supplies that insurance doesn't provide (bed pads, diapers, mouth swabs, shampoo and skin care, seat for shower and toilet).   But they don't cover all of her meds and I found out they won't cover her catheters.   But what they don't cover, I can still have covered through our insurance.

  • Once he's enrolled in hospice, they will provide up to one week.  I haven't taken advantage of that, and probably won't.  They will also coordinate and send volunteers to sit with him for a few hours at a time.   Again, I probably won't do that either, as I'm a little picky as to who comes into my home.

  • Yes, well, getting enrolled is something we can't do as yet.  Except for the psp, my guy is pretty robust!

  • I put it off for a long time.  Kim's neurologist suggested we go with them 2 years ago.  She was also against the PEG.   A doctor just has to state that a person could pass within 6 months, which many PSP'ers could if they were allowed to drink/eat and roam freely.   She told me that once we had the PEG inserted, she would have a more difficult time making that referral.  But then last December when Kim was doing so poorly, she suggested it again and I gave in.    And I also put off the decision because I wasn't sure how it would work with our insurance policies.  Kim has been covered on my commercial policy as primary and then her Medicare pays any balance as secondary.  Since we have a big deductible on our primary coverage, she usually would quickly satisfy our deductible and that would then assist me with any of my claims.  And even though the primary didn't pay anything due to the deductible, her Medicare policy ended up paying it all.   So it was really a win-win.   But I found out that being on hospice doesn't really change anything.   They still bill our commercial policy (a whopping $5500 a month).   They pay some and then the rest goes to Medicare.

  • Yes, when I applied for hospice, they said that my guy's doctor had to certify he was within 6 months of dying, but indicated that this was often extended... but I don't think his doctor would be comfortable making any assertion so clearly far from the truth. 

  • Hospice does come with its downsides. Like I can't just take Kim to a doctor or even to the ER without first calling them for approval, which probably would get rejected.  And if I took her anyway, our insurance wouldn't cover either.  And you can never call for an ambulance as they never cover those bills. But the nurses who come are very compassionate.  They are used to dealing with much sicker people, usually those dying from cancer and require a lot of pain meds.  And the Chaplin has also been a comfort.  Tough decision.  Most people make it much later than they should.  I've been told that most hospice patients die within the first couple of weeks after enrollment.  But they have some that have been on hospice for a couple years.  I think we'll have at least a year with them. 

  • My husband has been on hospice for about 7 months. I took my husband to the emergency room, and our insurance paid. He has also had to take a trip to the hospital emergency in an ambulance and the insurance paid. Are you in the states? My husband fell and had to have stitches. 

    The only down side I have ran into is that they will not do any therapies. But, if we go through the VA for that they do not count.

  • Yes, we're in KY.   That's just what they told me.  But I'm sure our insurance would pay if it was something like a fall.  I work for one of the major insurance companies and am the Director of IT for our claims systems.  And I know that we don't have anything that would prevent it from paying, at least on the front end.  But we have a Financial Recovery unit that could go back and recoup payments made at a later date.   

    I think the main thing hospice wants people to realize is, once you sign up with them and you're in your final hours, they want to handle it and not have you change your mind about doing some form of life-saving measures.  They won't pay for anything (generally) that will make you better or try to cure you.  Their goal is to keep you comfortable and out of pain, and provide support to loved ones during those times.

    But they've told me multiple times that I can always drop them on a day's notice and go back to the way things were with our original insurance.   So that's always good to know.

  • Ketchupman, Wow!! the recovery unit recouping payments sounds wonderful. 

    We were having so much trouble with our BC/BS of Alabama getting the supplies we needed. When I took my spouse to the VA doctor, they suggested hospice. I have not regretted it so far. We how have a hospital bed, wheel chair (everything we need) because they got involved. My husband has had to go on a breathing machine the past couple of months which I am grateful to have hospice already on board. I do not know how long they can stay on board, but I am grateful they are there. 

    All I had ask for from BC/BS was a bedside commode. Even in his disability state the people that have assistance tell me he makes too much money. We are right at the edge of bringing in what is alloyed for 2 people, and he has a small 401k. That puts us unable to get assistance (at the edge). 

    I pray that if hospice pulls out that they will be able to come back at end of life also. 

    The hospice here said if we go through the VA for PT, ST, etc., it does not affect them. That is what we are doing so far. 

    Thank you for any advice you have.

  • I really dislike having strangers in the house, too, but have had to accept it or give up working.  Once the ice was broken, with the quite dependable aide first assigned to us, I got over most of my resistance, and now we have two regular attendants in turn.    I am a private person, and it sometimes makes my home feel less like home to me, but that's just something that comes with this territory, and it's not the worst thing.

  • You're a math teacher not a word teacher! hahaha

    You're husband was quite the athlete in in the 70's eh?

    was he in a show or just having fun? outfits look like a show....

    I hope your vacation in Puerto Rico provides a needed respite to you ...

    and who knows, maybe hubby will find a kindred chum at his place!


  • My husband was a professional water skier when we first met in 1976. He is the person to the bottom right. 

    Our trip will not be until the fall. I found out today it is not Puerto Rico that my sister is booking for us, it is the Virgin Islands. I hope he will be ok there for a week. I will have to call often.

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