Well, dear family, when it rains, it pours. Because my husband has been sliding more and more, and even his PCP indicated to me last month that he didn't think he would be here a year from now without actually saying so, I decided to call Hospice yesterday and ask them to come out and evaluate him. They came after work today. After observing him and asking questions for about 30 minutes, they called their physician, who said that he qualified for Hospice. The next half hour was spent signing forms, then another hour with the nurse asking more questions and taking his vitals.
After all was said and done, the nurse is having a walker, a wheelchair, an oxygen tank and a bathtub chair delivered tomorrow. I can leave my husband in their hospital for up to five days at a time for respite care. And it can be as often as I need it. And when I'm ready, they will bring me a hospital bed.
I have very mixed emotions. One, vindication that I was right to call them when I did and not wait too long; two, that I received verification of my "diagnosis" of his condition; three, dispair that I really am losing my toddler in a 6 foot body; and the ultimate sadness of knowing that soon I'll have to say my final goodbye to him. He's never been a fighter, never had rages or anger. He's been very docile and loving. He still likes his toys. But, he can barely stand without support; can't get out of the bathtub without assistance; is oblivious to most everything around him.
What really gets me is that the picture of the family that my son took on his camera last week with a timer, my husband looks fine!!!!!!!! You can't see that he is leaning on me and has no idea why we are standing there.
I am numb. I don't know how much more I'm expected to take. <sigh>
I know it's not easy stepping from one tragedy into another. But who knows how long he will hang on...it "could" be several years. No one but God knows the number of our days on this earthly stage of our lives. Just think of this as being extra help for you and not as the beginning of the end.
They will be able to bathe him and take care of his needs and spare you these exhausting tasks. And respite care? I didn't realize they had their own hospitals! That's a good thing, sweetheart. That's GOOD for you and allows you to be with your children on holidays and special occasions when you could not have been otherwise. Let's copy Joan and make a pros and cons list for all of this and you'll see you did the right thing, for both of you. Love you, Mary! nbc
Hospice here in Vancouver has a real nice place, private rooms, and the hallways have a peace about them. But, it does cost - here anyway. So make sure you are aware of that (you may already be) before making plans for it. Otherwise, all the services and support they offer are invaluable.
Mary, when I read that he can barely stand without support & can't get out of the bathtub without assistance, well, I think it really was time for you to call in for help. I hope this make your life a bit easier, you've been through so much. The respite care sounds very good. Hope you are able to use that soon.
Mary, sorry to hear that your husband is so weak, but the help that your are getting now sounds wonderful. Very sad, but make the most of the help you are offered.
Mary Another step in the journey. Please take full advantage of hospice. They can be wonderful without being intrusive. My mom used their services and it allowed all of us to relax a little bit. I do understand your mixed emotions. It's an open admission that your DH is declining. It was wise of you to call for an evaluation now. One of the goals of hospice is to give quality and dignity to your lives. Couldn't we all use a little quality and dignity? As difficult as it must have been to take this step, I'm sure you did the right thing for your family. Take care. cs
Mary, its bittersweet you qualified him for hospice care, like you say it validates all the wrong reasons to have to call and simultaneously enriches your ability to get those much needed 5days respite when you can and the additional home care you need now. i think i am not far behind you now with asking for hospice evaluation. DH is also declining on a faster clip these days. but he rebounds then i am not so anxious again. you have been under extreme duress with the last few weeks, i hope we can count on this new service as a help to you and DH now. you did the right thing in getting them onboard. hugs friend, divvi
Mary, I am glad you have hospice on board....you can use the help for sure. Don't be so quick to count your husband out...my husband went under hospice care in September of 2003 and was finally dropped by them in January of 2005. He continued to live over three years after that.....sometimes we just don't know. Know that we are all thinking of you and sending hugs and love in your direction....
((Hugs, Mary)) But without your daughter there to help, you really need the Hospice support. I know I would. We may not be so far away; I'm thinking of reevaluating when we get back from Maine (we leave tomorrow. I am aware that this be a very wrong step but I have to try it.) And I'm glad you brought the hospice thing to the fore again; if we could get it, it might keep us from having to place him.
((Mary)) So good to see you posting ((hug)) though I am sorry to learn your DH has declined. I am living it, yet I cant begin to understand how deeply this must effect you. You have lost so much already..... my heart aches for you.
It takes a lot of courage to call hospice. Even more to ask them to evaluate. You are an amazing person! I made the call, but I did not yet find the strength to ask for an evaluation. I am suppose to find out today if Lynn's doctor believe he can rebound. Because he is in a nursing home, the doctors need to "order" hospice. So far they haven't even mentioned it, so I am holding my breath and keeping my fingers crossed.
I am relieved to hear you will be getting help dear Mary. The respite care sounds wonderful. I imagine you are in need of it now more than ever. Please do take advantage of their service. Keeping you in my thoughts and prayers ((Mary)) Much love, Nikki
Mary , hospise is a wonderful thing, my brother had it, I wasn`t here but I understand they took good care of him and also the family,so sorry you have to endure another trumma in your like wish I could take you in my arms and pat you on the back and yes have a glass of wine with you, it`s hard but try to take care of yourself.(((((((((((((((((((((hugs and patS )))))))))))))))))))), Gail
Mary, I had the blessing of having Hospice help my family with my mother 7 years ago. They are angels here on earth and will provide the practical help necessary leaving you to interact with your LO in loving and caring ways. You are dealing with so much now that I feel my words will be of little comfort. But know that we really care about you Mary and in my heart I am holding you and sending you hugs and prayers. Love, SusanB
Mary, I am so sorry to hear that Dave has declined so much since the Feb. cruise. Everything I have heard about hospice has been positive. Here in Florida Medicare pays for their services.
Shelly has also declined. He was in day care two days a week for a few months. That enabled me to attend support groups and have a few moments to myself. As his verbal and physical abuse of me escalated my Alz Association contact (She has been my life line.) encouraged me to look at facilities for him. He entered a secure alzheimer assisted living facility May 22. What led up to that was so disturbing that I haven't been posting. Maybe some day I will.
Mary, this must be such a difficult time for you. Be assured that you have done the right thing. You have been in my thoughts a lot lately. Here's a big HUG!
Mary, So sorry to hear of this rapid decline of your lo. It is so awful to go along on a day by day and suddenly see a rapid decline. I for one always question whether or not it can be "fixed" until it finally sets in. Such a terrible ride you have been on. So glad to see you post. Keep our strong arms around you as you venture through this next bend in the road. We will be thinking and praying for you.
You all are so wonderful! I feel much better after reading your posts.
Dee, I am so sorry to hear about Shelly! It must have happened so fast! I'm so glad we got to meet. Hopefully we will get together again.
Sandi, you have made me feel better about not thinking about the dreaded 6 months....
I want to thank each and every one of you for your hugs, love, comments, advice and great words! It means so much to me.
My case manager from the insurance company called me to see what I thought about the Hospice group who came out and to see if I had any questions about Hospice, and that it was approved by my insurance! She also said I could use the Hospice hospital for respite 5 days EVERY MONTH!!!!! WOW!!! I won't use them all (I think that would be too hard on my husband) but it is nice to know it is there if I do need it!!!
I'm feeling much better tonight. Having you all to tell me I've done the right thing helps so much. THANK YOU ALL!
Mary, I've had several experiences with hospice and just can't say enough good things. That's such a good move on your part, and I hope it works out for Nikki also. Seems to me I recall bluedaze saying her husband has been under hospice care for a couple of years, another good example of the old six month rule not applying.
Dee, such a shame. Whether you post or not, please come back often just to get some support and understanding by osmosis. big hug.
Dee several of us had very traumatic events leading up to placement. If it will help you to vent this is the place. I was screaming all over the place.
Well Gang, its done i went to the app with DH neuro today to speak about declines and what our plans are for the upcoming future. Cant say enough for our neuro a very young expert in his field neurology /psychiatry.. both are welcomed:) he gave me everything i asked for, electric hospital bed, a lift chair for the living room so DH can getup easier, hopefully to reestablish movement easier, and HOSPICE. yes hospice, he said by all means -said DH is mid-severe stage- so dont feel you need to wait too long to ask about it. hospice with regards to dementia has its own set of rules-i will get setup later after first of year and get all the equipment needed in place too-. its always a bittersweet feeling to get what you ask under these circumstances. we've crossed yet another threshold and its not into a door i am really prepared to enter but know i must. i am glad to have the extra help later-so thats the good part. happy thanksgiving to all!! divvi
((Divvi)) You and I are so much alike in so many respects... I can appreciate just how you are feeling. Thing is, even after you take your deep breaths and cross the threshold, even after you have spent some time on the other side of yet another damn door, even then, we are never ready. I am glad you will be getting the tools you need to help you take care of your DH. Kudos to you for knowing what you need and for finding the strength you needed to take that next step. ((hugs)) Nikki
divvi, I don't think my husband is ready for hospice yet, but the county caseworker did send me hospice info, and it turns out that the one I'm most likely to be using wants people to call them as soon as they get a diagnosis of a terminal illness. I'm not totally sure why, but I think they want to get people on board earlier than they normally would because they know that a lot of people wait until too late and are sorry they waited. So I'm probably going to be calling that group during the New Year as well.
I'm so glad you are paying attention to what the doctor, and the hospice said. None of us want it to be time to go there, but all of us will at some point.
divvi, I'm so glad you will be getting the help you need. We'll all be at the point you are now, at some time. You have helped us all and I surely appreciate it. Hope you have a great Thanksgiving and things will be calm for you.
Divvi, I'm glad you are getting everything ready, so you won't be caught unprepared if he takes a sudden turn. It's two steps backward, then one step forward, then two steps backward, etc.
We all have to be ready. That is why I've opened up about everything with my husband and what has happened - so hopefully the readers here will know what to expect and what to do...
Divvi, this must be so hard for you. I sympathize.
There are times when I feel we're like people at an Agatha Christie house party.. think Ten Little Indians. People gradually - or not so gradually - slip away. Let's hold fast together!
Divvi--Sorry to hear that you have reached this milestone, but glad that you will be getting more help with your DH. I have found that although I know what is coming (in the abstract, not knowing when), naturally it hurts when the declines happen.
Divvi, So sorry the decline has progressed to the point of Hospice but yet glad they will be there for you. Remember Divvi, you mentioned that your Doctor got the electric hospital bed for you etc. Medicare will stop paying for the bed once you sign on to Hospice and they will then take over the durable medical equipment, most likely it will be the same type the Doctor has given you. Divvi, the one thing I can say to you take advantage of the respite they offer, I did not do that and now I wish that I had, it will just make the journey easier and possibly allow you to keep your DH home to the end of this horrible journey we are on.
Hospice accepted my husband into their program today. The Nurse hasn't talked to the Doctor yet but she will do that Monday. As of now I am to call them if I need anything. He has been declining daily for quite a while and lost many functions. He is still continent and eating and knows everybody and for that we are thankful.
However, he has to be dressed, undressed, bathed, teeth brushed, hair combed, shaved, partially fed, assistance with walking. He is not obvious of anything on TV, can't read. She said they will reevaluate him again in 90 days and if he is still declining they will renew for another 90 days etc. She said this does not mean he is going to die in 6 months because with these diseases you really can't tell. However, having had Hospice for my Mom I know how much help it is to me and I think this will be good for our whole family. I am getting a bath aide 3 times a week and no equipment for now. But, it is available whenever I want it. I really have everything except for the hospital bed.
Thanks to all the advice and help I have received on this site. It has been very valuable to me.
haven't been on the PC for a few days..reading this thread, seems like so many of us are in about the same position..Our DH are all in about the same stage. Mary, Divvi, and Imohr .. you have all done the right thing,as hard as it is...I feel that I am not far behind in having to do the same thing..Hugs to all of you....Rosalie
Thank you everyone and Jane, i have the paper rx from the wed neuro appt only just now for a hospital bed and chair lift. i am not going to fill it until i involve hospice after the first of the year and holidays over. then i will get with hospice for all the equipment the dr has ordered. I am sure Mary, Imohr, and I will all strive to make the best of having hospice at our disposal and what positive reinforcements that will bring - and hope that our experience will be encouragements for others who will follow. divvi
Claude was under hospice care for three months before he passed away last February 26. I didn't realize until they came on board how much I needed them both physically and mentally. I had just about reached the end of my rope.
He had several serious falls and his PCP had ordered Home Health care for several months previously. The RN came weekly and we could have had an aide to help him shower etc but after one try, that was stopped...."he wasn't going to let any other female see him naked"....LOL I knew he was declining but hadn't realized how much until Barbara, the RN, strongly suggested Hospice.
They were wonderful to both of us and having them on board made it possible for him to stay at home until the end. They were on call 24/7 and it was comforting to me to know I could call them at 2am (which I did twice) if there was a problem. We already had most of the equipment including a lift chair, but they did provide an electric hospital bed.
As Jane mentioned above, do take advantage of the respite care they offer. I didn't either and wish I had now. Good old 20/20 hindsight...LOL.
I still get a phone call from them every month or so asking how we're doing and is there anything they can do to help. They are having their annual Day of Remberance family gathering next Friday which I am going to attend. Once I get some personal things worked out, I plan on volunteering there.