Talked to our PCP when I went in for my physical today. I am calling Hospice tomorrow for an evaluation. Our PCP will sign off on it for me. DH is going down hill fast and at least with the evaluation I will know better where I stand.
I know not to prep DH and let him just be himself. Is there anything else I need to do to make this go smother? I have talked with one DS and our 16 yo DD. Both are on board, will not tell anyone else until after we know if he qualifies.
I fell sick, but I know that I am doing the right thing. I hope we are accepted.
Blue, you're doing it right. When I prepped my DH, and spent some of the time telling the nurse about his life and all, he was denied. When the next group came by, I didn't tell him anything, and he pulled every trick in the book, including going to the bathroom and coming out with his pants wet. He was accepted.
blue...sorry you feel this is necessary, but I think Hospice is so wonderful and such a big help to us that had them when needed. It made me feel so secure to know I had someone I could call on 24/7 and they would be there to help me. My dh also loved the attention. Keep us posted. I did find Hospice never thought my dh was as bad as I thought he was. Of course they didn't know him when he was a well person...they had nothing to judge from regarding how much he had declined.
marsh--- It sounds like you have a very good Dr. A Dr. who brings the information to the table so you know where you are (as much as we can) and what's likely next ahead. You are fortunate.
At least with our PCP, I only had to ask, and he agreed to request the evaluation.
Another Dr. we had would not tell DH there could be no more driving and made the referral for the Driving Evaluation to get his license back, knowing the medical evaluation portion he(the Dr.) would complete would kill the application. Referring for the evaluation was tantamount to lying to DH, IMO.
As hard as it is, I am sure,to make a diagnosis of a terminal condition, and knowing informing the patient and family of that Dx is also very difficult, I still think sidestepping it with an interim Dx (MCI?) or doing as our dr. did about the Driving, is a disservice to the patient and Caregiver. It sure doesn't help us and undermines any confidence we can have in the care we're being given.
blue....my heart goes out to you and your family. But, don't count your chicken's before they are hatched. Hospice can be there for a long time. You are the one that really knows your dh and you can really judge for yourself better then they can. You will find the help you get from them will ease some of the burden from you. Please keep us posted and know we are here for you 24/7.
I know that we may have a long road ahead. But in my heart I feel like it will be sooner. DH was always a big man. And now he is down to 210. The biggest thing is his muscle mass loss. Arms, legs, hands, feet. Just in the past few weeks. When he lays down, his breathing is different and where his ribs end. His abdomen is con caved. You can feel each rib. The look he has is changed. It is little things, he is weaker too, I don't know how to put it into words. It is just a feeling.....
All I know is I have help and I prayed for wisdom and feel that God has guided me this way for a reason.
So sorry blue...remember, you know him better then anyone and your judgment is probably very right on. Take care and you and your family will be in my prayers.
Blue, Kathryn's doctor said I should have her evaluated last year about this time. I called Hospice and they came out. I was sure they would look at her and say she didn't meet the need to have hospice involoved at that time. That isn't what happened. They said she did meet the need and began the next day. She had only been diagnosed three years and 3 months prior to that time and you could have knocked me over with a feather. I thought that it was a death sentence and that she would die within six months. I can't begin to tell you how much it hurt to hear them say that. But guess what? It has been a year come March 8th and she is still with me and still walking around the living room. She has lost 100 pounds and I think I will loose her before to long. She is not doing well at all and the problems seem to just keep getting worse everyday now. But understand that being approved by hospice doesn't mean there is a date requirement. They are a great group of people who have made everything so much easier for us both during the last year.
Let them help you anyway they can. I personally think the best part is being able to call them any time day or night when you have something going on and having them help you understand what is happening and what to do and them come out to your house to help if it is needed. You learn how to handle more become more comfortable with you own abilities to handle them.
Update, Last Saturday DH kids came in for a visit. Even his estranged DD. I am so glad she came. We talked a lot and she now understands why so many things happened the way they did. Also keeping up with them both on fb now. Big news my DD and SIL are on their way home, stateside now and coming in tonight for two weeks emergency leave. I am happy to see them and yet saddened as to why they are coming. So many changes. I will be busy the next few days.
Blue - so happy for you about your family being there and understanding many things. I'm sure that is a help to you. We didn't have hospice long but they were such a comfort to me. Every time I see the silver star on our mailbox I'm reminded how diligent they were. (The star was because our house is not easy to find and that tagged us for them). My prayers for you and yours.
Just a small update. In the last 7 weeks DH has lost 8 lbs. He is down to 202 lbs. In the last week he is wanting to go to bed around 1 or 2 in the afternoon and sometimes sleep through to the next morning. His eyes are sunken in now. He does not eat or drink as much now. And moving very slowly. So sad to watch. He is also getting very stiff? His poor hands and feet are so thin, almost no muscle left on them.
I try to keep up with everyone here and am always keeping you all in my prayers.
((blue)) My heart goes out to you. I hope Hospice is being helpful. The loss of muscle and rigidity is tough to witness. There are exercises you can do to help with the stiffness, Hospice should be able to teach you them. If it is his hands, they also have tools they can place in the hand to keep it from clenching. Love and hugs ((blue))
Poor Dh is pacing almost all the time he is up, otherwise he wants to be in bed. And then is up and down until he falls asleep. He is more unsteady on his feet too. Lost two more pounds in the last week. Thank you for your prayers. So much I need to get done around the house, just can't seem to get it done. I just want to cry.
Just got word that DD should be home in two weeks! I am so happy. Please keep her and SIL in your prayers. I will be so happy to have both of them home from Afghanistan. xSIL is back as of three weeks ago and has the grandsons. On pins and needles. DH is still declining and now bitting his finger nails down to nothing. Going to ask the nurse tomorrow about any meds we can try. Need to calm the OCD.
Been so stressed that my house is looking really clean and organized. I do that when stressed. :)