Exhausted, frustrated and need to vent....
Hi Everyone,
It is now 4:30 am and I have been up since 9 am yesterday (except for a two hour nap yesterday afternoon). It has been quite awhile since I last posted. Well mainly need to vent but will welcome any advice. Please bear with me. I feel like running down the street screaming. Ugh. First I have not posted much as I have been dealing with my health issues and my honey's. As well as the fact we are about to have our electric and water cut off....ugh.
Well anyone who read my prior posts knows what the situation with my honey was from Feb to June of this year ( actually since Nov 2017). Well we are in round 2. When my honey got out of the hospital and rehab in June he weighed around 167lb and with home rehab plus the rehab he had been through he had full mobility. Well as soon as the formal home rehab completed, my honey started slacking off and his weight started going up. He went up to the 180's and in the last week has gone from 197 to 206.6 lbs! During this whole time he has blamed his weight gain on my cooking ( as per dr orders I cook low sodium, low carbs and high protein) and everything else he could except himself. Now he has a tummy that Santa could envy, his legs dimple when you touch them and his genitals are double their normal size. As I pointed out the changes that have been occuring (hoping he would at least start walking around the house some) he told me to quit nagging and advised that I am a fine one to talk about weight. Told him I am not the one gaining ( I am down from 206 to 179lbs). And he has fallen 4 times since the end of October. One fall he injured his ribs, bloodied his nose, tore his knees up when he and the walker fell. Each time I have called the FD partly as I cannot lift him, but after the way he treated me during his last hospital and rehab stay so that it is documented that I am not mistreating him. (Wouldn't hurt or mistreat him for the world). Tonight when he could not get off the toilet (even though it has a 5 inch riser on it) without my help I noticed how the fluid retention had increased and mentioned it. His response was that I am just trying to build a case to get him in the hospital. My response... I don't have to as you have already built a case against yourself.
I am so worried about him. It seems like since doctor told us that he is dying and may not be a candidate for a heart pump he has given up. (that was a week ago last thurs) He has been gaining an average of 1 lb a day since then. He is dehydrated but won't believe me as he only believes what the doctor and nurses tell him. His skin looks like crocidile skin. He is bruising very easily and I can't get him to go to the hospital nor can the paramedics. And he is only 66. I have advised him that if he cannot get up on his own tomorrow he IS going to the hospital....period.
Will write more later. Thank y'all so much for listening. Right now I am exhausted and am going to crawl on the couch to try to catch a little sleep. He has been sleeping sitting up on the couch for the last few weeks so don't want to be too far away in case he needs me.
My honey does not want me to tell his brother and SIL what the doctor said last time or anything about his edema. But they are supposed to come up the 16th unless he is already in the hospital. I was going to stay up and work on a painting I have been working on, but just too worn out. Y'all have a great day.
When I say it has been a heck of a day (actually several days) today I had to have the fire department out to help get my honey off the couch. (that was the third time they have had to come out since last Friday). He still would not go to the hospital and would not listen to me. When the home care nurse came out today I was trying to help him up as he had been sitting on his rollator and he could not get up and I was not strong enough. The HCN took one look at him after I tried for 10 min to get him up and said hospital or er. I advised er. She called the heart failure clinic, called 911 and my honey never argued once. The hospital admitted him and he is undergoing tests.
Not sure why he ballooned up as I have been fixing food that followed the low sodium, low carb and high protein diet he is supposed to be following. He has had his IV for 6 months this month and I am praying it is not the beginning of the end. Oh, by the way I told his brother and SIL tonight exactly what is going on. They are family to me as well and have been wonderful and they are coming up Friday and will be over on Sat. I can't wait to see them.
Right now I am so wound up and worried I can't sleep though I am exhausted. Will write more later. Y'all have a great night and sweet dreams.
I recognized you by the “my honey” you always use to refer to your loved one. I think that’s very sweet :)
Out of curiosity, you said he has mobility problems and many times he cannot even get up on his own. And you also explained you cook according to the diet the doctor advised him to follow, right? So, if that is all he eats at home and he cannot get out on his on, how is he gaining weight? If there is no junk food around and he can’t get out to get it, I don’t understand what is happening as to his weight gain.
The relevance of that is that if he is not over eating or eating what he shouldn’t then there might be something else serious going on health wise.
And do you mind refreshing my memory as to what exactly is his health problem that you mentioned could even be fatal? Thank you.
As far as what he has asked of you, that you don’t tell others what is really happening with him. You know your family dynamics, but if this is turning into something that you know in your heart you cannot manage on your own (physically, emotionally, financially) maybe it is time to rethink the situation, don’t you think?
Sometimes we become trapped in our own trap! It is always good to keep in mind that we may be leading our own life down the wrong path, having the chance to change course.
It worries me that you said you’ll be without electricity and water soon! That will actually make you unable to care for him..or for yourself for that matter!
Sincerely hoping your situation doesn’t become even harder than what it is and that you become stronger and wiser, and able to overcome any new difficulties!
Snoopy, trying to get assistance from a local group. Will know tomorrow night if we got it. Please say some prayers for us.
Barb, that is what the problem is. But his weight is starting to come down. He is a little more mobile today. I have already told him that the mobility does not return he will be going to the hospital as I cannot physically do another round of lifting on him. I will find out more if hospice care is in order when he goes back the 19th. I he totally loses his mobility and cannot care for himself I will not be able to care for him at home. I think he is partially playing ostrich (sticking his head in the sand ) as I don't think he wants to admit his physical status. I know he loves me and we have not had a repeat of the situation that we had from earlier in the year.
Cwillie. I believe he does understand and care but is scared to death. I don't believe he know the extent that this and the past year have been affecting me. I have been his caregiver since 2005 with no help and it was not as rough as the last year. I think the hardest part emotionally for me is knowing that I may lose the love of my life. We will have been together 31 years in March.
It sounds like he is filling up with fluid and may start to experience shortness of breath and air hunger. Can you talk to his doc by phone about ordering a hospice evaluation?