I haven't posted a whole lot over here lately. Sorry! To update on DH's being home and doctor follow ups:
Oh, I tell ya, after the last 48 hours I know, that if things do not change I cannot do this. DH went to urologist yesterday, and was unable to do the void trial. I made the decision to do 3-4 time daily straight cathing vs permanent indwelling. Safer for patient, but potentially dangerous to the caregiver who has to do the procedure for the angry patient. DH is also having bowel issues. He gets a softener every night, but doesn't have the ability to make his bowels move. So, I have been having to help DH with all of his elimination needs. He had me going every 3-5 minutes following him into the Bathroom, insisting he had to go. I cathed him early today and got very little back. Later I cathed him and got alot back.... more than the amount of fluid he has drank today. I've been working on getting his bowel cleared but he darn near cries. I feel like screaming.."IT IS RIGHT THERE>>>>>WHY DON"T YOU PUSH IT OUT?????" Ugh! I'm sure just what you all wanted to hear about.
I do not know if DH is having a series of small strokes, or if his body has lost the normal functions. He isn't doing well with conversation at all, and on occasion cannot figure out how to eat something, or swallow his pills. Then all the sudden he can swallow and use a utensil. He is doing things like taking his pants down and thinking any place is the toilet. I guess if there is anything good about the fact he can't do those functions right now it is that he can't elimate in the wrong places. And this could change at any time.
That sore on his bottom I had nearly healed (nothing open at all) when he went in the hospital, but now it is looking atrocious. I fear someone lobbing accusations of neglect one day, but if they could only see that DH is on his feet walking all over, and sits in a great big fluffy lazy boy....never laying in a bed. The hospital apparently didn't evaluate it at all because all that was done for it was a tube of zinc oxide....which could have been ordered based only on a CNA's remark that his bottom was sore.
I'm a ramblin' on, I know. I am beyond tired.
All I can say is that I read of so many of you having endured much the same things for long times and I just cannot fathom how you go on, how you can do it. Only 8 days with DH home, first two were no problem, but already I am too near my breaking point. A little rest maybe and I'll see things a little different. I dunno!
So sorry for what you are having to endure. Is there any chance you can afford to put him an adult foster home or nursing home for a month? This will give you time to see all options and a much needed rest. Since he is appears to be stable on his meds, it should be easier getting them to accept him. Sounds like to me he is beyond home care unless you have someone come in - during the day at the very least.
For bowels, my sister gave her bedridden husband kiwi. It doesn't for me, but it works like a laxative for her and it did for him.
New Realm - My Mother had a colostomy and a lot of bowel issues. The Doctor told me to give her miralax EVERY DAY whether she needed it or not. I did so along with 4 stool softners. With her, the bowels almost always moved in the early evening after having the miralax with breakfast. I am following the same routine with my dh who also has bowel issues and it works pretty good for us.
I feel for you and don't know if I could handle it or not. Good Luck.
Diana-all this sounds like too much for any one person to do alone. Please don't die before your husband. If you can afford it would you consider placement. An ALF that specializes in dementia would probably give the best care. If they can also bring Hospice in so much the better. The staff will have a handle on dementia patients and some one from Hospice checks my husband almost daily. Between the home staff and Hospice all bases are covered. It has been working for me. Nora
it does sound as though its time for extra inhome help new realm. cathetering daily and caring for him may get too much otherwise. i would try inhome help first and see if that helps before placing him? but thats up to you and how much you can take. the toileting is quite a project esp in the beginning. there will be days you question your sanity.divvi ps make sure hes getting enough liquids he dehydates the bowels and urine will suffer.
New Realm, I'm so sorry you have this much to cope with. I support any decision you make to get yourself out from under this. I think it was in the book "Looking for Rose", or maybe it was an author interview that I watched, but she said that there comes a time when an Alzheimer's patient needs more than one person taking care of him.
New Realm, I agree with mary75. This is too much for you to do alone. It really might be time for placement or at least some extra help. I don't kow how you've made it this far. {{{{Hugs}}}}
New Realm, I know how very trite this sounds, but in large part the answer to your question is, we do it one day at a time. It definitely doesn't mean we have to do it all ourselves, however. It sounds like you've got way too much on your plate. I hope you will be able to get some help one way or another. Meanwhile, we're hear to listen and support.
I agree with others New Realm, You need some help. Even if it's a couple days a week, just to give you a few hours of rest. I am sorry your having all these issues at once. Please take care of yourself. I know what you mean about being beyond tired. My mom is having her kitchen remodeled and in the middle of it all she got really sick with bronchitis and pneumonia. So not only am I dealing with Dh and his issues I am caring for my 71 year old Mom and dealing with the remodel and all the clean up, hardware store runs etc. I am spent! But I know I will survive (I think!) I swear there must be something in the water, cause there seem to be a lot of unusual stuff going on for caregivers. Hope you get some good rest. Rk
Thank you all for your kind thoughts and hugs. I'm gonna get working on things (as much as I can) like calling hospice, first thing tomorrow.
DH did better through the night, tho' I did have to tell him a couple times that it was the middle of the night and he should go back to sleep. This morning he was trying over and over to get up. I decided he must need repositioning. I got his position changed ever so slightly, had him drink 100cc of water. He now has been sleeping pretty heavily for hours. I have not given him any meds yet this morning. It kind of gives the impression his meds accumulate and then dump into his system at once (or at least higher concentration). He had dreams during the night. In one he was yelling, "Jackie, Jackie. Come here Jack!" I woke him telling him he's ok, its just a dream. Jack happens to be the name of one of DH's best friends in his younger years. DH always spoke fondly of him. He was a firefighter, and he passed away in his sleep one night. DH really was rocked by that loss.
My son, dil, granddaughter just left. They were here all weekend and were helpful in a number of ways. They were really feeling sorry for me because of the constant up and down, having to potty DH, helping him to eat, basically being joined at the hip to DH. They could see how busy DH can keep me making it near impossible to do simple household tasks without interuption. It was difficult having the company in the house while DH was so hard to deal with. I had concerns about his chronic going to the bathroom, to do nothing. Or his swearing when I straight cathed. Starting to drop his pants no matter where he was. On the other hand, I was very pleased that they came. It was my Dad's birthday Saturday, and for obvious reason I could not go see him. I am glad they did go see him. They told me the staff brought out a jello with decoration on top and sang happy birthday to my Dad.
DH is still so sleepy today. I tried to feed him his morning pills with yogurt and he had an awful time. The one that says don't chew or crush is the depakote. Happens to be the hardest one for him to take. Some days he has no problems with pills whatsoever. This afternoon I put the depakote in cottage cheese and fruit cocktail hoping it would go down easier. I hope it went down. He keeps his mouth pretty tightly closed.
DH was up just once today. Went to the bathroom with guidance. He had been saying his stomach hurt. Well, Thank God....A BM happened!!!! He had to be cathed because he just cannot go on his own. Got 1000 cc. OUCH!!! Had a chance to really wash his bottom good with warm water and Ivory soap. So much better than baby wipes. The scabby loose skin that was on his bottom mostly came off with warm water and at least for now his bottom doesn't look nearly as bad as it did. Trying hard to re-heal it. Before his hospitalization it was pretty cleared up. The area was discolored, but no areas were open pre-hospital.
Having to feed him today except that he held his toast and ate that on his own. He's sometimes confused with utensils and straws. His speech is clear today when he does wake up! These variations, so many in such short periods are really, really weird.
New Realm, i am glad he is somewhat better. i guess yall did check out his kidneys? that 1000cc in one cath is alot! means his bladder is backedu p bigtime huh? my DH has issues with his kidneys and creatine is 1.7 normal for him. goes up and down and that can affect how the kidneys eliminate meds too. my DH can get days where they accumulate too if kidneys are sluggish..thats why we have lots of uti issues too. hope things get better. Divvi
New Realm - there is a foaming cleaner you can get that works real well. My sister used that on her husband. You just spray it on your hand, spread around and wipe off. She got at a pharmacy by SW Washington Medical Center. I think in another thread I once read someone talking about it.
New Realm, When I worked on a gyny ward as an R.N., we would check to see if a patient needed to be catheterized by placing our hand on her abdomen, over the bladder area. With a little observation and practice, you can feel how distended the bladder is and how much urine is there. That might save you from catheterizing and getting nothing, or waiting until the bump (bladder) in the abdomen is too big.
Thank you. I am an LPN, 25 yrs. I used to enjoy floating to post partum working with the new Mom's. I remember well checking fundi, and palpating the bladder too.
Because DH is getting in and out caths I hope to keep it at just 3-4 times a day with hopes he may eventually try going on his own. This a.m. for instance he went into the bathroom twice before I cathed him for just under 500cc. He "felt" like he had to go (so he said), and that is the goal. Seems recently the issue is that he doesn't have a consistent return of his intake. One time its just 100cc after he's had 300-500cc over hours. Then he can return 500-1000cc over night, despite being cathed before bedtime, and little to no fluids. His kidneys were in partial/acute renal failure at one point, which may be affecting the consistency in production of urine. Eventually I may replace the indwelling if DH continues unable to go on his own.
Yesterday DH couldn't do anything for himself. I fed him, had trouble getting his pills in him. He slept nearly all day. His speach was really bad. Confused. Today, he has eaten a bowl of cereal himself, was able to swallow pills, is sitting/rocking in his lazy boy and appears to be paying attention to the news on TV. Well, it is only 8:15 a.m. here. Still have a full day ahead.
New Realm, I just knew you must be a nurse or have some kind of prior experience to be doing what you're doing. Glad that today is a better day for you.