I got another call from the ALF yesterday, they were going to move Mark up to the next level of care (4 of 5). A few hours later, the nurse called me again. Mark was very agitated. He ate soap. He was laying in a fetal position in bed and refused care. It took 3 people to put him in a wheel chair and bring him upstairs. He was refusing to eat. The nurse has never seen anyone with this steep of a decline before and this is an ALF dedicated to Alzheimer's patients. When the nurse asked me if I wanted palliative care or to call hospice, my heart sank to the pit of my stomach. I knew the day would come but I didn't expect it. He has only been in the ALF 1 week. I told them to call hospice. Mark and I had discussions when he was able to discuss his wishes. As hard as it is, I know this is what he wanted. His doctor wanted to run tests so he was transported to the hospital via ambulance (no sirin). We spent 6 hours there. He was sundowning pretty badly. There were a couple of times that he looked at me and recognized me. His eyes lit up and he smiled. Then he was gone to the disease again. It took myself and another technician to hold him in position for an xray. It took 4 nurses to use the in/out catheter for a urine sample. He fought us tooth and nail to change his depends. The doctor suggested a seditive but I declined. I want Mark's physician and neurologist to determine what he needs. The doctor knew exactly what my husband and I was going through. Her dad had Alzheimer's. In the end, all tests were normal. He was a little dehydrated though. I took him back to the ALF. It took 3 of us to get him to walk up stairs. He doesn't understand what it means to stand up anymore but once he stands, he will walk. We had a hard time getting him into the elevator. He didn't want to walk across the gap between the floor and the elevator. We got him some food and his nurse gave him some meds. We said our good byes and he stayed there not knowing I left. A week ago he was very upset to be there.
I don't know what else to say other than this is a bit of therapy just to write.
Dear Diane, I am so sorry you and Mark are having to go through this. It sounds difficult, indeed. Somehow you will survive: it sounds as if you've coped in spite of major problems. I've had some experience with this kind of situation, but when I try to think back and perhaps offer you some words of advice, my brain is numb in that spot, as if it's too painful to remember. There was a posting a few days ago, and I forget the context, but I've used it several times since. I think it was a saying that a military son had passed on to his mother: "You just have to suck it up and go on." I'll keep you and Mark in my prayers.
What is happening with Mark is very sad and must be terribly difficult for you to watch. I am so sorry. If UTI or other infection, or an adverse medication reaction have been ruled out, it does sound like the disease is taking an amazingly rapid course. I hope his PCP and/or neurologist will be able to order something to help calm him, for his own sake as well as yours. Please keep in touch and let us offer you cyber hugs and understanding, if nothing else.
Diane you poor head must be spinning. I agree with folly that some acute process might be causing the rapid decline. Hopefully it can be diagnosed and treated.
Dearest Diane, I'm so sorry that this is happenning so fast. This is bad enough without having a downward spiral happen so quickly. Hopefully, by now your drs have Mark medicated and comfortable. Please keep us posted. I pray for peace and comfort for you both. Arms around, Susan
Dehydration in itself can cause delusional and strange behaviours- its doesnt always have to occur with a uti. getting him to drink more fluids if possible could help. maybe the pedialyte ice pops for babies they use work well to intice them to drink electrolyte drinks. gatorades etc are good too. i have seen a huge turnaround once the body has enough hydration again. i also agree with the others that a sedative would be in order to subdue his outbursts. having them in a constant chaotic state doesnt help you or them. hope hes better soon. divvi
The pedialyte ice popsicyles worked really well for us when my DH wouldn't drink enough fluids. I'd put 2-3 in a bowl and he would eat them like ice cream (sorbet). Do whatever works! It's the potassium in them that is so good and dehydration depletes potassium. Chopped Strawberries added to the ice pops made it better..and increased the potassium he was ingesting.
The last time I called Visiting Nurses bec. my husband was going downhill, by the time they got here (a few days later) he was downstairs eating lunch and watching TV. They said he wasn't ready for Hospice, but Palliative Care, so they came for a few weeks and then I said that taking his blood pressure weekly and asking how he felt wasn't really worth the hassle of waiting all day for them to show up like an appliance repairman (I didn't say that to THEM) so they closed the case.
Now he's really really having trouble walking - episode of phlebitis the last couple of days has made it almost impossible to move him, his leg hurts so much. He was in bed all day yesterday. This morning I got him up as usual and with great difficulty got him to walk with his walker to the bathroom. I'm not going to try to get him downstairs, just to the recliner by the bed, but with his compression stocking on. The leg looks better.
My question, though: is it "unethical" to call a different hospice provider rather than the VN? Will medicare pay for it? He's certainly physically changed since last seen by the VN.
It is your decision about who comes into your house. Call whatever agency you are comfortable with. Hospice will come to your home for a free eval. If being on their time schedule isn't to your liking then you will have to evaluate if the help is worth the hassle. Certainly document his decline.
Clare...not unethical..you can use whatever agency you want. If you had VNA before, I would suggest Home and Hospice of RI. The difference between Hospice and Palliative care is mainly semantics. Folks, especially docs, had a tough time referring to hospice...palliative care easier to sell. Call me if I can be of help.
Diane, you are in my prayers tonight. We have hospice in now and they have been wonderful. I just cannot take care of my dh by myself anymore. I asked my husbands doctor to make the call to hospice for me, which she did. Our nurse comes out once a week for now and charts any decline. She said we are still in for a long journey together as he is just entering stage 7, but he cannot walk on his own anymore and is becoming more and more vacant. They are going to put him on O2 levels are below where they would like them and his bp is a little low. She feels it could be contributing to his agitation spells. So its pallative care too, keeping him comfortable which keeps me comfortable. I can work with their schedule as we are basically homebound now anyway. Hes almost bed bound. Its taken a huge weight off my shoulders and I love the company of the cna's. They are there for you too. This disease is different every day so I prepare myself for the ups and downs as best I can. Best of luck with your decission.
Claire, the first Hospice RN came over...visited less than 10 minutes before she said he wasn't nearly ready for Hospice care and spent the rest of the day talking about her problems and I was sooooooooooooo glad to see her leave. I was asked to call a different Hospice provider. They signed him up immediately and he died seven weeks later. Go figure!
I'd definitely call someone else. They look for someone who can't "do" for themselves. so..if he can't get up, dress himself, or bathe himself in the morning, that alone seals the deal. They have other criteria if he meets the first. Just don't have him up, polished and prepped for the visit. The earlier in the day they come for the evaluation, the better!
That enables them to see him before you have him "shiny and clean".
Clare, our situation happened similar to Nancy's except it was the same Hospice office. The Hospice here also has a Home Health seperate division and the Home Health people were here. I mentioned about Hospice's requirements. She said she wasn't the Hospice Nurse but she thought he was a long way from Hospice needs but said I could call them for an evaluation. I waited a week and then called Hospice. The Evaluator came out and examined him and talked with me and said she didn't think he met the criteria but she would turn the information in to the supervisor. A week later the supervisor came out and was also sceptical but finally did admit him for a 90 day trial period as of that day. So far, she had not talked to our pcp.
The next week began a rapid downward spiral that shocked all of us and he was gone in 2 weeks. He was continent and still knew us until the final few days. Nancy, Fran and I all had unexpected rapid final days.
"They look for someone who can't "do" for themselves. so..if he can't get up, dress himself, or bathe himself in the morning, that alone seals the deal."
My wife is unable to do any of these things for herself, but when Hospice looked at her they said she was not ready. Maybe I should have left her in bed. She is able to feed herself, but I often have to "prime the pump" by feeding her the first bite. I also have to cut up all her food. She sleeps all the time unless there is something going on.
Oh Marsh, call another group. Challenge their decision You deserve the help and MORE OVER, your dear wife deserves the extra care. Did you ever stop and think that they believe that since you are a "doctor", you can care for her yourself. (Forgetting the time factor, the exhaustion, the routine over and over.) Men are less apt to keep "at it" when it comes to asking for helpl Remember, a good quarterback knows when it's best to pass the football to the other guy....in order to win the game. Marsh, there is no doubt in my mind your wife is much worse insofar as limitations .. than my husband was when he was evaluated. I believe she is worse than Paul was, also. I don't understand why that firm turned you down. Doesn't make sense to me. Please try with another agency. Love, Nancy
New Year's day he didn't get up at all. Yesterday I more or less insisted that he get up, and he did, but it was a trial all the way. Today he was back to normal. Didn't even complain about his leg! But I know it's coming. I will call Home & Hospice Care this week. Because we have a two story house and my leg is off-and-on painful, keeping him upstairs is a problem (that's also where the only tub/shower is). I feel like I need someone to look at the way his room's arranged and help me figure out how to make it easier for him to get up and down, into the recliner and into the bathroom. I have a transfer chair but he has trouble figuring out how to sit in it. He's still very strong in his upper body.
Our Hospice coordinator not only provided the hospitsl bed, but helped me when I was deciding where to put it. Family Room, Living Room, Dining Room or Study...(Never considered in our bedroom...which was also on the same level). Less than pleasant thought but you could use the portable potty - Foster had one bedside after he broke his hip several years ago and I wish I could send this one to you! Beyond that, we're stuck with bathing, right? Claire?...so, there has to be a way Hospice has up their sleeve to help you decide what to do about that.. Certainly, in New England where most homes are 2 story or more..and most bedrooms and facilities are on the second level, they've dealth with this challenge. Because we are so accustomed to being the problem solver, it often doesn't occur to us to turn to someone else to solve our problems, Claire, and just maybe they will share an idea with you that you -in turn - will share with others on this site. In the meantime, I'm going to research "portable bath tubs/showers". Nancy
We also are now signed up for hospice as of today. I am sure DH had a TIA or ministroke on sunday that has caused him to worsen his mobility and speech. we will be getting things lined up this week with aides for bathing and RN to visit weekly. its not a good day to have to admit the time is upon us to accept the inevitable and that we need the help that hospice can offer. briegull sounds like you may need to call as well. i am sure in due time we will see what a valuable resource they can provide. divvi
divvi, so very sorry to hear the time has come, but glad you got hospice services to help and be there for you and him. Lots of ((((((()))))))))s to you.
Divvi, I know first hand how much help Hospice is. My husband has had Hospice since July, and though he has continued to go downhill, he is not out yet. They last sometimes 2 years after being first put into the Hospice program. We don't know - Sandi's was over three years. All this means is that you needed help, and now you are getting it. Help with bathing, help with medications, bed, and all the other wonderful aids and help that Hospice offers. You have been doing it all by yourself for too long. I, for one, am relieved that you will have the help you have needed!
Marsh and Briegull, let Hospice contact your doctors and then let them come out and evaluate. Just don't do any of the talking - let Hospice ask and get answers from your spouses. And Marsh, if your wife happens to get a bowl of say, Jello to eat, would she be able to eat it without prompting? My husband can still lift the fork and spoon if placed in his hand, and occasionally I have to "scoop" for him, but sometimes I don't.
Each area has one or more Hospice units and I swear that they all have different standards for acceptance into their programs. They will help you solve your problems. It took me a while to get over the acceptance, and utilize everything that they offer. It is not a reflection of what we can't do, but help for us so that we come out of this whole.
I didn't get around to calling them today - things are popping on my Monhegan front - but I'll do it tomorrow. I agree, if they come in the morning they can see how well he can get up and manage by himself (not!)
Divvi, I'm so sorry things seem to have taken a turn for the worse. Here, after Friday being impossible, he's been getting definitely better physically; Andrew had no problem with him yesterday.
So sorry, Divvi. We are never ready for the declines with our DH, but it is great that Hospice is there for us when we need them. Lots of hugs coming your way.
My husband didn't need hospice after all but he seems to of settled down. He is walking now. He seems to fix everything in site at the ALF. He fixed his room mates bed (he is in a wheel chair and doesn't talk) by taking all the bedding off of it. He does seem to be a handfull for them but they are equiped to care for him.
So many of us have had to call hospice in. ((((((((((((((((((((((HUGS)))))))))))))))))))) to all of you!!!!!!!!!!!
Divvi, I'm sorry that your husband is not as well as he has been, but glad that you have some help. You surely deserve it! Lots of love and hugs being sent your way.
Divvi, I am so glad you called hospice. I was reluctant for a long time, I thought I could do it by myself. Little 4'11 me just can't handle him and with a bad back. I tried as long as I could. Just can't do it all myself. But they come out three times a week for bathing him, we got a hospital bed and they are putting him on oxygen for comfort. Hes been between 84 and 88 and hes breating is very shallow. Hope he will wear the cannula. They are also talking foley cath. once we get him settled down. So it all has been a blessing. As have the meals on wheels from senior services. One less meal I cook a day and can just sit down and eat with him. Its been so nice just having them check in with us too. And the food was great today. Good luck with it Divvi.