Okay, you all heard about my "poop party" last weekend. DH is at least 10 lbs lighter now. I remember complaining about his growing stomach and the weight he had gained in the past 2 years, and some of you said to "let it go", that he would soon be lowing it again. Well, that sometime is here, I believe. Herb has really been off his food for about a month now. I thought it was because he was so uncomfortable with his GI issue, but with that is now resolved and he still has the pain in his back, no energy, no appetite, headaches, thirst, etc. His labs are pointing toward diabetes and kidney disease. I don't know what to do with that. How do you make a man eat who has no appetite? He wants to please me, but he simply has no appetite.
His cognition this past year has rapidly declined along with his energy. Now, with these new health issues I see an overall rapid decline. I asked myself tonight if he would see another Christmas and if he did, where would he be? I don't think he will die from the AD, he will leave this world due to some other health issue that will mercifully take him sooner. This is what I am sensing, anyway. I noticed when our dog all of the sudden got old. I remember clearly seeing him change literally overnight and I knew that he wouldn't be with us much longer. I watched our cat (my beloved Max) simply go off his food and not eat another morsel for at least 4 months and I finally couldn't take him starving before my eyes any longer and had him put down. He had a tumor and that's what animals do when they are dying, they go off their food. Some of you may think that my comparison between Herb and both of our beloved pets is odd, but I see the same things happening with him. I'm not feeling all panicky or anything (although I do feel a bit helpless because I don't know how to help him), but I am feeling resigned to this new normal.
On the brighter side, I've had the joy of having our two grand children with us the past 2 days. They are so much fun (6 and 10) and it is so great to have so much love. Being a grand parent is so grand!
Thanks for listening, y'all. Hope your holidays are bright!
I know what you mean about animals, it's a valid comparison on many levels, and g'children are wonderful, mine are young men but still great to be around, they tower over me. It's 1 a.m. here, try to get some sleep wherever you are. Take care.
I hope to hear from her early this week. With Christmas coming on Tuesday, and I know she will be on vacation the rest of the week, I really hope we can get some things sorted out before. He's still in bed and will probably stay there until at least 10:00, he's very tired these days. Gives me time to accomplish other things without needing to care for him, but, I do think he's sleeping abnormally longer hours now.
Have you tried a nutritional drink. BOOST saved me when i had bowel surgery and couldn't eat and bowel was not functioning. I started with a few sips at a time until I could drink a whole bottle and bowel started to work. It is loaded with nutrition. i still use oe daily to keep up vitamin and protein up. I like the high protein chocolate. There are also other brands 's maybe less expensive, i have to have gluten free and Boost is. My hb is hungry all the time but doesn't eat all on his plate, so like a child but in reverse.
Animal & human comparison is 100% dead on. The basic biology is identical. As a body dies it does things to both hasten the process and actually make it a little more comfortable. (Example: shallow breathing increases carbon-dioxide and CO2 has narcotic properties) Medical interventions can actually make death unnaturally difficult. (the reason for hospice)
Appetite stimulant . . . ???? THC & Marinol come to mind ;-) There is an extensive thread about marinol use by a member. She had excellent results.
Herb is trying to eat as I told him if he didn't eat enough he'd get dehydrated and end up in the hospital on IV's. That doesn't appeal to him much, so he is trying and I am somewhat hopeful. After Faxing his dr again about his lack of appetite, her assistant called me and told me that not eating was part of the progression of the disease. His dr also asked Herb when we were in last week if he needed a walker. What? Is she seeing things that I don't? In a short few weeks he's progressed from one stage to another and is going downhill so quickly? I've seen his cognitive decline going pretty rapidly the last year, but he's always been very healthy and now he seems to have diabetes (probably) and kidney disease that has progressed from stage 1 to stage 3 in just 2 months. Is this the way it happens with AD, declines come in huge dose all of the sudden? I'm wondering if he will see another Christmas??
I for one can tell you that is the way it progressed with my dh. In March we were able to go on a 2 week cruise and he really enjoyed himself. In April he had his annual exam by the VA and couldn't even sign his name, didn't know the month or year, etc. The VA dr. contacted Hospice and in May Hospice came and evaluated him and said they would place him under their care and see how he progessed in three months. He died Aug. 28. It was a shock to Hospice because they didn't think he was that bad when they first evaluated him, but it was not a shock to me. I could see how fast he was going downhill. One of the main factors that Hospice uses to record decline is how much weight the person loses. My dh also was not eating well and lost more then 10 pounds in 6 weeks.
Hopefully, it is not going to be the same with your dh. However, it is always best to prepare yourself and be glad you were wrong in your evaluation then to think they aren't that bad and be thrown for a loop when they do decline rapidly. At least that is the way I feel. Keep us posted so you have others here that can offer you support. Hugs.
My dh lost 10 pounds in one weekend after the laxatives did their job on his blocked bowels; I bet he's lost at least another 5 since then. I'm not sure he's totally unblocked, although his belching seems to have finally subsided. Our oldest daughter text'd me tonight and thought that her dad would be in a NH before the year is out. I couldn't disagree. I think he would be happier in a ADF, but do they take people who are as weak as he will surely be if he continues on this course? He can still dress himself, although he gets confused often as to where to put his feet to put on his pants and I always put his clothes out for him. Yesterday and today he has eaten enough to satisfy me and I think it has given him more energy. He's still going to bed earlier and sleeping later than just a month ago. His doctor told me to put him on a regular schedule and get him out more to move around. It's winter and cold and he's weak and wants to sleep.
So hard to know what to do. Many of you talk about having a social worker that helps you decide when/where to place your spouses. Is that because of Medicaid or VA concerns? We will not be going that route but I still am unsure of how to proceed and when. BTW, I am changing his doctor to my doctor; I asked her the other day when I was in if she would take him because I am not communicating well with his doctor and she said that she would. I feel much more confident that he will be well cared for with her. She knows me well and will not beat around the bush and leave me wondering what she meant, etc. I'm a bit shell-shocked that this is all of the sudden happening so rapidly. Even though he doesn't do much to help me and sometimes I think he is a huge burden, I don't think I will like him not being here, I will miss him terribly. He's a lot of work but he's usually sweet and easy to get along with (praise for medication). Being alone holds no appeal for me.
We all probably agree with you that "being alone holds no appeal". However, for most of us there comes the day when that happens. You might want to consider asking your doctor to have Hospice come and evaluate your dh so that they can maybe provide you some help. The social worker knows or usually knows all the various places that have help that can come to the home and the ins and outs of how to apply for help. The hospice social worker was super and gave me lots of support and I never had to place my husband, but I could not have done it without her. Also, the hospice social worker checked with the VA social worker and between the two they provided me with supplies and lots of support. Doing all of these things sooner rather then later was the best move I made in the effort to keep my dh at home. When people were sent to help me with my dh he could still dress himself, feed himself walk inside and outside without little problem...but, that all changed and I was so glad I already had the help I needed coming to the home 3 times a week.
mothert the local area Office on Aging in your state should have a social worker who can help you identify resources. Also the local hospital also has social workers and perhaps they would be agreeable to giving you resources. Also contact your local chapter of the Alz Association-they typically have a social worker who can help steer you towards resources. If you are working with either hospice or the VA you are typically assigned a social worker. Like any profession, some are better than others, so don't get disappointed if the first one you speak with doesn't meet your needs. When my husband was hospitalized the hospital social worker was useless...she was supposed to identfy facilities for my husband's placement upon discharge. Her advice to me was that since she was unfamiliar with the area we lived in and our financial situation she really couldn't recommend any facilities. Ironic because there were 3 very good dementia facilities within 10 miles of the hospital. If you can't find a good social worker you can always hire a geriatric care manager. They are pricey but might be worth it since they generally Charge by the hour ($110/hr in NJ). You can google geriatric care managers and you should get the website for certified managers in your area. They are typically nurses or socialworkers.
I believe the answer is yes. Your doctor has to request an evaluation from hospice. But, that shouldn't be any real problem for you they do this all the time.
Thank you. Herb will be evaluated by my doctor on the 4th as I don't find his doctor responsive or communicative to me. My doctor is fabulous and I think my man will get much better treatment with her.
Update: DH is eating again. After I insisted that his PCP order him up an RX for appetite stimulant, she did on Christmas Eve, and he started taking it that day. I have to tell you, that last week all the way through Christmas Day, I thought I would be planning this man's memorial. But, after a week of eating fairly well (not as good as he used to, but much better than he was this past month), the memorial if off, at least for now :-). He's pretty much back to our new normal. It's amazing what a little fuel in the belly will do for a man. He's still sleeping 12-14 hours/day but he's just perkier. He even went with me to church this morning. I'm encouraged.
The night before Christmas I Fax'd his doctor telling her that he wasn't eating. After MY doctor's assistant went over to his doctor's office (they're in the same clinic) and told them they better call me, they finally did. And, then you know what they told me regarding his not eating? "It's just the progression of the disease". He is now a patient of MY doctor. I was fuming. Thanks very much to whoever told me to try an appetite stimulant, it seems to be working very well.
I will ask our doctor to order a Hospice visit and a OT/PT Home visit to make our house safer for him as he has already tripped and fallen in the hallway. The walker is sitting in the garage so he can get used to it. I told him that last week he could barely walk and maybe we should just take a look at this so that we will know how to use it when we need it. He seemed to be somewhat ok with that approach. And, I am visiting AFH's to see about getting on some of their lists - the ones that I feel are suitable for him. I know that when the time comes, I won't have any time to be picky.
It's so nice to be able to share this all with you. Thanks so much for being here and all of your advice and comments, they're so helpful and it's so nice to have friends who truly do walk in my shoes.
mothert, did your doctor order Remeron (mirtazipine). That is what I got the doctor to give my mom when she stopped eating. It did the trick for her. I told her doctor that he was giving her pills for everything else...why not give her pills to make her eat.
My mother died of kidney failure. I swear she planned it. She just didn't want to be here anymore and I believe she researched it and knew death of kidney failure was about the easiest, most painless way to go.
Good news is so welcomed since we seldom hear any. Glad your dh is eating again. Good idea talking about the walker to your spouse. I told Jim early on when he wasn't ready for the walker that the last thing he would want to do is fall and break his arm or leg and have to be in bed. He seemed to know when he needed it and just fell into the routine of using it with no problem.
Linda Mc, I take mirtazipine (Remeron) as am antidepressant, though I just looked it up and increased appetite is listed as a side effect. I learn something new every day. No wonder I'm gaining weight :).
My dh is taking Megestrol Acetate, a synthetic progesterone, to stimulate his appetite. Seems to be working well as he is the same old guy as before all this started. It's amazing, last week I was sure he wasn't long for this world and today, he's back to normal, well, his new normal :-__
mothert, my cat takes that! She has hair loss problems. It works a treat for her (and her appetite is excellent now.) So glad to read that you are seeing some improvement. Ps: I wasn't being a smart alec, just didn't realize that it was a human drug!
MaryinPa, that's a heckuva side effect for an anti-depressant. Boo, manufacturers. Sometimes the side effects are worse than what you're trying to treat!
I took dh to see my doctor yesterday and found out from her that he does NOT have diabetes (yay!). He does have Chronic Kidney Disease, but no diabetes, PTL. Since beginning the appetite stimulant he is eating normally (for him) again and back to his old self. He is now my PCP's patient, fired the other one. I know I said this before, but I'm sure grateful to the person who recommended the appetite stimulant, it's working very well, indeed!