My DH is experiencing going through not eating again, having trouble swallowing food and meds, has lost 24lb since Jan of this year 18lbs in the month of January and 6 since March 28th. This past week he has really bad diarrhea and is only taking sips of water or juice thru a straw. WHAT SHOULD I DO AT THIS POINT? I have been told it is time to get him evaluated for Hospice which I did and they wanted to put him in the program but I wasn't ready. I took him to Assisted Living Facility on March 28th for respite supposedly for two weeks it cost 2660.00 I only lasted 1 week ..going there everyday bathing him, feeding, etc. He was doing well the first 2days but the nurse said he showed a significant decline and maybe I could take him home and get him back to eating and try to hydrate him...well he lost 4lbs in there in 5 days..and since he has been home which is 5days he has lost another 2lbs. When they don't want to eat ..what to DO? who to call? ALso this morning he complained of chest pain..which he has never done.
How was that respite for you when you had to bathe, feed etc.....every day? You may have to consider Hospice even though you are not ready. You also have to consider what measures you want to maintain him. He is probably dehydrated and that causes even more problems that you will have to come to terms with. Has his Dr. said there is nothing more to do? Will pray for you. <<<hugs>>>
You may not be ready for Hospice help but he is. The wt loss and dehydration is only going to make things worse for both of you, for him physically and you emotionally and physically. My mother got to the point where swallowing was difficult if not impossible and for a time we were able to get her to eat baby food but that gave way to sips of ensure...but it was difficult to even get 500 cc of anything in her and that won't sustain life. We were then faced with the feeding tube question and my dad said no to that as it has it's own inherent problems and only delays the eventual outcome. This is a very difficult time and you do need help to care for him. If his doctors recommend hospice care you would be wise to consider taking advantage of it. It may well give you some rest and reassurance and provide some improvement for him for some time. You cannot do this alone and the care facility has as much as given that advice. Hospice is a wonderful resource and often people do improve for a time and are certainly made more comfortable. This is such hard time for you and we all empathize with you and this decision that eventually we are all going to face one day.
angel hospice will be of great help to you. the connotation of hospice brings with it a sense of last days. its not, many of us have had our spouses on it for many months. if he gets better after their coming they will discontinue and you call them out again when needed. its not indefinate and they will offer you much needed help and advice. they are specialists for what your spouse is going thru. if anyone can relate toyour feelings its me, i had a VERY difficult time admitting my DH to the program as well. but its been the best source of help. please reconsider using the help you can get. if hes losing lbs they can give you suggestions and will be there to supervise his care til he rebounds may be he has a cronic stomach issue thats causing him to lose weight so suddenly.. divvi
It wasn't much respite for me because the whole time I wasn't with him I was crying and felt real lonely...I mean of course I feel lonely of the roles have changed from wife to caregiver...but I guess when the kids are grown and gone and it's just the husband and wife in the house...it was real lonely. Not only did the docs and social worker recommend Hospice they also recommended Nursing Home soon..because some days I can't get him to stand up let alone walk at times...have had trouble where I couldn't get him in the car because he has totally forgot..and we were trying to go the doctor's appt. The doctor's are saying there is nothing else they can do. My husband is 61 diagnosed three years ago with FTD\EOAD ...my former name here was ftd but i changed it ...because that is what he has not who I am.... Is there a way to see if he is dehydrated while at home...I am dreading going to the VA ER the first time we went sat there for 14hours...the second time it was around 6hrs.... What is consider how much a person in this state should he eat or drink...oh I forgot to mention he is over 6foot 5inches.....weight is now 164lb
Angel, you have to look into Hospice. The most common misconception is that when you bring in Hospice, the loved one is going to die. That is sooooooooo not true. They are wonderful help for you, and they will be in your home, so you won't have to sit in a waiting room for hours. They help him bathe and dress and get up and down and you have support both physically and emotionally. I personally know people on this site who have had their spouses under hospice care for over a year...or more.
I understand how hard it is to let go and trust that someone else can take care of him too...just as well as you can. You will be gaining some help, not losing your husband. They are not going to take him away from you. If you are not abusing him, you won't lose him. If, however, he could do better in a hospital-like setting, with nurses and aides, wouldn't you want that for him. I read several lines in your post where you say that YOU hate waiting, that YOU don't know how to give him his necessary nourishment. I hear you crying for help, and you have to let that help come in your door. You love him so much, I can tell, so you should want to do everything in the world that will make him more comfortable and help him gain back the weight he lost from not being able to eat or drink. He may need to have soften foods, or pureed with nutritional products added. None of us are qualified to advise you what to feed him. That's what you would gain from the experts in a hospice program. They have RN's, LVN's, Certified Nurse Assistants, Social Workers, Dietitians, Spiritual Advisors.... all at your beck and call... and it will not cost you a cent.
If you do agree to call in Hospice to help you...I promise you will be so glad you did.
angelb, you definitely need to get him on hospice and possibly in a nursing home.What's going to happen to him if you make yourself sick caring for him. My DH has been in the nursing home for a year and a half. Just recently the doctor said to put him on hospice as he's aspirating his foor and liquids. Yes, it was quite a shock to me when I heard the word "hospice" but many of my friends who have or had spouses on hospice have told me that they can be on it for a long time. Right now DH has to have his food pureed and liquids thickened to honey consistency. He's not bed-ridden and is always in a good mood with everybody. And, still knows who I am. He is in a wheelchair all the time tho.
Angelb, Please please please listen to the advice being given you here. I told you earlier how things got with my mom. We had in home help 24 hours a day. It was very costly and often people didn't show up when scheduled and that was a real headache.
You mentioned in your post that some days you can't get him up let alone able to walk. What happens when you and he fall? How are you going to get help? You are worried about his nourishment and rightfully so. There are so many things we as the primary caregiver/spouse are not trained to do and we do need that outside help.What is your efforts to do this all alone cause you to have health failure? Then what? For your sake as well as your young husband, take the advice and protect yourself and him. Wouldn't it be better for him to get the professional help he needs now so that maybe his overall physical health might improve some, your health be preserved so you can spend quality time with him rather than being beat to death by this disease that one day will claim him unless something else does? Don't let it claim you too.
The sad and very hard truth about this disease is that it is always fatal unless some other disease process gets there first. In my DH's case we face the issues of heart disease, stroke, diabetes etc..so any one of those conditions could drive me to make the decision you are now facing.
if your DH is severely dehydrated he will more than likely need a bag of fluids via IV. and that will happen in the ER/ his potassium levels and bp can be affected if hes not getting enough fluids. the drs will only tell you to take him to the ER if hes not well. if nothing else you can have him taken by ambulance i would think and they will get him in directly to see a dr at the ER much faster. if y ou have visiting drs or a lab that can come to your home it will help you alot until you get hospice. i dont think you should wait to call hospice out. they will help you with the hydration and check for uti and what hes eating. you will have a dr and nurse to call 24/7 to call out anytime. divvi
I am soooooooooooo sorry that you have to go through this! You love your DH and you don't want to make any mistakes and I can understand that. We all love our husbands and wish this wasn't happening to them. We need to do what is right for them, and when you do that it will be best for you too. Until I came to this support group I didn't know what hospice was really like and now I see them as a part of my life for the near future. The stigma that hospise has had of only taking care of people that are close to death is unfortunate because it just isn't true. An example of this is, I know of a lady who had a liver disease and she thought she was only going to live for another 6months so she got on hospice and they came to her home...she ended up being on hospice on and off for 2 years.
I want to say thank you all for your comments...I will make some calls this week. This morning he had dropped another pound he is now 163....this is way to low. I prayed real hard this morning and he ate his breakfast, lunch and dinner.eventhough I got fluids in him today his only output was 50cc which I know is nothing. Talking to family members everyone keeps saying to wait he is not ready for hospice because they are under the impression that hospice will stop all meds and since he has other medical issues......he must have his meds and if not he will fail real fast. Anyway I will call a different Hospice company this week and see what they have to say. Also his pressure sores have now opened up and are now bleeding....they have never got to this point and I know this is a bad sign as well.
angelb, it sounds as though your DH is dehydrated...if his output is only 50cc....is that in a 24 hr period? Is he still having diarrhea? You may want to place a call to his Dr. or whoever is on call for him; it is possible that they will want to have him got to the hospital for IV fluids and monitoring. Also this may be the way to get the doc or a social worker to answer your questions and concerns; and possibly contact Hospice for you and get the wheels in motion for an evaluation from them.
angelb, It is sounding as though your husband is declining rather dangerously. I would not wait, make the calls and get him to the hospital now to have the wounds attended to lest they become really infected and lead to even further discomfort for him. Also he needs fluids to balance his electrolytes...If the potassium levels drop too low, if his BP drops too low he will be in critical condition. My brother in law, who is an insulin diabetic, was just in hospital for a week because somehow his values got out of whack and it was a delicate dance to get him stable again..don't wait. As to family members, they are not ultimately responsible the decision to have your husband go to the hospital or on hospice. That is your call. Don't be afraid to do this. Hospice is wonderful and they will not with hold medications needed for another condition. They are there to provide support and comfort for your husband and you and your family by extension. Feel free to ask them any and all questions and concerns.You will be doing the right thing for your husband and yourself in the long term. This is so very hard, we all know. It frightens me reading your post about the bedsores breaking down to open wounds..that is not good..Take heed and we are all here for you...keep us posted...
Angel, they WILL NOT STOP THE MEDS if you want to keep them. DARN IT... listen to those of us who have been in the trenches with Hospice, not people who 'have heard that...they do this or that". This man will DIE if you keep hem-hawing around, discussing his health needs with whoever you meet. Let Medical People decide what is right to do. If you are the CAREgiver, then CARE for him. I don't want to upset you, but you are scaring me with what you are writing. When you have a question, why don't you call the Alzheimer's Association 24 Hour HELP Line. It's available all across the country. Trust those who KNOW what you are having to do and trust them to give you solid advice. After you get into Hospice, they also have a 24 hour help line with nurses who will talk to you about what to do.
if he has open pressure sores its obvious you have waited too long already to call hospice or to start his treatment for his issues. like the others are saying if you dont take action pronto he may decline to a point of no return. sorry to lay it out here so bluntly, but those of us who have been thru this part see how critical it is to get him help now. most of us have to come to a point that its not what you want at this point but whats best for him.
April 13th admitted to the hospital for one week they only gave hime iv fluids for 24hours recommended hospice when to rehab for physical therapy and woundcare from April 21- May 5...developed a UTI and pneumonia they only gave iv fluids for 72 hours on May 5 to May 16th was transferred from the rehab to the Palliative Unit as of May 16 he is now home on Hospice....he is weighing around 146... he was 151lbs on May 5. This week well on Monday he did well with his dinner pureed meatloaf, mash potatoes, and greens.....As of the last 3days he is not harding eating and taking sips of water...this morning when I tried to feed him he actually held it all in his mouth and then spit it out...I really dont know what to do now....when I called into hospice they said don't force him to eat or drink. okay I am not forcing him just trying to give him something. How long can a person go without eating or drinking enough to sustain... I am talking he is definitely down to about 400 cal for the whole entire day... will try pudding or applesauce and see what happens. He has never spit out his food before this is entirely new and I know the little he was getting now its down to nothing. I AM REALLY WORRIED NOW ...he cannot get iv fluids at home...on hospice where they wont allow him to get any iv fluids...NOT EATING????????????
Dw displayed similar symptoms in mid april. After three weeks she was so weak she couldn't stand. Per Dr's order entered her in hospital icu for three days and lots of iv fluids she started to regain awareness. This was followed by three weeks of nursing home care and physical therapy. She regained enough strength to come home. After three days home due to extreme nausea she started to go back downhill. A call to PCP and new stronger nausea medicine and the nausea seems to have stopped or at least lessened. She has started to respond and is starting to eat and drink again but very slowly. Still sleeping most of the day even though aricept and several of the other meds she was on have been stopped. Only meds now are namenda lexapro ativan and the new nausea med omdansetron generic for zofran. Full recovery still in future? All we can do is pray and trust in God.
i have one of those turkey basters and use as a syringe with icecream shake and add ensure. they may be able to get some nutrition down by sqeezing bits of liquids with the syringe like this. i have used it often when DH doesnt want to drink himself.. also pedialyte for infants for dehydration. they can last without food for sometime but without enough fluids its going to deteriorate quickly. so sorry to hear he they are both taking a slide. divvi
angelb, for whatever it's worth, I'll share with you some words about not eating/drinking that I had posted to this board or else written to family during my wife's final weeks some 21 months ago:
"From 7-14-09 post to Alzheimer Spouse message board :.... as I'm also concerned about my DW's not eating -- she's lost 15 pounds in the past few months -- 5 just in the last month -- down to 110 pounds. The hospice nurse was here yesterday and said that there were a couple of drugs that might be tried to stimulate her appetite if we wanted to try that. I'm not sure that her not eating is actually a matter of having a poor appetite, but anyhow I agreed to try, so the hospice doctor prescribed a 15 day supply of Dexamethasone 4mg tabs, which were delivered by FedEx just a few minutes ago....."
"From 7-27-09 e-mail to family:....Frances still isn't eating well, and hasn't shown any improvement since she's been taking the pills prescribed a couple of weeks ago by the hospice doctor in hopes of stimulating her appetite. Increasingly it's beginning to look like it's not a matter of her not having an appetite, but rather maybe just being tired of it all and ready for it to end. Son Bill and I had a long conversation about this a few nights ago, and both agreed that our continuing to push her to eat might not be the right thing to do -- she may just be doing it to not let us down. When I was trying to get her to eat some breakfast one morning recently, and telling her she needed to eat some to maintain her health, she said, "So then I guess I'll just be dead." I asked her if she was really serious in talking about being dead, and she said, "You never think I'm serious." I tried then to tell her that I loved her and didn't want to let her go, but that I also wouldn't want to force her continue to hanging around in pain and feeling tired all the time if she was ready to go -- but I started tearing up and couldn't get the words out. I'll try again later....."
"From 8-29-09 e-mail to family:.... She hasn't taken any food in the past three days, and probably only about 8 ounces of water in that time -- just a few small sips yesterday and none today. Nor has she really roused from "sleep" during that time -- maybe looking up and smiling briefly at Rev. Jeff and trying to touch his hand on Monday, and maybe opening her eyes and looking at Julie on Tuesday. The hospice doctor visited on Tuesday and said that once they stop taking fluids, they usually die within five days, so we could be looking at this weekend. Thankfully she doesn't seem to be experiencing any pain except when we have to move her for changing a diaper or bathing her, and just in the past couple of days we've been giving her a small dose of liquid morphine beneath her tongue beforehand to take the edge off that discomfort. And we've also begun giving her Ativan anytime she starts to fidget and tense up her arms and legs like she thinks she's falling -- and that seems to calm her down and she sleeps peacefully for hours....I shed lots of tears last week, almost any time I was at her bedside or tried to talk with anyone about her, but I'm doing better this week. I had told someone last week that I could probably write a country song about "those trusting eyes" that she looked at me with -- trusting me to not let anything bad happen to her, and yet bad stuff WAS happening and I was powerless to do anything about it. That hurt a lot. But this week her eyes are mostly closed, and maybe I've also more nearly come to terms with things. Making the decision to not push her to eat was hard, notwithstanding assurances from the hospice folks that she doesn't experience hunger and thirst as we do. I have realized, intellectually, that pushing her to take a few more bites or sips could only serve to extend her life for a few more hours or days, and that these hours or days weren't really good ones -- not for her and not for us. But emotionally, it was so hard not to try -- I'd feel like I'd "won" a small victory if I got her to take a bite or a sip...."
"From 9-1-09 e-mail to family:....Always one to do what she was supposed to do, Frances slipped away gracefully and peacefully in the early morning hours on Monday. I had spent the preceding three nights at her bedside, holding her hand while dozing off and on in an armchair next to the bed, as she grew weaker and her breathing more shallow and labored. She hadn't made any response to anything since the previous Monday, and hadn't taken any fluids since Tuesday. The hospice doctor had told us that once she stopped taking fluids, she probably wouldn't last more than another five days, which proved to be true -- she just finally stopped breathing at about 4:15 AM on Monday."
((GC)) very emotional, thank you for sharing your private letters with us....touching and I am sure your words will help many when they are faced with this same situation. I have often thought about you and wonder how you are, good to hear from you ♥
I could have written the same schedule of events in my mom's last few weeks too. It is a mirror of what GC has shared. How I too felt like it was a small victory just to get 500cc of anything into her.
We are now facing this with my dh's sister whom we learned was admitted to hospital yesterday. Potassium levels very high, dehydrated, etc..sleeping a lot and just sort of out of it.I think it does not sound good.
Angelb, this is a hard one for me to reply to. I have had great experiences with Hospice. But I did have had bad ones too. about 2 years ago when per a phone conversation, they told me not to "force" Lynn to eat or drink. They had never even met him!!! I was not happy with them or their "advice". Most Alzheimer's victims do qualify for Hospice, but that does not mean they are actively dying. Lynn wasn't and I am so grateful I didn't listen to them and followed my heart. We have been blessed with 2 additional years (and I hope many more) we would have missed out on had I listened to them.
Having said that, it is hard for me to give you advice on this without knowing more information. My Lynn wasn't "active dying" he was weak and just needed a boost so he could rebound. I don't know if that is the case with your husband? Or if he is further along as ((GC's)) wife was? Has a doctor, other than Hospice seen your husband?
I had an Uncle on Hospice for over 2 years. He was given IV's, antibiotics and treated for illness. Hospice does not mean no treatment. Unless of course they are actively dying and on "comfort care" only.
Dehydration is very serious and has severe effects. IF your husband is doing well except for the dehydration, and Hospice will not give IV in the home, I personally would take him to the hospital. If he is dehydrated, he will not feel like eating or drinking.
Is your husband on an appetite stimulant? Megace worked wonders for Lynn.
This must be very difficult for you and my heart goes out to you. There are several topics here about not eating... one of them is "How Low Can You Go/Weight Loss in the AD patient" ((hugs))
Gourdchipper thanks for the letters during your difficult time...Nikki my husband has been on Megace for the past 2years and he is on the maximum dosage..Hospice would like to switch it to decadron because Megace is not on formulary for them. My husband has seen Hospice doctors in the hospital during the week of April 13- 21 observing him trying to convince me to put him on Hospice..at that time I did not,once he was transferred to the Palliative unit on May 5 of course he only seen Hospice doctors. Home on Hospice started Monday May 16....Tues When the nurse visited the home last week he said your husband will not die in a week....not in a month... but probably 3-6months...... the the social worker comes out the next day and says I should start making funeral arrangements. My husband doesn't look good ....I think this far has been the biggest change since he is now bedridden. I also feel he still has pneumonia ...but not sure as you know noone will do any extensive testing. I guess I really don't know what is really going on but I will definitely contact his family who all lives out of state to come see him if they would like to. Haven't had much support from that side ...but I don't want to wait until it is too late where he is unconscious to make a call to them.
angelb - Gourdchipper has written a lot that I agree with.....He evidently does not want to eat ....maybe he just wants peace.....sometimes there is a lot to say for peace.....take care...
angelb...so sorry to hear what you are going through...it sounds as though you are doing all that you can to keep your husband well cared for and comfortable...bless you, stay in touch.
I think too you are doing all you can in this delicate situation. I tend to agree with what Nikki said and dehydration is really serious bc it can cause all systems to go out of synch such as heart rate, bp and more. I can appreciate your confusion with what the hospice people told you and the social worker. Whom do you believe? That said, if I were in your place and the social worker said to start thinking funeral plans I would look into this. While it may not be in the near future, it will come and when it does there is nothing worse than not knowing ahead of time what facility you would want to use let alone how you would like a service to be conducted.
This all came driven home to me this week when my friend's husband died on Monday in the NH. When he went in he was not near this point but something changed quickly..Were it not that some of her family are not able to be notified yet she would not have the time to put all this together...and it got me to thinking about this....I have not selected a facility yet but I am thinking about the who would be what, readings etc...we know not the hour....
Hi Angel, I'm a geriatrician and former hospice director. What you are going through is difficult for everyone. Sounds like you are doing an incredibly admirable and caring job. Hospice can be confusing but the most important thing is that you remember that hospice is a service to you, it should not dictate anything but simply help you achieve your goals for your husband. You get to tell them what goals you want them to help you achieve. Not the other way around.
It is often not clear (initially) when someone takes a turn for the worse if it is a sign of the underlying disease (Alzheimer's) progressing in an irreversible way or if there is a reversible factor (depression, medication side effects, infection etc). Sounds like after a hospitalization that anything easily reversible should have been detected and treated. Between Decadron, (a steroid), Megace and Remeron, there is nothing magical about any one of them. They all cause weight gain (some fat, some muscle) with varying side effects. If you have any questions, let me know.
It's possible for the nurse and the social worker to both be right. Even if life expectancy is measured in months and not days, it still may be appropriate to plan ahead. Generally speaking, health care providers are really bad at telling the future. I've given up. I tell people to live each day to enjoy it. I have had one patient go without food or drink for a month. I had a patient who would eat twice to three times a week for over a year. There is nothing wrong with encouraging someone to eat, just take it slow and steadily especially if he enjoys it.
By the way, do you feel that hospice is meeting your goals? Does he seem comfortable to you?
I appreciate what everyone writes here because it helps me understand my patients and families better. I tell my medical students/residents/fellows to check this site out often to see what families are really thinking.
Thank you for your excellent advice Dr. Uy. I also read your most recent blog and plan to read through your archives.
Angel, please read Dr. Uy's advice and his most recent blog on Hospice. http://thegeriatrician.blogspot.com/ If you feel your husband still has pneumonia, you CAN have testing and treatment, even while on Hospice.
Wishing you comfort as you make these hard choices ((hugs))
My husband seems comfortable today he ate is breakfast. Thank God. I am not totally happy with Hospice...especially not with the HHA, but I guess any help is help. There is no diarrhea....there were several BM's a day for the last week and now it's down to one...Maybe some of his meds are causing side effects. I will read Dr. Uy's blog. Thanks for all the comments