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My mil (86) is in nursing care since April and not doing well. She went from independent living in Nov of last year to two hospital stays and a rapid decline. Her last hospitalization in Feb she was rushed to ER as they thought she was having a stroke. We were with her and fully expected her to pass that night she was in such bad shape. She didn't and they discovered the next day she was actually having multiple seizures. We suspect she'd been having them frequently.


She is now bed bound, fully incontinent (has been since December). She is on about 8 medications, including three to prevent the seizures (others are for high blood pressure and other issues). She was recently evaluated for dementia as she has many signs including hallucinations and they suspect several forms. She is losing the ability to speak.


Today my husband went to visit her and said she said hello to him, but she was doing very poorly. They are now assessing her for a UTI and will treat with antibiotics. This is the 4th UTI she has had in as many months. In fact, she's had several infections.


My MIL is in a very good facility and self paying. One of the staff called my husband after the psych eval and he told her that he knew his mom would not improve and he did not want to try to fix anything else with more meds, but now he seems to think they'll treat the UTI and she will improve. Perhaps she will, but for what? To lie in a bed? The only thing keeping her alive is all of the medications.


At what point should hospice be considered? We have been through 10 years of watching slow declines in parents. My mother ended up on hospice with lewy-body and lasted 7 months in nursing, but she had no other problems and no medications - she also never wanted to end up in nursing (my grandmother lasted 7 years in nursing with dementia) - she wanted an assisted death - so I had some peace when she did go. My fil was sick for years on numerous medications and lingered in the hospital for five months. My husband was diagnosed a year ago at 59 with a rare illness for which he is getting treatment and this is taking a toll.


If it were my mom I would switch her to hospice now. I'm a bit surprised my husband wants to give his mother more medication given her state. I feel he is now in denial about next steps. To say I am weary that this has taken over our lives so fully is an understatement. The moving and care of my mil (she neglected many, many things business-wise we have also had to deal with) has been three very long years, following the seven with my mother and fil.


It is my husband's decision what happens next, but I find myself very angry that this is continuing. I know it is out of my hands on a spiritual level, but how can someone so ill keep holding on?

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Ask him to allow Hospice to evaluate her. I don't think they would stop her seizure medication. There are people who get resistant to antibiotics and UTIs are the norm. Once she is evaluated then u and husband can talk about where to go from there. At least u have the info.
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orlando101 Jun 2019
Thank you. That's good to know about the seizure medication. It would seem cruel to me to let someone have a seizure. Without meds her blood pressure also spikes very, very high. It's all very complicated. I will suggest it, but I wish the facility would and I feel they should. My husband is realistic about the situation, but I believe is hoping, she just "goes". He had to watch his father for three days in hospice, without medications or water even and it was very difficult.
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The time to stop meds and shift to hospice care is a pretty individual one. What are the wishes of your MIL? Seems to me like she has enough serious issues to warrant a hospice evaluation.

If it were me, I would want my loved one to be comfortable, not unnaturally prolonging their life with just about zero quality left to it.
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orlando101 Jun 2019
Thanks you. My mil can no longer make a decision like that. Her ability to comprehend things and communicate is extremely limited. I agree about "quality of life". All of the people in the nursing home are not at all "living". They lie in bed or are placed in a wheelchair and sleep there. Then they eat, are bathed, changed and sleep. It's simply an existence. I just wish the facility would suggest hospice. I hate to be so cynical, but they seem to exist to profit from keeping people alive who shouldn't be. I've just been through this too many times now.
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I'm sorry for you and your husband. I would talk to the doctor and say what needs to be said. But like JoAnn said, have hospice evaluate. If your mother is under hospice care, it will be another layer of comfort for both you and your mother -- another set of eyes to help you make decisions. Best to you.
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orlando101 Jun 2019
Thank you. We are going to do this next week. When I told my husband that she would still be treated for her seizures and uti and not go straight to palliative care, we both felt like it was definitely the next best step.
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Self pay, I am horrified that her facility hasn't brought up hospice, unfortunately it is probably about the money.
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Bootsiesmom Jun 2019
OMG. I hadn't thought of that, but could be.
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I think it's our responsibility as caretakers who are taking care of everything to get a hospice evaluation. Seems to me you're there. I waited too long to do this for my husband (glioblastoma end stages). In the end I wished I had done it sooner. There was no quality of life, and no chance for one. He died less than a week after hospice evaluation.
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I think the best advice is to ask your husband to get the Hospice evaluation for information purposes. He still has the option to implement it or not. If he is hoping that she just "goes", that is still what happens on Hospice. It’s not a ‘death’ decision.
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Hospice needs to eval as there are criteria for Medicare part A. Call and talk to them.
They have to have 6 months or less and they have to meet FAST scale criteria. We took our mom off all meds the last month she was in hospice. All meds means only what hospice gives. Ours was step approach. Morphine not started until very few last days.

Hydrocodone was used for a month and a half roughly prior. Oral solution. Our experience with hospice was a godsend.
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orlando101 Jun 2019
My brother made the decision to put my mom with lewy-body on hospice at the recommendation of her physician. It was an enormous help.
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I can see not treating her for cancer, heart surgery but a UTI is painful and that would be cruel not to treat something simply like that. Since you don’t have to take of her, it shouldn’t matter to you.
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Isthisrealyreal Jun 2019
No, suetillman UTI is not typically painful for the elderly, it's makes then irrational, angry, violent, delusional and difficult to deal with. It is far more painful to the people around them than it is for them.

Hospice treats UTI because they can't help a patient that is behaving psychotic.
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Wow, I hope my children aren’t as cold hearted as some of you are when I get old.
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Countrymouse Jun 2019
I think ten years + of multiple caregiving burdens might have made me a little frosty, too. When someone's got a lot to get off her chest, do make allowances.
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Orlando, what's causing the seizures? When you say you both suspected she'd been having them frequently, why and how long for?

The thing is, having been independent six months ago, she's dropped off a cliff and it's only two months in the NH so far. Straight to palliative care might be a little premature, but it very much depends on the complete diagnostic picture. Nothing to see on the scans?
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orlando101 Jun 2019
No one can tell us what is causing the seizures. She had a spinal tap at the hospital with no conclusive results. I think much of her decline stems from lasting effects of radiation therapy she had many years ago for colon cancer. She had a procedure about a year ago to help with incontinence and we were told that there was damage and that she was fully incontinent. This took a toll on her. MRIs have shown signs of dementia. Her poor body just seems to be battling a lot. I really wish we knew what the cause is. My husband wants to do the hospice evaluation and go from there. No I do not believe she is ready for just palliative care either. I think, emotionally, having been through this several times, both my husband and I are really overwhelmed. She's also our last parent.
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My father is on hospice in a nursing home. The one thing that is allowed to be treated is a UTI with antibiotics. Hospice utilizes comfort care and does not allow patients to suffer. My father has been on hospice for 5 months now and may possibly come off hospice if he continues to maintain his level of health. He is not on any life sustaining medications and it was recommended a year ago he get a pacemaker. He is still doing fairly well healthwise, but his dementia is slowly robbing him of the ability to comprehend his world around him.
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New Question - I may need to start a new thread. It appears that the company that operates the nursing home where my mil is in -also- has an arm that provides hospice care. I am wondering why no one has suggested this as an option (not to go straight to palliative care) but to have a hospice evaluation given my mil's condition.

After my husband mentioned a week ago to staff that his mom was telling stories such as one that someone had been murdered in her room (she was not disturbed by this and apparently it isn't totally uncommon ideation), they ordered a "psych evaluation". We already knew she had dementia, but afterward they called and discussed with my husband that my mil most likely had several types of dementia. They discussed her condition, her rapid decline, meds and the understanding that she was declining even more. My husband expressed that he did not want to keep giving her more and more medication and that he wanted her comfortable and well-cared for above all else.

Not once was a hospice eval brought up. Given that my mil is totally self pay, I am growing more uncomfortable that this is the reason.

Would it be best for us to get a hospice evaluation independently and not discuss yet with them?
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Isthisrealyreal Jun 2019
I would.
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Orlando, I know you state clearly that the colon cancer was many years ago, but how many? Have they ruled out brain metastases?

I wouldn't waste a second on worrying about why nobody has suggested a hospice evaluation, and I certainly wouldn't try to arrange it "covertly," so to speak. Just request it. An evaluation is just that, and commits your husband to nothing.

In spite of some of the things we read, it is not true that hospice or palliative care will finish anyone off quicker than they were going to go anyway. These pathways prioritise the person's own sense of wellbeing above all other factors, instead of sacrificing it to ever-fainter hopes of recovery or of prolonging life; but there's no reason they should be less than satisfactorily profitable for the NH. I should put the idea of their milking her through onerous, futile treatment out of your head, for your own peace of mind.
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orlando101 Jun 2019
Thanks so much. That's great advise. I already decided to just calm down about this my husband will talk to them about the eval. We've been in such "react" mode for so long, that my stress response is always on.

The cancer was 26 years ago - 25 of that she was fairly healthy so very lucky. The main thing is that she has had a lot of infections and a uti four years ago that put her in the hospital for three weeks and moved to her eye. In Nov she had pan colitis and everything went down hill from there.
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On a spiritual level continue to pray for your husband. MIL is where she is so pray for her comfort. At her age and all these meds are not good. Us "guys" need the loving approach from our wives, whether we admit it or not. Just you sharing on this forum shows you are still the loving daughter in law and wife.
Both of you get educated on hospice care. You care speak with a live person. Hospice has had a negative reputation for generations. But it's for providing the quality of care needed to keep our loved ones comfortable and best quality of life possible until the time.
Blessings
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orlando101 Jun 2019
Thanks so much. Just posting here and hearing the advise has been so helpful. Yes, I truly feel I am here to support my husband in his decisions at this point. I had to make decisions for my mom as she grew more ill and he was very much there for me. I am grateful that we have each other to lean on, especially since we have no family close by at all. To see my mil decline so rapidly is hard (and I know all of the meds don't help), but it is very hard for my husband to see. He is being a very good son and I would want nothing else.
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Orlando101, you have been through it lady. Great big HUG!
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If it was me...my mother I would treat the UTI because it is painful. Then I would have hospice evaluation. I would stop all other meds. Here is why: your MIL is 86 and is going down hill and the fact that she has had a high number of infections that might imply that her immune system is weak. Why put someone through so much for so little? This is just my opinion!

However, it is your hubby's decision and he is the one who has to live with his decision! I agree that he should have his mom evaluated by hospice and see what they say. There is no harm in that and besides it could give him more information that could help him make a more inform decision.

The hospital is probably not suggesting hospice because your MIL is self-paid. Sorry to say, a hospital will tx pts different to whether the pt has insurance or not. Sad but true! I really hope that is not the case!

Sorry that you are going through a really hard time!


Hugs!!
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orlando101 Jun 2019
Thanks. My husband is going to have hospice evaluate. This has all happened fairly quickly (from independent living to assisted living to nursing home, with two hospital and rehab stays in between) so I actually think it is the right time to initiate this.

To clarify, my mil has very good health insurance, so no issue there. She is self pay at the nursing home - would not qualify for medicaid, like many other residents.
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Thank you so much for everyone's help. It was truly invaluable. My husband is contacting Hospice. They are treating my mil for the uti infection, but he said today that she is clearly declining even more. May she have comfort and peace.
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busymom Jun 2019
I pray that you and your husband will have comfort and peace. These are difficult decisions, but I have used hospice for both of my parents and am now being blessed by hospice care for my 92 year old aunt with Alzheimer’s and heart issues. Having the pain management in place for the final days was huge for both my parents. Mom had Parkinson’s disease and contracted aspirated pneumonia which finally enabled me to get a doctor to order hospice for her. She passed rather peacefully about 5 days after her being accepted by hospice. My dad was on hospice for nearly 3 years due to prostate cancer that spread to the bone and kidney. His family physician stated that it would be a “speedy demise,” but certainly wasn’t. Having hospice on board provided medications (some very expensive that at the appropriate time we did discontinue), they had aides that came to help Dad bathe, a chaplain that became a sweet friend to my dad, a social worker, and extra nursing care input when needed. These were the people who helped me walk through the “unchartered territory” for decisions I had to make for my dad. We did not do feeding tubes or even oxygen at the end of life stages. Dad also died fairly peacefully with little pain. Both of my parents were ready for their heavenly home and both had told me that the did not want anything more than comfort measures in their final days.
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Contact Hospice.
The Nurse that does the evaluation to determine if she is Hospice eligible will give you a good idea what medications can be discontinued.
Many medications Hospice can provide. If there are medications that you do not feel should be discontinued and Hospice does not pay for them you can private pay for them.
Hospice will treat UTI's Hospice will treat other infections. Hospice will not treat other things but you need to discuss that with Hospice.
As far as I am concerned you can not call Hospice soon enough . If the person does not qualify at that point they may in a month or two maybe less, maybe more you can never tell what will happen.
But the extra care that you get from Hospice is well worth the phone call it takes.
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pepperpatti55 Jun 2019
yes - i noticed that once hospice gets involved the insurance doesnt pay for medications - even life sustaining medications. The insurance will pay to kill you, but not to sustain your life.
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This sounds a lot like my mom's decline went. When hospice came on board it was such a relief to my mom and me, her only caregiver. She was bedridden in my home. The hospice kept her comfortable and did treat UTI's as this was part of keeping her comfortable. Mom was on hospice 7 months before she finally found her peace 3 years ago. The hospice people were wonderful. I do miss my mom a lot but am glad she is no longer suffering.
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It can take two to three weeks to die without food and water, and hospice keeps them drugged during that process. Let's not mince words: Withdrawing medications, food and water is pulling the plug. They call it a "peaceful death" but there is nothing peaceful about dying. It's a very fearsome, often slow process. Life is suffering. As for hospice, if your loved one is still at home the care still falls on the caregiver. They can offer an home aide a few times a week for about a hour at most. If in the nursing home hospice will be more generous with narcotics until they pass. but it can still be a slow process. Note hospice will NOT authorize or pay for feeding tubes. If you go that route you must revoke hospice so Medicare will pay for it (or Medicaid) then after the surgery you can put them BACK on hospice.

Withdrawing medications, food and water to someone who is totally dependent for survival from others reminds me of the Karen Ann Quinlan case--the girl became brain dead after abusing drugs and alcohol, and was kept alive with feeding tube. The family argued over stopping tube feeds vs keeping her fed. It became a supreme court case and the governor of Florida signed the order to allow the husband withdraw tube feedings and it took quite a while for her to die. To me this is someone similar to end-stages of Alzheimer's and you will have to tangle with that issue yourself what is right or wrong.

For myself with my mom at the very end stage of Alzheimer's and she is nearly 90--I still manage to feed her but it takes over an hour, and keeping her hydrated is in itself a full time job. I probably would go for a feeding tube and revoke her hospice because I personally cannot stand to see her slowly die of dehydration because she is my mom and I love her dearly. But the feeding tube is a LAST resort only. Now if my mom is continually suffering that is a different story..well overall yes her care is very very hard and I take it a day at a time, but overall she's not suffering. So I'm not pulling the plug on her. But if she goes unconscious and is not suffering, I will let her go.

Mum has been on hospice for nearly a year. But I do ALL of her care. No nursing home for her. Not ever. It's hard but I also keep her walking with her walker. It's a bear getting her out of bed but once up she's okay.. If I did not get out out of bed she would be bedridden, and it only takes a day of staying in bed to do that. This often happens to hospitalized patients with severe Alzheimer's. They end up discharged and lost their ability to get out of bed because nurses keep them in bed due to fall policies. In bed they don't fall, so the nurse is safe from hospital repercussions.
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Countrymouse Jun 2019
Generally, the withdrawal of food and water should be like pulling the plug on an appliance which is broken. There is no point in putting nutrition into a person whose major organs - liver, kidneys, gut - are failing.

I agree that there are cases in which the plug is pulled on appliances which are faulty and beyond repair rather than definitively broken as such. They are hard cases which I personally feel outsiders should hesitate to comment on. More recently than the very famous one you mention, a dispute between a man's parents and his wife also went the judicial distance in France (I think it was): I'd have to check what the decision was.

I've checked - he's still going, but his case has now been referred to a UN Committee on the Rights of Persons with Disabilities. Vincent Lambert is his name, if you're interested; and there is a discussion of his case and the issues at https://vip.politicsmeanspolitics.com/2019/05/24/withdrawing-life-support-only-one-persons-view-matters/

The article is very interesting but its conclusion is feeble. In the absence of certainty about the person's own wishes, what then?

I have digressed horribly. I just wanted to say: before you subject your mother to a feeding tube, please be sure that her body is capable of handling it. May you both be spared this and similar impossible decisions.
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UTI's are pretty terrible, so yes, Hospice would totally keep treating that because that falls within comfort care. I do think it would be good to at least explore Hospice options with your husband, as they really provide support for the family as well. Being on Hospice doesn't mean that your mil will have to go off all her meds and just waste away, sometimes patients improve and no longer qualify for Hospice. It's really a way to help families care for their loved ones with some dignity and comfort, but it can still be a long process and it's not like "pulling the plug", but they can definitely help create a new care plan for your mil that is maybe kinder and gentler and focused on making her comfortable rather than just existing.
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my2cents Jun 2019
I'm not so sure treating UTI is being done via all Hospice care. My friends' mother went to hospice and the first thing they did was stop her daily meds and antibiotics. She was offered morphine and ativan as needed. She was fed when she woke and asked for food or if family did not request the drugs for a long enough period of time to allow her to rouse and feed her. One child believes in withholding med/food/water as a means to end what he perceives as poor quality life. Another child believes in offering all of these things to help mom stay alive because mom has made it clear this is what she wants.

The doctors said she would not recover from lastest issue with copd and other medical problems, however the daughter decided to stay in the room with her and only ask for the pain meds if she knew her mom was in pain. She brought the regular meds from home and put her mom back on them and reduced pains med requests.

Once her mom was lucid again, she was back to her old self. She was able to return to her home with hired help for daily chores. Yes, she has copd/other issues and it will eventually take her life, but she is adamant that she wants to live as long as possible.

Maybe it is easier to make these decisions for someone else if you know exactly how they feel about it. When you don't know, you will probably make the decision based on what you would request for your own life
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Hospice is for people with a life expectancy of less than 6 months and some conditions would be treated, to make the person comfortable. If she is still mentally competent, you may want to discuss this with her. Some people know when they are ready to die, others want to do everything possible to live.
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My stepfather was92, moderate Alzheimer’s when he developed a UTI( my mother was caring for him. His quack of a dr neglected to notice his prostate was so enlarged he couldn’t urinate and my mother was not aware he was not going) . He went from walking one day to hospital and semi conscious the next. My mother refused to stop treatment so it took him 3 weeks until she finally agreed to just do comfort care. He passed away the next day.

My father (85) was up and walking, developed an infection and declined care. He lived 2 1/2 days. My father was imo the easier of the two deaths for all involved.

When someone hasn’t come to grips with a loved ones irreversible illness, it’s hard to let them go. After 7 years my mother still had refused to accept my stepfather had Alzheimer’s, refused to accept he was dying ( irrationally so, claiming he had a good 10 years left) so imo put him and the entire family thru torture. But with her noone, including the entire care team could convince her to do what he would have wanted. I’d see if you can get a dr to discuss his mother with your husband. Maybe he wrongly views comfort care as assisted suicide?
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You both could Talk to the Social Worker where your MIL Is, They will Help you get in Touch with Hospice. However, If you hubby will Not Comply, It is of no Use and the Only you can do right Now...Is watch Mom quietly Die...
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I wish people would become more informed about hospice services and the wishes of your loved ones.
And dehydration is a very peaceful way to die. Feeding tubes are not used anymore when someone is dying because it overloads the system and makes the dying process painful.
Do you really want to drag out your loved one’s dying process and cause them more discomfort?
When my beloved, late partner was dying of cancer they made me promise I would not let them be in pain and prolong their life because I wanted them around so when the hospice nurse very honestly asked me can I give my partner morphine every 15 minutes until they died by the end of the night or it could be dragged out another week or two.)
I opted to do the morphine every 15 minutes(actually a relative stepped in). I could never let a loved linger because of my inability to let them go😢
Please everyone, talk with your loved ones and really think, what is the kindest thing to do??? Dying with dignity is not the worst thing....

Love to you all!
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My dad 94, has been under hospice care for two years. He gets a drug for hallucinations he has almost constantly now and treatment for utis when needed. Hospice means caring for someone at the end of their life. It doesn't mean letting them suffer until they die!

My dad is slowly slipping away with heart failure, can no longer walk, bedridden mostly except wheelchair to meals at the care center. He also is no longer lucid, the hallucinations have taken over his mind, and he rambles about events that never took place but seem so real to him. He no longer realizes mom and one of my brothers are dead and gone many years ago, and wonders why they don't visit.

I think our local hospice is doing a great job making my dad's last weeks and months comfortable ones.
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You don't get to decide, there are guidelines now for Hospice. The person has to be evaluated; bedridden and incontinent are not enough to be eligible for Hospice.

My DH was denied until 3 days before he passed away. I told the nurses that God would see that DH got Hospice when needed. On Monday he was ineligible, they came on Wednesday and that was the first day he was unable to stand. I still don't know why they came on Wednesday, but I will be forever thankful as his last 3 days went so much easier with assistance.

If you deny the medications, you can be held responsible. I had my father sign a living will and had it notarized, basically stating that he didn't want to be kept alive artificially.
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A doctor ordered hospice for us.
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Knowledge is power. Why not get an evaluation from hospice? Then, there is something concrete for your husband to consider. I was in a situation with my mom much like you. I sought a hospice evaluation for her because her condition had deteriorated to the point that I believed that her care in the nursing home wouldn't be enough and would contribute to her decline. Hospice would supplement and therefore improve her one-on-one care because the nursing home paradigm doesn't provide enough for those who need the care mom did. It was a difficult choice but I knew it was the right one. If somehow she improved with added care, she could "graduate" hospice, but that didn't happen. However, I have the comfort of knowing that she was lovingly cared for (which the nursing home couldn't/wouldn't have done alone) and she never developed a bedsore. Her last three and a half months were made much more tolerable.
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This is my experience with hospice for my mother in 2010 and my father in 2014. They worked with my parent's doctor regarding the medications. For the most part, both my parents kept their medication plans. However, hospice would only pay for certain ones.
It is my understanding that hospice cannot force anyone to discontinue any medications; they just will not pay for some. Since both my parents passed on within two weeks of acquiring their services, I do not think we had needed to get the RX filled that hospice would not pay for.
Their approach was that they were there to assist us and by calling them, it did not mean that my parents were going to pass on right away. They gave us a kit of medications to be kept in the refrigerator and went over instructions on each one. (I took notes.) We called them if we had questions. My mother passed on in the hospital and my father, in his house. When he passed, we called hospice and they came and helped with having his body removed and procedures to take.
Hospice was WONDERFUL. It was so helpful to have a person to guide you that is not emotionally involved and is thinking logically.
My opinion is to call hospice and see if you and your husband can work with them.
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