About a week and a half ago, my mother in law had a massive stroke. This is my life lately. First my mother, then my father's issues, and now my mother in law. My mother in law (MIL) was sent Hospice and it was determined that she will never overcome this. It's not been 2 weeks yet. My wife is insisting on feeding and hydrating her mother repeatedly. My MIL can't talk, can't use half of her body, and can't indicate yes or no. My wife thinks she can interpret her mother's eye movements and mouth movements as a yes or no, but there's no indication if any of these motions mean anything. My MIL's living will stated that she did not wand a feeding tube in this situation, so that's one of the reasons she was send to Hospice. But a few days later, my MIL starting being able to swallow small tablespoon sizes of water and eat ice chips. I'm just curious if anyone else in here has had this happed to their loved one. I love my MIL. And this is very unfortunate that this has happened and I feel very bad for my MIL and especially my wife. I asked her today if she had anything in mind if and when her mother's situation didn't improve. Being in Hospice in our house, we are feeding her, but not a lot, hydrating her, and also keeping her clean when she has bowel movements. The Hospice nurses bathe her weekly. My wife gets very defensive when I ask her what her plan is. She wants to keep giving her mother food and hydrate her. I agree that she should continue to do that. I just don't know if the food will cause her mother more trauma. The reason I am concerned about this is that the medical staff that we have spoken to have said that it doesn't matter if you feed her or not, that the outcome will be the same, and they also said that feeding her will cause discomfort as the body doesn't know what to do with the food. And they also said that depriving her of food was cruel. I feel like this will play itself out over time, but I worry that my MIL is suffering and we can't tell because she can't talk, and I also worry that my wife is agonizing over watching her mother go through this. She has said that she feels obligated to continue feeding and hydrating her mother because otherwise she feels like she's killing her mother and she's also said that she wished that her mother would be spared from this tragedy by passing soon in her sleep. It's a tough situation.
My dad died in his sleep and my mother was angry at him for years because she didn’t get to tell him goodbye.
Grief isn’t rational
I think that she and I caring for her now is the best she can get. Her alternatives are rehab and /or long term care.
We know that pre stroke she would never want to be in this position. But can the stroke change who you are? If she were to "come out of this" and recover, she'll need a LOT of people working with her to recover. Here's another issue: As her family weighs in and offers their opinion, they are no where to be found. Very typical. Her son isn't here helping, neither are his kids, neither are her sisters or their kids. It's just her daughter and me. Her daughter in law will stop by and spend some time with her, but won't do anything else.
This puts the real pressure on my wife. I'm doing all I can to help her. I can sustain this for a long time. But we aren't retired and need to live our own lives again. And that's what my MIL would want. Not for us to be stopping our lives for months or years to care for her.
The alternative is long term care where she'll be alone. So, this is the tough decision. LTC or Hospice?
My wife will ultimately decide here. And I'll support her.
It's important now and I am certain hospice and the docs have warned you that feeding if she cannot speak, cannot swallow well will lead to aspiration of food or fluid into the lung and a more early death.
This is all going "well" as it can go in these circumstances. MIL has had a devastating stroke. She is very unlikely to survive that. You know this. Somewhere within your wife recognizes AT LEAST the possibility of this. Let her ALONE unless you can bring yourself to support her completely. If she says :
"Look, mom communicated with her eyes" tell her "You know your mom from day one. If you think so then I would bet your are right".
This is your wife's and her moms. The part of it that is yours is supporting them both to the best of your ability. Unless you are trained to know, or just DO know everything, your guess is at present as good as wife's.
I love your caring, and clearly you are all dealing with more than this, when this alone would be so heartbreaking and devastating, but I stand solidly with wife here. And if you can support her, with you as well.
I am so very sorry for all that has happened here. So very sorry.
I would never deprive someone of food if they are able to take it on their own. But I would never force food through artificial means if the person is not able to take it. To me THAT is the "cruelty". My own POLST and advance directive have LONG forbidden any feedings by another person, NG tube feeding, or PEG. I am an RN. After a long life of seeing the results, that is my decision for myself. I cannot make that decision for others.
My late husband had a massive stroke back in 1996, and was first in ICU for about a week or so, then moved to the stroke floor of the hospital for over a week, and then on to a rehab center for several more weeks.
And he too could not initially swallow and had a feeding tube placed which they removed about a week later as he began to be able to swallow again.
My husband couldn't talk, and was paralyzed on his right side, but after much therapy improved some, though was left permanently disabled.
So the fact that your MIL was sent home so soon I guess was basically to die huh, and that her doctors don't give her much hope of surviving? That is a tough situation.
But also know that your MIL can go to the hospice home as well where she will be taken care of until she dies and where your wife can just go visit her and not have to be hands on with her care. Medicare covers that 100% if your MIL dies within the week of being there, otherwise you have to pay out of pocket for her to remain there.
Your wife should do whatever she feels she needs to now for her mom, and giving her mom a few sips of water and a little food isn't going to hurt anything right now. But as your MIL starts her actual dying process she won't want any food or drink and will refuse it, as the digestive system is the first to shut down.
So just be there to support your wife through this very difficult time and make sure that she's taking good care of herself through it all as well.
The medical team assessed her abilities and based on her directive to not have a feeding tube, along with this history, the family decided to let her go to hospice. She basically is incapable of doing the rehab that your husband was able to do. She was unable to do the rehab that she needed to do, when her mind was working. She was unable to medicate herself, unable to eat properly, and unable to even walk 5 feet without having to sit down and take a breath. And through all of this, I'm leaving out all of her other medical issues. Depression, gastroparesis, previous mini strokes, and a torn rotator cuff, all of which she didn't want further treatment for. So, lets say that she could go to rehab and be able to perform the functions that they require. She was in too much pain prior to the stroke and had no muscle tone. The medical team and the family didn't think she was capable of recovery because it was too involved and she was too weak. In comparison, because I obviously don't know your husband, if he was eating properly, not insulin dependent, had his mind still working, and was able to fight through it and recover to some sort of good quality of life for awhile, then it would make perfect sense to pursue rehab. Seeing her mother smile and want to eat every day makes the decision a struggle for my wife, but without stroke recovery, I'm to understand that the process that one goes through to relearn how to talk and understand things, is not happening, and therefor we don't know if she can understand anything we are saying as she can't even indicate a yes or no. But the knowledge that the body will shut down at some point is something we know and she's not taking in enough calories to live very long at this rate. My wife daily wishes that when she waked up, that her mother went to Jesus in her sleep. My wife doesn't know what to do, but who can say? No one knows for sure. I know that with my mother, she broke her hip and recovered from the surgery, but her dementia was exacerbated by the surgery and she mentally never recovered from that. Her body eventually shut down, and knowing what I know now, I would have never had her hip replaced or put her through was I saw her go through in the last 5 months of her life. It was all rehab and forcing to get up and move around. She eventually gave up. Looking back, I wish the last 5 months of her life were peaceful and that the rehab just made things worse. And in my MIL's situation, I see similarities, that she has partially recovered from the stroke in that her brain didn't swell as the medical team thought it would. She was able to swallow and eat and not need the feeding tube. But it's unclear if rehab at this point would prolong this and put her through something that would not be good for anyone, or if by some miracle she could recover. Also, she has a son with children who are no longer a part of her life. She didn't do anything to him. It's just us.
I don't think that you or your wife, or the medical professionals are putting your m-i-l through anything. It's her own body and brain that are keeping her alive.
Feeding your m-i-l a small amount of liquid and yogurt wouldn't be enough to keep her alive if her body were really ready to shut down. Also, while I don't think it's right to force a person to eat and drink when they are at end of life, 1. your wife didn't force her mother to eat, your m-i-l took the food offered and 2. there was no real way of knowing whether your m-i-l was at end of life or not.
So, please be reassured that none of your m-i-l's suffering is due to anything that you and your wife are doing. You are just taking care of her and providing comfort. There are no heroic measures being taken here, from what you've told us. This development is just unfortunate.
When my mum was in hospital following a major stroke, there was a lady in the bed opposite who moaned and cried out whenever her daughter fed her, or cleaned her, or brushed her hair. I prayed that if Mum had another stroke that it would take her, so that she never suffered the way that poor woman and her daughter suffered.
My opinion on whether to take care of your m-i-l in your home or a suitable facility, if she improves and thrives, is that you and your wife need your own lives, which would be difficult even if you had carers looking after your m-i-l in your own home. If she were placed in a facility, your wife could visit her mum every day if she wanted, but still come back to her home as her haven. And I think that you will both need a haven if this current situation continues for any length of time.
I am sorry for you all, for what you are going through. I wish your m-i-l peace and for you and your wife to find both acceptance and fortitude.
Listen to what her Doctors say, they know what is possible. Your wife cannot blame herself for any of this tragedy. She is not "killing her Mother" and she did not cause her Mom's stroke. She is feeling anticipatory grief, the sorrow ahead of time so to speak. She is feeling deep compassion for her Mother to gently leave this earth in her sleep.
Many forum members have had this situation happen and will give experienced advice. My husband died of Stage 4 cancer, and we were told he had one year to live. It was the most stressful time in my life and it was brutal to watch it happen. I would think a stroke is just as cruel.
You may see some amazing bravery by both your wife and her Mother. Your job is to be your wife's rock, like I was my husband's. It was not easy, but I did what I knew I had to do. Stay strong, get plenty of rest and take it one day at a time.
Prayers and strong energy sent your way tonight.
While we are waiting for PT and OT, I went to Youtube and looked up therapy for stroke victims. So, I work twice daily with her to control her mouth and tongue, use her arms and legs, and build her strength, as much as she wants to do and all within the confines of her bed. My wife and I keep feeding her, giving her water, and now some meds, as directed by her physicians. Is this a rally? Is this recovery? But, like I said, NO KNOWS ANYTHING. All the doctors said she'd be dead weeks ago. The family didn't have much hope. Her immediate family didn't hold out much hope. Basically her daughter is the one fighting for her, and I'm just helping her.
And on we go, we don't know how far or for how long, but we're going, no matter what.
At one point, she developed horrendous bladder bleeding. She lived in excruciating pain screaming through the days and nights for hours and hours. The bleeding was from the necessary blood thinners that she needed to stop another stroke. The doctors were able to put her on a coagulant and drain her bladder, but the insidious thing about blood clots in the bladder is that pain killers don't work too well on muscle spasms, so she wasn't given pain killers. The medical teams that we were given were very good at what they do. I've read comments in here questioning the decisions that were made. The fact is that she had both Ischemic and Hemorrhagic stoke with a brain bleed and an aneurysm. The fact that she lived at all, after this event, was a miracle.
This blood clot event came after she was admitted back to the hospital because she was off blood thinners and her pulse, blood pressure, and breathing became violent, high, and caused convulsions.
This gave her family 6 more months with her, to grieve and to just be with her. During the 6 months that we had with her after her stroke, we face timed everyone in the family and whatever friends she had called, stopped by, and reached out however they could.
I viewed this last few months as a gift. Although it was tough, it was messy, it was hard, and it was painful, it was a blessing. She had the last 6 months of her life surrounded by her family 24/7 until her last breath.
I just don't think it gets any better than that considering her situation. I have one parent left who is living a life post several mini-strokes. And now we help, once again.......
I am deeply sorry for the loss of your beloved mother in law, but you can take heart knowing that you, your wife and likely even your MIL saw the gifts in the added time given, despite the awful hardships. And she laughed.
I read through your entire thread, and to me it felt that you completely supported your wife and mother in law with love, understanding and compassion. It was natural for you to have questions given the situation; and this should be a safe place to ask them without judgment, tho’ sadly that may not always be the case.
I wish you and your wife as easy a time as possible through this period of mourning. Be good to yourselves. I know how it feels to walk the path of caregiving pretty much unaccompanied, so keep gentle hold of your beloved wife’s hand as you both move through this process.
May G-D Bless you.
Warmly,
JB