Looking for real talk from those that have cared for a terminally ill parent

[pearlsngems]

A few more considerations:

Skin breakdown. As the person loses weight, as their nutritional status declines as they stop wanting food and drink, their tissues may begin to break down. My mother's skin broke down on both heels and her sacrum.

Mental changes can occur. Mom was swearing and spitting at the caregiver and the hospice nurse (she had dementia but it worsened dramatically during her final few months. It is not easy to deal with all this even without small children around.

Location of the hospital bed. We had to put the hospital bed in Mom's living room so she could watch TV and so the caregiver could keep an eye on her, keep her company. Would your MIL be in a spare room, isolated, or in your living room / family room, where she could interact with family? How would this affect your family life? How would it be for her to be in a bedroom, alone?

IV Pain meds? Are you expecting she will need pain meds administered through IV? Could she have that in your home? (My mother didn't need them so I don't know how that would work.)

 

[TooPatient]

I haven't been here personally, but my grandmother had hospice at home. Our entire family appreciated this and I know she was happiest at home (even in the tea room off the living room). It was exhausting on everyone but it was a far better experience than my grandfather's mother who was in a hospice facility. That was stressful and hard in other ways and something I know he and my grandmother regretted. My grandmother's mother had hospice in the home of one of her daughters. Again, it was exhausting and very difficult but I also know her daughter wouldn't change it if she had to do it again. Those final days with her, even with the mental changes, were precious moments that she still talks about as making all of the stress of having her at home worth it.

Hang in there. You made the offer and are willing to make it happen if that is what she wants. See what she wants and go from there. It is a short term thing. No matter which option she wants to choose, know that these will be very difficult weeks. Prepare to take time out of work and school. Know that it is okay to take time to take care of yourself.

My grandmother was set up with a hospital bed, IV pain meds, and all of the other comforts of hospice. She wasn't lacking anything that way.

 

[rainydaze]

Everyone has posted such great insight and information - I just want to especially call out the advice to have a very open, plain talk with your DH about what both of you are willing and able to handle. Personal hygiene is a big one, you will likely find yourselves faced with needing to change bedpans, portable toilets, bathing her by hand, cleaning both her and bedding after accidents, changing catheter bags, etc. My mother needed support getting out of her hospital (hospice) bed to the portable toilet, needed help with her clothing, and getting cleaned up. In other words, someone needed to be with her during the entire process of going to the bathroom, and needed to be hands-on. You may also find she needs adult diapers. You will have to change those and clean her up during the change.

I also want to highlight the advice to consider where she will be comfortable staying. My mom did not want to be in her bedroom. That may be a concern for you considering you have a young family. If she wants to be in the living room where the tv and people are, your kids will be exposed to more of the nitty gritty and pain of this process.

One other thing I don't think I have seen mentioned is helping to keep her entertained and occupied. The more my mom deteriorated, the harder this became of course. She was too weak to hold books. Finding old tv shows and movies and setting them up on an iPad she could prop up on her blankets and easily control was really helpful. She was bed bound for a few weeks at the end, and you can imagine how that feels and what that entails. Being surrounded by your family may be a blessing as it occupies her mind, or it could be annoying to her as she is in the utmost pain and discomfort. My mom kept soothing music on nearly all the time as it was one of the few things she found gave her some peace. In this stage, anything and everything you can do for this person is what matters... your family's needs may take a back seat.

 

[Rfisher]

One last thought, and not looking for an answer from you at all.
Caring for your MIL in your home, you as the primary caregiver, has the very real possibility of being a catalyst for the following:
- Making amends/atonement/being at peace with your inner self concerning past history between yourself and your MIL/in laws.
- creating a stronger bond between you and your husband.

Unfortunately it also has the possibility of creating the direct opposite.

Please also be aware, before committing, just how much help you can expect from the rest of the family. You still have dates, dr's appointments and a life.

 

[AGBF]

I had cared for my father for quite a while before I hired someone to live in with us. By the time we called in hospice, however, we had already had someone living in. Frankly, I cannot imagine caring for my father at home with only the aid of hospice and I am not someone who was averse to cleaning up after him when I needed to do so. Once, before we hired his aid, he fell in the bathroom and was bleeding. (Skip over the next lines if you are squeamish.)

I cleaned up his feces from the floor and cleaned him up thoroughly on his nether parts as well as cleaning up the blood from his wounds before I called the paramedics. I did not want them to come and find him in a pile of feces and blood and to cart him off to the hospital a mess. Had time been of the essence, I would have gotten them there immediately, of course, but we were not talking about a heart attack or a stroke. My father kept saying, "Good job!" "Good job!" to me while I was cleaning him up.

And this was when he was in relatively good shape, just falling, not when he was dying. When he was dying he couldn't move and was in diapers and had bed sores despite the most wonderful care he received. It was his aid who washed him and who changed his diapers and who made sure his bed sores got the correct care and that he was moved as often as needed several times a time. Hospice is not there to do that.

I was there as well. At the end my father took ice cream from me when he wouldn't from his aid, whom he adored, which hurt his aid's feeling. I was a part of things, too. But without his aid I couldn't have cared for him at home.

When he passed away his aid and I did not immediately call the hospice nurse to pronounce him dead. I kissed and hugged my father. His aid and I cried together. We spent time with him alone and, privately, the aid washed him. When we felt ready we called hospice and the nurse came to pronounce him.

 

[Calliecake]

My MIL was at Hospice inpatient facility the final weeks of her life. Her care givers were wonderful. It didn’t feel like a medical facility. The rooms were beautiful with a large area in her room for family members to gather and stay. We took turns spending the night so she was never without family. There were usually 6 of us with her during the day and evening.

Her room was set up like a huge Master bedroom suite. There were French doors with beautiful views outside and a large private patio with furniture outside. If the weather was nice they would move the patient’s bed out to the patio if the patient wanted to be outdoors. My MIL was not conscious while she was there but we all knew she would have liked it. If she had a dog or cat they were welcome to stay there with her. They also had a large gathering room for people to go if they wanted to leave the room for a bit.

Honestly @StephanieLynn if there are places like this in your area it may be the best situation. My nieces and nephew had a hard time seeing her at the end. The end was hard on everyone emotionally and we were very relieved that there were people there to manage her pain and reassure us that she was comfortable. They let us stay with her as long as we wanted after she passed and didn’t call for them to take her until after we left.

 

[Calliecake]

Another thing I wanted to tell you is to please know not everyone handles these situations the same. People may tell you they will help but when it comes down to it, they may not.

 

[YadaYadaYada]

Hey all,

I just wanted to let you all know that I did read every post and wanted to thank all of you that shared your experiences. Just came to update quick but will respond to individual posts later.


She has decided to go back home and let her friends take care of her, they are employed through an agency and have been caring for her with her team of nurses. DH as well as most of the family doesn't feel this is best for her health BUT it is what she really wants. There was apparently a rather heated exchange yesterday between two of MIL's sisters because one sister does not want me taking care of her. It was rather shocking to hear this because I've never done anything to this person but she apparently has certain feelings yet is not an active caregiver and has not been present much at the hospital. Mind you she also upon seeing all the visitors MIL had Saturday made a comments about how she should have set up a table to hock some jewelry she sells. You know high class all the way there :roll

We did have a conversation with MIL and I told her as far as I'm concerned whatever differences we've had are water under the bridge, she didn't say much but at least we were able to make peace before she passes on.

 

[missy]

Hey all,

I just wanted to let you all know that I did read every post and wanted to thank all of you that shared your experiences. Just came to update quick but will respond to individual posts later.


She has decided to go back home and let her friends take care of her, they are employed through an agency and have been caring for her with her team of nurses. DH as well as most of the family doesn't feel this is best for her health BUT it is what she really wants. There was apparently a rather heated exchange yesterday between two of MIL's sisters because one sister does not want me taking care of her. It was rather shocking to hear this because I've never done anything to this person but she apparently has certain feelings yet is not an active caregiver and has not been present much at the hospital. Mind you she also upon seeing all the visitors MIL had Saturday made a comments about how she should have set up a table to hock some jewelry she sells. You know high class all the way there :roll

We did have a conversation with MIL and I told her as far as I'm concerned whatever differences we've had are water under the bridge, she didn't say much but at least we were able to make peace before she passes on.

Thank you for the update and I think this is working out for the best. You have made peace with your MIL and now she will be well taken care of by her friends and by professional health care workers. As for the relatives who have a lot to say and nothing to do (all talk no action) well I would not let anything they have to say bother you in any way. Consider the source and enough said.

Sending you good wishes and hoping things go as smoothly as possible. Keeping your family in my thoughts and prayers at this difficult time.

 

[MarionC]

This is such a difficult time of life. I was relieved to hear that she will not be spending her last days in your living room, especially as you have a family with young children. It is all so fraught without that added stress. You are a very thoughtful person and I can see that you have been doing your very best.
Wishing you and your family peace of mind as you all go through this.

 

[YadaYadaYada]

@luv2sparkle, being honest part of my motivation in having her live with us was that it seemed the right thing to do. I would hope he would do the same if my mother was in the same scenario. Even though she chose a different route and is staying home vs coming with us we were able to bury the hatchet so that alone will help everyone be more at peace.

@partgypsy, so essentially that will be her only option once her condition deteriorates to the point that she can no longer get care at home. We thought hospice was a wonderful option for her but it definitely has a stigma and that probably also influenced her decision to go home.

@Rfisher, even though this has already been settled I have to mention that at one point we were discussing visiting hours, because we have a school age child we simply can't be open all night. Anyways DH at one point said that if her boyfriend happened to be here around dinnertime he would like me to cook enough to feed him (and whoever else might be there that day). That would have been a slippery slope, I had to tell him that I'm not a hostess but a caregiver.

@pearlsngems your posts gave me a lot to think about and consider so thank you so much for that, they were really helpful when we were considering bringing her here and what the reality of that looked like.

@TooPatient, much like your grandmother, MIL will have everything she could possibly need supplied by hospice care, they actually delivered everything today so she could go home today and she just decided yesterday so that was pretty quick!

@rainydaze , thank you for mentioning the entertainment aspect because even though she will be home this will be helpful for her caregivers and is something I certainly wouldn't have thought of otherwise.

@AGBF, my gosh Deb my heart really goes out to you after reading your post about your father. What a wonderful daughter you are for taking such wonderful care for him, I'm sure he really appreciated it even if he couldn't express it.

@Calliecake, DH and I both agreed that hospice would have been a great option for her, especially because there is a very highly regarded facility in our state but she decided she would rather go home. While this is not what we believe is best for her, it's understandable that she would want to be back in her own home and stay there as long as possible. I just hope that her friends are able to fulfill their promises they made because DH has already told her that if it's not working out at home she will have no other option but hospice.

@missy thank you for the well wishes, it really means a lot and I hope that her friends are able to meet their promises as she does have a medical team but they are limited in the hours they can provide. I'm truly hoping it works out for the best for her.

@Jimmianne, being honest I was relieved that she decided not to come with us, only because it would have been a lot to undertake. She actually said she wanted to come here for a week trial run but DH told her that wouldn't be a good idea because of the kids and also because she was getting a hospital bed delivered so it would have been a real pain to move that from our house to hers or wherever she was going.

An update for today, MIL went home and SIL is setting up a schedule because she is not supposed to be alone so care needs to be coordinated to make sure either a friend or caregiver is there at all times. There are already problems because they are not allowing her to smoke and she is "flipping out" as DH said. I'm not sure if they are not allowing her to smoke because there is oxygen on the premises which I believe her hospital team said would need to be available if she needed it or if it is to keep her condition from deteriorating any faster. By the way this was probably one of the reasons she didn't come here, she knows she wouldn't have been able to smoke at all (inside or outside) if she was living with us. Both of my parents and now his mother will have all died from smoking related diseases once MIL passes and there is no way I would put my son's health at risk, DH feels the same.

In happier and non health news, tomorrow is our older son's 12th birthday, he has asked me to make him a cake with Warheads on it (super sour hard candies) so that will be a nice change although that means only six more years until college!

Again, can't say it enough but thank you all for your support and posts, they have all been very helpful and I appreciate everyone who took the time to write about their experiences and advice.

 

[monarch64]

I cannot imagine having to quit smoking unwillingly during the stress of a terminal diagnosis and dealing with impending end of life. I used to smoke and quitting took me YEARS to achieve. There has got to be something her healthcare provider can give her to help her through this--valium, edible marijuana? I don't know what all is available where you live or what they're willing to do for her but if I were your husband/relatives I'd be making some attempt to help her with regard to the involuntary smoking cessation. I'd be flipping the F out, too.

 

[Slickk]

I cannot imagine having to quit smoking unwillingly during the stress of a terminal diagnosis and dealing with impending end of life. I used to smoke and quitting took me YEARS to achieve. There has got to be something her healthcare provider can give her to help her through this--valium, edible marijuana? I don't know what all is available where you live or what they're willing to do for her but if I were your husband/relatives I'd be making some attempt to help her with regard to the involuntary smoking cessation. I'd be flipping the F out, too.

To piggyback on this...have her try an electronic cigarette. My mom used one at end of life and it gave her the nicotine her body craved without the combustible cigarette. I hear JUUL is a good one.

 

[pearlsngems]

No electronic cigarettes around oxygen!

Syracuse, N.Y. - A Syracuse hospital is warning patients not to use electronic cigarettes after a patient on oxygen caught fire while puffing on one of the devices.....


https://www.syracuse.com/news/index...ter_patient_catches_fire_while_using_one.html

 

[YadaYadaYada]

@monarch64 and @Sandeek, in the hospital they offered her gum or a patch and she declined both. She has applied to get a medical card here but I don't know if she actually has it yet.

When DH presented her options to her, he never told her she couldn't smoke at home, this is all SIL's doing. Basically we have taken a step back because SIL has stepped in, however she lives in D.C. so once she goes home MIL will probably be smoking again. SIL apparently doesn't support the idea of letting her live out her days as she sees fit but she will have to learn the hard way that you can't control every situation to your liking.

 

[YadaYadaYada]

Thank you for that information @pearlsngems

 

[Austina]

FWIW @StephanieLynn , I think it’s worked out for the best. I know you wanted to do what you felt was right, it would’ve been a huge strain on both you, and your family.

 

[YadaYadaYada]

I totally agree @Austina and after today I am even more convinced she should be in a hospice facility and not at home.

Here is today's update for anyone still reading along. We are ONE day in and there is already an issue with her not having care overnights on Saturdays. SIL put herself in charge of making a schedule to coordinate the friends and caregivers but she is just now figuring out that there is simply too much demand for too few people. MIL has fallen twice, she lied to the hospice nurse that she was allowed on stairs (when she isn't) and fell down two steps with the nurse. She also fell out of a chair when one of her friends left her to go into the kitchen for a few minutes.

SIL was up twice with her last night and sent a text to DH that she is overwhelmed and will be leaving on Saturday to "regroup" and sent DH a text asking if anyone in the family can help. Well through phone calls with various family members everyone is in agreement that she is not getting adequate care and should go to hospice. Essentially everyone is refusing to be on the care schedule to force her into hospice. It sounds cruel and terrible but it's completely unacceptable that one day in she has fallen twice. One of her friends acting as a caregiver is 72 with Parkinson's and another is her alcoholic boyfriend, neither of which can lift her up.

It is a giant mess.

 

[pearlsngems]

That is awful! It doesn't sound like the current arrangement is working out.

The question is, will she be compliant with hospice staff if she is an inpatient?

 

[TooPatient]

I'm sorry to hear it is working that way. I hope she agrees to go to hospice where she can get proper care. Might be worth pointing out she can smoke in hospice...

 

[YadaYadaYada]

That is awful! It doesn't sound like the current arrangement is working out.

The question is, will she be compliant with hospice staff if she is an inpatient?

It's hard to say, she wears a different hat depending on who she is dealing with. My guess is she knows she can get away with certain behaviors at home (like lying to her nurse) but she wouldn't be able to do that in hospice. I get it, she wants to be home because it is familiar and comforting but this is not going to work. Honestly I was very surprised that this is all happening after only one night and that SIL who is essentially the go to person now is just up and leaving Saturday.

 

[YadaYadaYada]

@TooPatient, we told her that she could smoke in hospice when we met with her Monday but we found out that one of her caregivers (who is also her landlord so she has a vested financial interest in keeping her home) met with her and a social worker at the hospital before we got there and we believe convinced her to go home. There was a small group of her friends and one of her sisters who promised her the world if she went home instead of coming with us. Now they are suddenly not as available as they promised.

 

[pearlsngems]

It becomes overwhelming quickly. People overestimate their ability to cope for long hours with the level of care and attention needed. A patient who can't really be trusted makes it even harder.

The thing is, no one will be able to watch her all the time at the hospice either. The falls may continue.

Does she use a walker?

 

[YadaYadaYada]

@pearlsngems, I know I'm the hospital they had an alarm on her in the chair if she tried to get up. Would hospice do the same thing? I know it's not practical to have someone with her all the time in hospice but I wasn't sure what resources they might have.

She does have a walker. To make matters even more complicated, her apartment only has a bathroom upstairs. That's when she fell down the two steps, the nurse brought her upstairs to wash up and she fell coming down the stairs on the bottom two steps.

 

[TooPatient]

Hospice probably has bed alarms too. The neurological hospital I was in set those dang alarms so I couldn't get up without an alarm going off. Aggravating to lose that independence, but definitely needed if she is falling. The nurses in the hospital were trained to deal with patients who didn't like the restriction (I had a neighbor who did NOT care for the thing...) so hospice are probably used to dealing with that too.

 

[pearlsngems]

After she broke her hip and was in the rehab unit, my mother had a seat alarm and bed alarm that sounded if she tried to get up (which she did often because she could not remember that she had a hip fracture), but really they were not enough. By the time someone can respond to the alarm the patient can already be on the floor. They had to put her, in her wheelchair, right across from the nursing station to keep an eye on her during the day.

A few years later-- by which time Mom had a 24/7 live-in caregiver in her apartment-- she continued to have occasional falls. Unless the caregiver happened to be right there standing beside her chair when Mom suddenly got it into her head to stand up and walk, it was impossible to reach her in time. Falls stopped being a risk only when she was no longer strong enough to get up to a standing position unassisted.

 

[Austina]

I’m afraid I’m not surprised to hear that it’s not working out. SIL for whatever reason, didn’t want you to do it, but has realised it’s a full time job, and she’s not up to it.

Hospice staff are well used to dealing with awkward patients, and it’s not personal for them like it is for family. Having an upstairs bathroom just isn’t practical, and whether she likes it or not, MIL will be better off in being cared for by professionals in a suitable facility.

 

[AGBF]

I have been "reading along", as you put it, StephanieLynn, and all the issues we went through are coming back to me. It is why I said that I couldn't have done it without our live-in aide. My father was a fall risk, which is how we wound up with the aide in the first place (a fall brought us to the ER the night I had admitted my daughter to a psych hospital). You cannot tie a patient in bed. A patient has to be watched all the time if he is a fall risk gets out of chairs. If you have to cook, the patient has to be brought into the room where you cook unless he us stable walking alone. (Or unless there are two people as there started to be in our house once we had our aide.) It was a nightmare. I am so sorry you are all going through this.

Hugs,
Deb

 

[missy]

I’m afraid I’m not surprised to hear that it’s not working out. SIL for whatever reason, didn’t want you to do it, but has realised it’s a full time job, and she’s not up to it.

Hospice staff are well used to dealing with awkward patients, and it’s not personal for them like it is for family. Having an upstairs bathroom just isn’t practical, and whether she likes it or not, MIL will be better off in being cared for by professionals in a suitable facility.

Agree completely and I am so sorry about the latest updates.

@StephanieLynn my dh and I just watched a Netflix short film last night that was excellent called End of Life. It is a documentary about the different options for end of life care. I thought it was beautiful while very sad. Perhaps you and your dh might want to watch it if you haven't already.

Sending continued good wishes and keeping your family in my thoughts. It's a challenging time to say the least and you are doing the best you can do. Ultimately your MIL is still in charge of making the decisions for herself while she can and you can only do what you can do.

 

[Tonks]

I’ve been reading and I’m so sorry things aren’t working at home.

My father was in hospice in the hospital for the last few weeks of his life. There was no way we could have cared for him at home. Thankful that it doesn’t sound like your MIL is in pain, but if that ever becomes an issue, hospice is the place to be. They have access to so much in the way of pain control that truly, I don’t know how you would manage without at home.

Thinking about your family and hoping you can find some solutions that work for everyone. This is such a hard thing.