Words of wisdom needed for care of very sick mil

[Sonshine]

1 1/2 weeks ago my mil passed out several times from a combination of a very low oxygen level and upper respiratory infection. At least, after many tests, MRI, CAT scan etc. that was the best the doctor could surmise. She has been on oxygen for 5 years now. She also weighs 88 pounds and can't/won't eat enough (steadily continuing to lose weight). We are caring for her around the schedule of a daytime weekday caregiver. She is mobile, but needs help with meals, bathing, etc.

 

She is a very important part of our lives. We will all be devastated when she passes away. I know she is worried sick about her condition but doesn't like to talk about it, to the point of ignoring important symptoms (ex. feet and ankles swollen with fluid retention) and getting upset if you point them out and suggest she go to the doctor. Lately, the doctors haven't been very helpful but she is not willing to follow their advice either - eat and drink more. I think it is quite possible that her life could be extended with proper medical care but that would involve more doctor appointments.

 

She very much insists on being in control. She asked me to get her a medicine and bring it in to her in the other room, but couldn't remember the name of it. When I asked if she had the names and times she was supposed to take the medicines written down, because that is a lot to keep up with, she ignored me. When my dh took her to the emergency room and they asked him what meds she took, he was embarrassed he didn't know (they thought she was coding during one of the tests). But she doesn't want to have that kind of conversation.

 

I love her and understand her fear, but don't know how to deal with her. She doesn't want me to point out any medical problems and suggest she have a doctor look at them.

 

I guess I need two kinds of advice - how to talk and act around her given her poor medical conditions and likely end of life in the not too distant future, and how to deal with her and her son (my dh)'s desire and insistence on being in denial about some of her medical and behavioral conditions. For example, she and my dh insist she has gained weight. Well, yes when you have swollen feet and ankles that is a water weight gain, but they insist it is regular weight gain and downplay the swollen ankles.

 

Oh, and how to try to have as normal of life homeschooling the kids in the meantime. We are all Christians. My kids and dh are going to be very upset when her time here is up (me too).

[kalanamak]

 

I love her and understand her fear, but don't know how to deal with her. She doesn't want me to point out any medical problems and suggest she have a doctor look at them.

 

I guess I need two kinds of advice - how to talk and act around her given her poor medical conditions and likely end of life in the not too distant future, and how to deal with her and her son (my dh)'s desire and insistence on being in denial about some of her medical and behavioral conditions.

 

I looked at my mother's situation as a continuation of the way she lived her life: keep on keeping on, and when your time is up, your time is up. By the time she got help, due to chest pain, she had uremia, anemia, CHF and advanced chronic leukemia. No one forced her to get medical care because it was inconsistent with her way of life. She died as she wanted to: at home, all her mental capacities intact, with her cat and a two calm, helpful grown children. We really didn't make it a stink. I knew she'd die that year because she hadn't put in a garden that spring. And as soon as my brother called with some hesitation in his voice, I hopped a plane.

 

I would love her now, and make her comfortable. I'd make some memories and ask some questions about her younger days. Maybe make a video. I'd respect her wishes, even the wish not to speak about this directly, for she has been herself and in her body for longer than you have been alive. I believe at the end of life, it is the healthy's duty to match their steps to the steps of the dying. Do unto others, and all that, even if the steps you'd take at the end of your life are of a different nature.

 

I encourage you not to make her last year or two a battle. How to deal with? Cook her favourite pie. Watch a funny movie with her. Water her indoor plants for her. Tell her cute things the kids did. Have them draw for her. Buy her a music box. Etc. Don't make it about your need to talk about things.

 

:grouphug::grouphug: It is hard.

[Parrothead]

:grouphug: I'm so sorry you are going through this. The only thing I can think of is to make an appointment with her regular doctor and take her. Prior to going insist that either you or dh go back with her so at least one of you has the proper information about her care.

 

Will she go to assisted living? They will be able to keep up with her meds and food intake better than you or dh can.

[Sonshine]

Those are the kind of wise words I wanted and needed. Thank you.

 

Two of my kids wrote a long poem to her when she was in the hospital and we snuck the kids in to read it to her. She was very touched.

 

I am opposed to assisted living because I don't think they will take as good of care of her as we are. And she is comfortable in her own home. Plus they can't force her to eat either. I think my dh may be able to get her to let him write her meds down. A friend of mine's mother is taking care of her during the day and is quite good with her. I wouldn't expect anything better in an assisted living facility. But thank you for the ideas. It feels good to know people care.

 

She doesn't have a gp and that is part of the problem - the specialists all look at the problems she has directly related to their specialty and ignore the others. I did get a tip on a good geriatric center in our city and have that in mind should she be willing to try it, but am waiting for the right time to bring it up. I don't blame her for being tired of going to doctors and having tests and no good results - other than the obvious - eat and drink more.

 

She did great on an appetite stimulate while in the hospital, but the side effects can include strokes. She decided not to take it upon returning home and I understand - a stroke is terrible.

[Kate CA]

I really sympathize with you on this. We had a lovely grandmother who was similar to this. Does your dh have any siblings or does your MIL have anyone in her life (sisters, etc.) that she trusts and loves or is your dh an only child? I will share our experience and perhaps you can take something away from it.

 

My husband's grandmother (GM from now on) was not well and was living on her own. She sounds similar to your MIL in temperament, but not quite as stubborn. It was *dangerous* that she was living on her own and everyone in the family knew this. Everyone was so concerned with allowing her to make her own decisions that they were not always willing to say things that are hard to hear. No one wants their privacy or their ability to make their own decisions inhibited, but at some point their lack of willingness to face reality becomes a detriment to their lives.

 

This is where we as family have to step in and eventually her children did. My own MIL moved in to make sure she was eating, going to the bathroom, taking her meds, etc. She simply could not do all of that on her own anymore. The grandchildren and great grands (us) did things for her that neither of them could do well - cleaned the house, garden work, etc. She was so upset that we were doing these things, but they had to be done. She could not do them and was *so* resistant to us doing them, but we did them anyway over her protestations. She did appreciate it, but it was difficult for all because she just could not accept it well. (She was a stubborn depression baby.) :)

 

It is going to be very important for you and your dh to be on the same page here. You are going to have to make hard choices and she will not like that you are doing it. Your dh should be at the forefront of this and he needs to face reality. That is the truth. You just never know what is going to happen and at some point you need to make those decisions for her. This is HARD to do, but necessary if you love her and want her to live. You should be going to the doctor with her, sharing your own concerns at this point. What is he saying to her? The elderly can sometimes be incredibly stubborn, but we must be just as stubborn in our love and care for them.

 

Our dear sweet grandma died a few months ago very suddenly right after we had been there. It was hard and we miss her. She was a cheerleader for our family and one that is greatly missed. I still have a hard time thinking she is gone. Don't wait until you cannot help her to help her because you just don't have any idea how long she has. :grouphug:

[Corraleno]

I looked at my mother's situation as a continuation of the way she lived her life: keep on keeping on, and when your time is up, your time is up. By the time she got help, due to chest pain, she had uremia, anemia, CHF and advanced chronic leukemia. No one forced her to get medical care because it was inconsistent with her way of life. She died as she wanted to: at home, all her mental capacities intact, with her cat and a two calm, helpful grown children. We really didn't make it a stink. I knew she'd die that year because she hadn't put in a garden that spring. And as soon as my brother called with some hesitation in his voice, I hopped a plane.

 

I would love her now, and make her comfortable. I'd make some memories and ask some questions about her younger days. Maybe make a video. I'd respect her wishes, even the wish not to speak about this directly, for she has been herself and in her body for longer than you have been alive. I believe at the end of life, it is the healthy's duty to match their steps to the steps of the dying. Do unto others, and all that, even if the steps you'd take at the end of your life are of a different nature.

 

I encourage you not to make her last year or two a battle. How to deal with? Cook her favourite pie. Watch a funny movie with her. Water her indoor plants for her. Tell her cute things the kids did. Have them draw for her. Buy her a music box. Etc. Don't make it about your need to talk about things.

 

:grouphug::grouphug: It is hard.

 

:iagree:

This is exactly how *I* would want to be treated. I would be very angry and upset if I were treated as if my life no longer belonged to me, but was somehow the property of others, even if those others were family members I loved more than anything in the world. The idea that the elderly need to be "forcibly" cared for, even against their will, because "it's what's best for them" really bothers me. Probably not a popular opinion, but it's how I feel — and how I hope my children feel when I'm old.

 

Jackie

[Kate CA]

The idea that the elderly need to be "forcibly" cared for, even against their will, because "it's what's best for them" really bothers me.

 

In case you took my post to mean this (and I am not saying you did or did not) this is not at all what I meant by it.

[Corraleno]

In case you took my post to mean this (and I am not saying you did or did not) this is not at all what I meant by it.

 

No, it wasn't directed at you. I just have personal experience seeing friends and relatives treated as if they were children, dragged to doctors they didn't want to see, put on meds they didn't want to take, hospitalized when they really just wanted to die at home in peace, as Kalanamak's mom was allowed to do. What appears to outsiders as "denial" may in fact be a conscious choice to spend what time a person has left living as "normally" as possible, rather than being consumed with doctors and tests and treatments and thinking every day about their illness and imminent death. I think that's a valid choice that people should be able to make. A friend of mine who died of AIDS many years ago complained that the psychologist at the hospice kept insisting he was in denial and needed to face up to his fate and prepare for death. Bob said "Why? It's not like death won't take me if I'm not 'prepared.' Why do I have to spend my last few months dying instead of living?"

 

Jackie

[Kate CA]

No, it wasn't directed at you. I just have personal experience seeing friends and relatives treated as if they were children, dragged to doctors they didn't want to see, put on meds they didn't want to take, hospitalized when they really just wanted to die at home in peace, as Kalanamak's mom was allowed to do. What appears to outsiders as "denial" may in fact be a conscious choice to spend what time a person has left living as "normally" as possible, rather than being consumed with doctors and tests and treatments and thinking every day about their illness and imminent death. I think that's a valid choice that people should be able to make. A friend of mine who died of AIDS many years ago complained that the psychologist at the hospice kept insisting he was in denial and needed to face up to his fate and prepare for death. Bob said "Why? It's not like death won't take me if I'm not 'prepared.' Why do I have to spend my last few months dying instead of living?"

 

Jackie

 

Thanks for clarifying. I wasn't advocating for what you described. There are some things though, that are safety related that are uncomfortable for our elderly loved ones to deal with that we have to step up and say, "You need help here." That is what I mean--not forcing treatment on someone.

 

I do think though, that as people age they don't always understand what is going on and they need help when they don't think they do. Our grandmother needed help and one of the times it wasn't there, she fell and could not help herself. She was on the floor for six hours one time all alone. Se didn't choose that and had to wait until someone came home. There are times when we who love our elderly family have to step in and say, this is no longer safe for you to be here alone all day (or another similar situation). If that bothers her - that she loses her ability to be alone all day - well it has crossed a line then that we were not willing to let slide because we love her. We have a responsibility *towards* our elderly family too. If we didn't take that seriously then we would be neglecting her.

[Sonshine]

Thank you for all the responses. She is not an only child. One other son is not very involved, but will occasionally help. Her daughter lives one hour away and is on the same page as I am about what reality is and they she needs more medical attention, but doesn't actually come see her very often. She talks to her on the phone but my mil gets off the phone very quickly with her.

 

We have been through this once before when she had cancer. She was going to a doctor who took 6 months to get all the tests run and then finally suggested she go elsewhere. which is what my sil and I tried to get her to do. She got treatment- fast and over with and no more cancer 5 years later. However, due to her stubbornness on going to a competent doctor, she suffered irreversible health damage in the meantime.

 

I know my dh will continue to vacilate between being more realistic about her symptoms and refusing to budge from the ridiculous assessment of her problems- such as the water weight gain being true weight gain. He is honest about her poor medical help and that she will not likely last long but doesn't want to disagree with her state of denial about specific medical issues. I have said before that if you could make money off of a person'a ability to be in denial about things, he would be a millionaire. He displays this trait in other areas of life as well. Maybe that is a happier way to be.

 

So I don't expect anyone's role and behavior to change. I think at this point

I will only alienate myself from my mil and husband if I don't just shut up and let them carry on as they wish. I will have the name of other doctors to try if she desires to get further medical treatment from someone new. I will try and bring joy to her life as others have suggested, but have to take a break when

it gets too emotionally difficult to be in her presence and ignore the obvious - she isn't eating and drinking near enough and her ankles are swollen and no one knows why, as well as other issues. I am a problem solver by nature and it is difficult to ignore such huge problems. Of course, I can continue to go to God with my concerns and stress.

 

I do feel inadequate knowing she is worried sick. I am not much of a counselor and she doesn't want to talk about it anyway - not that I would be the best person to talk with her. I am going to see if our church can send out people to talk with her. We all go to the same church.

[sparrow]

I would love her now, and make her comfortable. I'd make some memories and ask some questions about her younger days. Maybe make a video. I'd respect her wishes, even the wish not to speak about this directly, for she has been herself and in her body for longer than you have been alive. I believe at the end of life, it is the healthy's duty to match their steps to the steps of the dying. Do unto others, and all that, even if the steps you'd take at the end of your life are of a different nature.

 

I encourage you not to make her last year or two a battle. How to deal with? Cook her favourite pie. Watch a funny movie with her. Water her indoor plants for her. Tell her cute things the kids did. Have them draw for her. Buy her a music box. Etc. Don't make it about your need to talk about things.

 

:grouphug::grouphug: It is hard.

 

 

Thank you. I needed to read this today.

[Kate CA]

Thank you for all the responses. She is not an only child. One other son is not very involved, but will occasionally help. Her daughter lives one hour away and is on the same page as I am about what reality is and they she needs more medical attention, but doesn't actually come see her very often. She talks to her on the phone but my mil gets off the phone very quickly with her.

 

We have been through this once before when she had cancer. She was going to a doctor who took 6 months to get all the tests run and then finally suggested she go elsewhere. which is what my sil and I tried to get her to do. She got treatment- fast and over with and no more cancer 5 years later. However, due to her stubbornness on going to a competent doctor, she suffered irreversible health damage in the meantime.

 

I know my dh will continue to vacilate between being more realistic about her symptoms and refusing to budge from the ridiculous assessment of her problems- such as the water weight gain being true weight gain. He is honest about her poor medical help and that she will not likely last long but doesn't want to disagree with her state of denial about specific medical issues. I have said before that if you could make money off of a person'a ability to be in denial about things, he would be a millionaire. He displays this trait in other areas of life as well. Maybe that is a happier way to be.

 

So I don't expect anyone's role and behavior to change. I think at this point

I will only alienate myself from my mil and husband if I don't just shut up and let them carry on as they wish. I will have the name of other doctors to try if she desires to get further medical treatment from someone new. I will try and bring joy to her life as others have suggested, but have to take a break when

it gets too emotionally difficult to be in her presence and ignore the obvious - she isn't eating and drinking near enough and her ankles are swollen and no one knows why, as well as other issues. I am a problem solver by nature and it is difficult to ignore such huge problems. Of course, I can continue to go to God with my concerns and stress.

 

I do feel inadequate knowing she is worried sick. I am not much of a counselor and she doesn't want to talk about it anyway - not that I would be the best person to talk with her. I am going to see if our church can send out people to talk with her. We all go to the same church.

 

I think you are doing what you can. You can't force others to change their behavior. It is difficult when you are the in law and see things no one else does. I have been there and I know the heart issues you are dealing with. :grouphug::grouphug:

[Sonshine]

Thanks for the kinds words Kate. You summed it up well.

[cjbeach]

1 1/2 weeks ago my mil passed out several times from a combination of a very low oxygen level and upper respiratory infection. At least, after many tests, MRI, CAT scan etc. that was the best the doctor could surmise. She has been on oxygen for 5 years now. She also weighs 88 pounds and can't/won't eat enough (steadily continuing to lose weight). We are caring for her around the schedule of a daytime weekday caregiver. She is mobile, but needs help with meals, bathing, etc.

 

She is a very important part of our lives. We will all be devastated when she passes away. I know she is worried sick about her condition but doesn't like to talk about it, to the point of ignoring important symptoms (ex. feet and ankles swollen with fluid retention) and getting upset if you point them out and suggest she go to the doctor. Lately, the doctors haven't been very helpful but she is not willing to follow their advice either - eat and drink more. I think it is quite possible that her life could be extended with proper medical care but that would involve more doctor appointments.

 

She very much insists on being in control. She asked me to get her a medicine and bring it in to her in the other room, but couldn't remember the name of it. When I asked if she had the names and times she was supposed to take the medicines written down, because that is a lot to keep up with, she ignored me. When my dh took her to the emergency room and they asked him what meds she took, he was embarrassed he didn't know (they thought she was coding during one of the tests). But she doesn't want to have that kind of conversation.

 

I love her and understand her fear, but don't know how to deal with her. She doesn't want me to point out any medical problems and suggest she have a doctor look at them.

 

I guess I need two kinds of advice - how to talk and act around her given her poor medical conditions and likely end of life in the not too distant future, and how to deal with her and her son (my dh)'s desire and insistence on being in denial about some of her medical and behavioral conditions. For example, she and my dh insist she has gained weight. Well, yes when you have swollen feet and ankles that is a water weight gain, but they insist it is regular weight gain and downplay the swollen ankles.

 

Oh, and how to try to have as normal of life homeschooling the kids in the meantime. We are all Christians. My kids and dh are going to be very upset when her time here is up (me too).

If she'd agree to a visit to her primary (with your dh's urging) it sounds like she needs to be seen. If not ask your dh to call the primary and ask to arrange homecare nursing. I think having a homecare RN peeking in to check on her would help everyone and if the time comes for a hospice referral, the nurse can make the referral.

I would go somewhere any buy one of those 7 day pill boxes with different compartmentf (breakfast, lunch, dinner, and bedtime) and someone pre-fill them. She may really be agreeable to that simple task.

I'd also keep a running list of her meds for her on her frig to take to any and all doc appointments (and use that to prefill her med box). These boxes are really effective for the elderly.

Does she have COPD? Most times in elderly COPDers it is just so difficult for them to eat due to shortness of breath and exertion. I found they do drop weight quickly as they age, despite steroid use. Will she drink Ensure, Boost, or any generic shake for meal replacement? My dad has emphysema and during period of exascerbation has pretty much existed on Boost.

She's lucky to have you involved!!!

Edited September 16, 2010 by cjbeach

[Alyce]

My father has always been a stubborn man. He was a medic in WWII and because of his experience there says he doesn't trust Drs. He absolutely refused to go see a Dr even though he was having health issues. At one point we called an ambulance but he would not go so they told us there was nothing they could do if he wasn't willing to do it. One night he had a light stroke. At first he didn't want to go to ER he kept telling us everything was fine. You can't force someone to do something he doesn't want to do. We finally got him to go and the stroke resulted in some loss of movement in his leg. Because he needed rehab we tried to talk him into going to a reahab. He wouldn't do it, he said he wanted to go home. They said the only way they could send him home was if he had someone to take care of him. He refused saying he didn't want anyone in his house. We finally got him into rehab. After 3 months he could walk with a walker. We began talking about placement. We discussed having some one come and stay with him or him going into assisted living. He refused both. My sister and myself who live near him said we weren't going to take him home and he even refused to go live with one of us. The facility said they couldn't hold him any longer and since we didn't have power of attorney we couldn't force him to do something he didn't agree to. He took a taxi home and signed out against medical advice. He kept getting worse. He did agree to go see a Dr because he was having difficulty breathing. He got some meds for COPD but wasn't using them right. Sis went over and wrote everything down, put all his pills in a pill box etc. He continued to refuse to do anything. The only thing we could do at that point was to declare him incompetent and get "custody" of him. It was a hard decision to make. It's easy to say "make him do it" but legally you can not. Unfortunatley the same day we signed the papers to show that we had gotten a power of attorney he had another stroke. Again there was talk of rehab and he knew he didn't have a choice this time. A couple of days later he died in the hospital. To this day I know part of it was his failure to take care of himself but partly it was his grief in lossing control so he gave up. We did everything we could to get him to go to get care and to take care of himself. He refused everything. I do wonder if things might have been different if we had declared him Incompetent earlier but I doubt it. He was just too wanted to be to much in control and he still would have broken him. My advice to you is to do what you can, if she says no there really is nothing legally you can do if she still refuses treatment. If her health continues to deteriorate and you can prove she is a danger to herself or that she is demented in some way you can petition to have her declared legally incompetent and then you'll be able to step in. For now ask her periodically and in the meantime enjoy her as much as possible.