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Dr. said he meets qualifications of hospice. His wife choose Palliative care. She seems to deny his condition and is constantly nagging about doing your exercises. He had a stroke a yr ago and again in Jan 2018. He was in skilled care for 6 weeks. He hasn’t walked in a year, has a broken leg from Jan they couldn’t fix and his decline this time is severe. 2 days after he for home, almost 2 weeks ago he is so weak. He has ask voice but he recognizes everyone and is happy to see us. The wife is POA and refuses to allow us to talk with his Dr or care team. She said PT came to the home today and his hips are sore and he has a shoulder with a lot of arthritis so through can it cortisone shot in there before he left hospital. She says he won’t get better if he doesn’t try. Well he is all bones, can’t turn over himself, has catheter, permanent one, and he hasn’t gone to a bathroom in months. He eats very little and mostly cuz she demand that he does. I just want him to have peace and to stop hearing how lazy he has always been. He was scared the days he was in hospital but that seems gone, he just more calm and just trying be as ok as he can. He has CHF and stroke history. I believe he has one from the 2 pics sent in last 2 days now left eye drooping and almost shut. Any advice? She hasn’t answered phone in 5 days and didn’t let me and kids see him this weekend /Memorial Day, I admire her care in some ways? She’s there day to day but why can’t we even talk to Dr? My Dad wouldn’t want that.

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Oh she had no children. Has 1 stepbgranchild that she does lots for and talks only of him. He lives states away so never met him. He has siblings but she never talks about them
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She doesn’t seem to have any friends around . I’ve never seen any this whole time
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Oh I have no idea about my Dads assets only that his are limited and all goes to her when he dies. The executor of his will is someone we really don’t know much. He’s my fathers step brother, his dad died young and his mom remarried a wonderful man in her early 60s - he was only grandpa I knew on that side and such a great man. He had 3 kids but they lived pretty far away and we never knew them well and it was her idea to make sure it was none of the kids - so it’s a step brother he really doesn’t know well who was confused about why he’d b asked but agreed to it. I have never asked about any kind of estate. I don’t want money, I want him to die in peace. She knows what she’s doing though money wise... she is pretty savvy that way
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They are definitely under paid but also are not CNAs and do some caregiving but are really not familiar with my Dads condition. Ok now I’m going to sound super nuts but when I was there 6 days ago 1 of the “caregivers “ was there, she is very overweight & I’m not being mean but she’s huge. Anyway they proudly told me this woman let’s call her Ann - that Ann found a way to use the gate belt and just wrangle him out of bed so he could sit in chair for us to see him. His hands were like ice, his head droopy, like having hard time holding his head up so I put his electric recliner back a bit more and got a pillow so he could rest his head to the side at least. He whispered ‘thanks, I love ‘ like he didn’t want her to hear. We were leaving and this huge woman who I really doubt gets her arms around her own middle (again I’m not trying to b mean, it’s just true) sorta hoisted him up and on to wheelchair. I couldn’t hold it, I started to cry and said please let me help u put him in bed. “No. What do u think when you’re not here?he can bear some weight on legs” no he can’t. I called my sister and she thinks I’m obsessed and that they r doing the best they can. After this input and what I should have already realized, I don’t!!! They could drop him!! Couple weeks before I heard from his wife that ‘Ann’ that they did drop him cuz he wasn’t trying but only the helper hurt her back, Dad was fine.... what could she b hiding? I feel now like she doesn’t want real nurses there and the ones she has aren’t nurses and seem to do everything she says . Wow maybe I’m not crazy ....
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Tom, in the first post after mine, I definitely see some martyrdom and perhaps desire for sympathy in her personality, and cruelty in withholding meds.

Two dead husbands already? Does she have a red mark anywhere on her? Seriously, two dead husbands already is scary.

Follow Blannie's advice and get a background check done; maybe the police can help you. Or maybe a private eye can. If she has substantial assets from previous husbands, I might be thinking about filing for guardianship or conservatorship or both, although I have a feeling she'll bring out all her little black legs and sting you.

Seriously, Blannie's hit the nail on the head. Has she lived in different states with the previous 2 husbands? Traveled around a lot? Does she have any children by her previous husbands or your father?

Do you have any idea what HER assets are?

The arsenic issue is really unsettling.

I do know, however, that arsenic can be ingested in some very strange ways. After my sister died, I read through her medical records and discovered she had had blood work done by a homeopathic doctor. The report showed arsenic in her system. I was horrified and called the doctor.

He explained that arsenic can be found in some common areas, and that his own daughter was being treated for arsenic acquired from eating berries that were in contact with or close to treated lumber.

Now that does NOT surprise me. I'm not sure if lumber is still "treated" with Chromated Copper Arsenate (CCA) (with arsenic), but we organic gardeners would never use any treated lumber for our veggies.

Do you really know what assets your father has?

It may also be that there's some psychological anomaly, maybe some issues with men (I'm really speculating now) and she needs to keep them under her thumb. I honestly think that the mishandling of your father's dysphagia is seriously close to abuse.

BTW, $9 an hour is cheap, really, really cheap. Private duty runs anywhere from $25 up. One of the firms I interviewed charged something like $60 an hour for one LPN visit.
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Wow. It is weird right? Why wouldn’t anyone want hospice especially if they were concerned about finances? She has a 2017 jeep suv she paid cash for last yr with 5,000 Miles on it. Healthcare is expensive BUT she is paying $9 an hour for 10 hrs a day. My Dads social security is mac 1 can get And he has a decent pension sooo...
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I'd do a background search on her to see if she has a criminal history. Sounds like she's got a good financial set-up with your dad, even after he's gone. I watch enough Investigation Discovery channel (all murder all the time) that I'd be very suspicious of her after his arsenic levels and her prior history of husbands dying. That would make me pay VERY close attention to what is happening with your dad. That is super scary!
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Garden Artist - u said ‘another possibility, one which I first thought of: a sort of, variation of Munchausen's by Proxy.’ Hmmm interestingly enough about 5 years ago my Dad had arsenic poisoning- for real, the dr was concerned because his levels indicated a source not from tap water which I guess in some places u can find traces in people from water but not where he lives and not the level he had. I asked about what they think causing it??? My Dad said they don’t know and nothing was ever really said about it again. Creepy. My Dad will b the 3rd husband she has had that died. One was stroke, don’t know how other 2 died... man I don’t want her to find this and figure out any identifying info lol
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Thank you Garden Artist. I’ve thought the same. She has no desire to even think he would need suctioning... Ug!! Denial or control? I don’t know . She’s always been controlling. We have never eaten dinner or been invited to their home. We always just invited ourselves and it was always a short visit and awkward and sad for him. We were raised always offering food and drink to guests. He was always hurt if he suggested ordering a pizza or something and she’s say we have dinner planned and he’d just hang his head so we always said that’s ok we ate etc but could see the hurt. I think he married her to not b alone and because she did take care of him even when he was still working and he liked that. She goes on and on about how he has always expected her to take care of everything... well u married him lol
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Oh btw money is an issue but they built a nice house8 yrs ago, it’s paid for in full. He has a great pension she will continue to get when he dies and they inherited money from my grandfather who trusted he would give something to grandkids. We are the only cousins who got nothing. They r not hard up for money
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First off I had to change my screen name by a number cuz I couldn’t log in again!! U have all been so kind and given me so much to think about! Blannie u r so very right - crazy thing happened here too - when she took him home she stopped all Ativan and pain meds cuz he needs to get better she says. Jeez. He moans all night so she only gets 2 hrs sleep she says. Give him the Ativan at least at night. It’s cruel. I finally spoke to her today and I was as nice as I could possibly be. I told her I admired the care and dedication she has.. to which she said I still have to work to pay for your dads care! She’s 67 and wasn’t planning to retire soon. She has caregivers she has hired for the times she works 8 to 1 everyday I guess. Then one comes from 5 to 9 pm. She lied to dr cuz he wouldn’t release him without 2 people being there 24/7. I do think he has good care right now she is attentive and he’s always clean etc. today she finally said dr told her eating is no longer a priority and shouldn’t be force fed. Finally. She said he’s not drinking or urinating much, all part of shutting down I think??? He moaned some. She refused Palliative care - so far she says they won’t b doing anymore than she and the girls can do- yes like administer meds!! But I said nothing. She said I agreed to meet with them once this week but as soon as they want money I’m going to kick them out. I reminded her that dr okayed hospice and it’s 100% paid. She said ur Dad said no to hospice, all I know is she makes decisions all the time for him and says dr says he can’t make his own decision and why not start it and if he gets better, he can stop cuz my hospice nurse friends say that people do graduate from hospice just not usually. I do understand the financial burdens. We had to sell our family home, move to completely different school system and rent a tiny place which we r still in because of medical expenses. I get it. We had 3 boys 4th grade 6th grade and 8th. It was heartbreaking but u gotta do what u gotta do. And by the way I don’t owe them a dime, they didn’t so much as contribute a night of babysitting or come to see us after open heart surgery for many months and my Dad always joked don’t call unless u have good news. So he used to b the selfish one and now his wife in control control control and the tables turned. I’m not bitter, it’s just him and I just miss him and in the rest of my family no matter what when someone is in his condition I put all feelings aside, not the time to think of bad times, we came together for others we have lost, I just want to b there because I KNOW when we were there, grandkids and my sister - brother in Florida hasn’t been back yet - works a high pressure job but not excuse. I know he relaxes and smiles sometimes just with his eyes. When I stayed overnight at hospital with him 2 weeks ago for 2 nights just holding his hand, listening to Johnny cash lol and being there when he’d yell help me he’d calm right down. I hope to see him Saturday. 6 more days and hoping she doesn’t have another mood swing. I am grateful for the care he is getting, I want hospice or palliative care at home if it were up to me and I accept it’s not. Thanks to all of u who have been through and have shared your thoughts. It helped me to refrain from being an azz!! Lol I’m typically not a confrontational person and hate it anyway!! Thanks all for yr thoughts
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Notwithstanding that she's his health care proxy, you can contact APS and ask for an evaluation. My experience with their intervention hasn't left me with a good impression on their willingness to intervene, but it might shake her up a bit and it might even result in medical intervention.

Other options:

1. You don't need to have proxy authority to contact the home health care agency and express your concerns. They shouldn't release information to you pursuant to HIPAA, but that doesn't mean that someone won't take your concern seriously.

2. Do the same with your father's medical team. Same restriction on release of information would apply, but what you're doing is reaching out beyond your stepmother to the doctors, indicating/inferring/questioning if proper medical treatment is being administered by your stepmother.

There might even be the possibility that attempting to feed a dysphagic, NPO patient might be considered abuse.

If you want to, copy other doctors on the letter; and hand deliver them. That'll get more attention than texting or e-mailing.

Or do it anonymously, b/c stepmother just might cut you out completely when she becomes irate that you're challenging her care.

From your description, stepmother is going to insist on her style of "management" and not only alienate her step sons and daughters (?), but solidify her control.
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Tom, your stepmother might recognize not that your father is either in or close to slipping into a terminal state and (a) refuses to accept it and is in denial, or (b) is a dominating person and insistent that some kind of improvement is possible. Maybe she has a "hero complex." There's a reason for her complete control and refusing to provide the family with information.

There's another possibility, one which I first thought of: a sort of, variation of Munchausen's by Proxy. She's not deliberately making him ill.... or is she? She's not playing the heroic savior, but she's definitely not caring for him properly, or safely. She doesn't meet the disease standards, but she's exhibiting jeopardization of his health and being the sole caregiver to cure him. Whatever, she's definitely not helping him and not seeing the whole picture.

I also don't understand how she can work and with hired caregivers provide the monitoring and assistance he needs. Perhaps she fails to recognize that. I also couldn't help wondering if, like another poster here has been explaining, she suffered a loss with an earlier family member and now is insistent that she won't allow that to happen again (although she's pushing your father toward the end very quickly).

Has she always hovered over him and been this insistent and "hands on" when it comes to his care?



From your description, she seems to feel that her efforts can improve his life. But she's increasing his risk of aspiration and death, while allegedly trying to "improve" his condition.

He has dysphagia, a swallowing disorder that can cause choking and aspiration. Her forcing him to eat or drink is going to put him into aspiration pneumonia, or even worse and more traumatic, cyanosis. That's happened to my father, who was also dysphagic. And fortunately I had already taken him to the hospital so he was in the presence of a speech therapist, nurse and internist when his face turned blue from choking on food which blocked his airway.

You wrote: "

She was "pouring liquids in mouth when he was not alert …" That's unsettling, and frightening, and IRRESPONSIBLE.

Treating someone with dysphagia requires learning how to do so, including recognizing that NPO means that - nothing by mouth. The nurse's advice was very appropriate, yet stepmother seems to be ignoring it. That's frightening, but also seems to suggest that she's determined to do things her way and feed him, even though he shouldn't have food at all.

Cyanosis is an immediate life threatening emergency. If she doesn't know how to suction or have suctioning equipment, or clear his airway, EMS might not be able to save him. (And suctioning is NOT for the faint hearted. I tried it once but couldn't do it.)



As to getting better through "trying", dysphagia can be an end stage factor. The alternatives to eating are, as explained to me three times (hospital, rehab, and palliative care consultations): intubation and feeding tube. Younger people can recover, but for older folks already in decline, curative options aren't available. Shaker and other exercises can help, but they can also fatigue someone older and in poor health already.



From what I read, your father would be better off with hospice than palliative care, which is a form of comfort care for chronic medical conditions but which doesn't address end of life measures per se, as hospice does.

(I'm breaking this up into two posts b/c it's getting so long.)
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He can't swallow and the liquid stays in his mouth....
I am surprised that the Palliative care hasn't told her its time for hospice. Not being able to swallow is a sign Hospice is needed. Having him to therapy has to be awful for him. Do the Palliative people know he broke his leg? I ask this because my Mom had therapy a couple of times. Once I was asked questions about her physically the next time they didn't bother I had to tell them. Mom had broken her shoulder years before and was not able to reach that arm over her head. She also suffered from neuropathy in her ankles. Important thing to know when having therapy.

How can she work with him this sick. Not sure how Palliative care works but Hospice someone has to be there 24/7. Doesn't have to be her could be an aide. I know Hospice only has an aide for bathing and a nurse a few days a week. Constant care is not provided.

I think you r being nice here. I think this woman is controlling. You said you had a good relationship with Dad until she moved him away. And talking about money to your kids...a no no. All you can do is try again to see Dad. Tell her how much you appreciate what she is doing. Lay it on thick but let her negative comments roll off your back. Your there for Dad. Once he is gone, you owe this woman nothing.
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Tom
I’m so sorry you can’t visit with your dad or speak with him over the phone.
Your step mom is likely so worn out she can’t see the trees for the bushes. I’m sorry your dad has to hear her unfortunate choice of words that I’m sure she thinks are to “encourage” him. She’s probably scared of losing his income as well as scared of losing him.
A good friend of mine called me one day from an airport. She was crying so hard. I couldn’t imagine what was wrong. Her dad was dying and his wife of about five years had moved him to Florida. They had all lived in Ohio.
He was unable to respond and the wife was a screaming banshee when the doctors or nurses said anything about his condition in front of my friend. “I’m the wife! I’m the wife” she would scream. “She’s not even his real daughter “
My friend had been raised by her dad and legally adopted after she was grown. She was totally crushed at the way her relationship had ended but had to accept that her dad set it all up and there was nothing she could do.
When she left she knew it was the last time she would see her dad and that she would not be advised of his burial or his estate. Her mom had died years earlier and her dad seemed to fall madly in love with this woman who was soon wearing her mothers jewelry and shutting her out.
Life can be very hard sometimes. We have to remember to make each day count. Come back here to vent. You are wise to honor your dad’s choices even when they are so hard.
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blannie, I could not agree with you move!
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Tom, I'm sure it is so hard for you and your siblings to see your dad in this shape. It sounds like you've done all that you can to assure your stepmom that you're not second-guessing her care, that you just want to see your dad. It sounds like she's struggling with both denial about your dad's condition and worry about finances. And she isn't making good decisions (like hospice which is fully covered and palliative care which isn't).

I have a very good friend who's mom was dying of cancer. Her dad was in complete denial and kept trying to get the mom to walk again, even though there was no way that was ever happening. When she went on hospice, he didn't want her to have the usual morphine/Ativan combo, because it would allow her to sleep (instead of being awake and agitated). He wanted her awake so she could listen to him. He was a very, very selfish man. He loved her but in a very self-centered way.

The thing I kept telling my friend was that there really wasn't anything she could do. This was between her mom and dad. And her mom chose her dad while they were both young and healthy. He was always a very selfish man. Your stepmom is probably the same as she's always been with your dad. There's just not much if anything you can do to change that dynamic after 15 years of marriage. It's really, really sad, but just don't make yourself crazy trying to change something that you can't change. I would just try to stay in touch with your dad as best you can and continue to offer sympathy and support to your stepmom. It's possible at some point she'll want your help, but until then, just do the best you can to take care of yourself.
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It’s such a long story but I swear I do Not share my opinion on his care other than he gets great care at home and as long as she can do it that’s wonderful. I only said hospice at home cuz dr says he is appropriate and she constantly tells us and my kids even that she spends all her Money and still has to work because of your grandpa and that “I don’t wanna pay another dime’ - who says that to grandkids and I do understand financial worries let me tell you.
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Oh and I completely agree he gets much better care at home. Muchhhhh compared to the skilled care in January! Ug! This is much much better. She knows we think that. Money is constant talk for her and I just know home hospice is paid by Medicare part A at 100% and Palliative care is not... it’s covered some but not like hospice and if he had hospice i pray it’s inhome
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Thanks for input! He is 77. I have not disagreed with her POA decisions for the most part. I’m grateful he is able to be in his own home. He has good care and palliative care is not all that much different than hospice. Unfortunately I am not in a position to help out financially due to chronic health issues myself - heart failure.. just not the stage of his and not same cause -bad valve started my road and endocarditis. I live 2 hours away and have just wanted to be respectful and ask when it is convenient, what I can do to help - sit with him, give her a break, clean, grocery shop, anything to help. I do not want stress for her because I do know and am grateful for the care she gives to him. My siblings and I just wanted to be able to hear what the medical team was recommending and what next steps were. She has lied a few times - such as at hospital when pouring liquids in mouth when he was not alert and nurse came to us and said he’s not supposed to be taking fluids by mouth for now because his swallowing test showed he was holding it in mouth and when swallow can go in lungs which is what caused the aspiration pneumonia. I didn’t tell her nurse said because I would never want nurse in trouble but dr came and told her/us and she was not happy he gave any medical info in front of us. Was good info for us to know as well I thought. There were couple other incidents. Maybe it’s just denial and she not seeing the shape he is in? He can’t move himself, roll over, can’t really hold a cup cuz just inset strong enough. He gurgles but don’t know if he’s back to full diet yet cuz she won’t say. She insists he eat and drink... the part that makes me angry is calling him lazy and telling him he always has been - that ship has sailed. The horrible look he gets when she does that is sad. I just want to spend Some time with him and don’t want cause stress by just showing up. I have told her how grateful I am that he has good care at home and for all she is doing, She has hired a caretaker for some of the time. She tells us that she has to keep working because she has to pay for his care. Believe me, I have medical bills to my ears so I know how much it racks up and fast. No, she’s not my mom. My mom was married 38 yrs to him, they divorced and he has been married to his wife I’m thinking 15 yrs at most. It really doesn’t both me that they r married. My moms remarried too. My Dad moved 2 hrs away when they got married and we haven’t seen him as much as we should have. He used to b part of our every single day life and now just few times a year. My family has never been invited there. It’s weird history that’s not helping I’m sure. I really AM grateful and tell her a lot thank u and the things I know she does for him everyday...
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Maybe she is afraid of your reaction and insisting he be on hospice? You sound like you have very definite opinions on how dad should be cared for. None of us, especially the hands on caregivers, want to be told we are doing things wrong or how to do things better. Would you be able to visit dad without sharing opinions on his care and making the situation more stressful than it is already? What can you do today to support step mom that will also help her?
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Tom, how old is your Dad?

I'm wondering if his wife is fearful that if you see your Dad that you will try to force her into admitting him into nursing care. You say his wife so I am assuming she is not your biological Mother. If you want to see him I don't see how she can physically stop you barring a restraining order. POA does not mean she can stop your Dad from seeing his children if he wants to. Don't phone. Drive over there if you can.
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