Follow
Share

About 4 months ago my 79 yrs dad took my mom who'd had a stroke (totally unable to move or speak!) home from rehab (that didn't) to be her primary (only) caregiver. Most people would've put her in a place given her condition but he wouldn't hear of it. He has respite care come for 4 hours twice a month and a nurse comes about every 2-3 days to check the huge pressure sore on her bottom. I live about an hour away and try to visit once or twice a week. But I don't know what to do when I get there. If I try to help in any way I get spoken to sharply. The kitchen is always nasty and I am not allowed to clean it (or make food). I am not to clean other parts of the house either. If I make a move to do something for mom (wash hair, rub feet) he gets on me like I'm going to hurt her or mess up his plans/work with her and I have to stop, shout to explain and then I am usually "allowed". Dad is very hard of hearing but I had to give up on helping him make needed phone calls because he would call again or forget what I'd told him leading to more confusion for everyone. He doesn't shower her because the bath aide was stopped and with the way he speaks to me I'm not going to subject myself to helping him with that stressful task in a small space when I can't just walk away. I suggested that he pay respite care come help him with this but so far, no. A hundred other little things too, he says the bed is too soft for her but doesn't make needed calls to get another one after I've showed him who to call, he puts dirty diapers on the floor, leaves them for hours and washes his diaper hands into the dish water, runs the TV with volume off/cc on because he can't hear it (her hearing is fine). So I am left struggling uncomfortably in this hostile, need-saturated, hands-tied environment trying to think of stories to share with mom, sitting with her and finding things we can enjoy listening to. I've been keeping visits short, to save myself, but then feel horrible that I can't be with mom more as she must be suffering terribly trapped in her broken body. And then I have to leave her with (and in the care of) the one who "chases" me out. I also imagine that nurses and others coming into the home must think I'm an awful daughter (only child) because they never see that I do anything to help at all. I am upset for quite some time after each visit...most of the time I just wish she die already. Am I doing this right?

So sorry about your Mom. But a lot of stress has been lifted.

Stick by your guns when it comes to Dad. I get he will not be easy to deal with. Remember, you don't have to physically care for him.
Helpful Answer (1)
Reply to JoAnn29
Report

Home
I am thankful that your mom is at peace. I know it was very hard to see her in such need of care. May many happy memories return to you and bring you comfort.
Helpful Answer (1)
Reply to 97yroldmom
Report

Thought a little update might be in order. After the Nov. 19 surgery did not take Mom was sent to a big city hospital for a 2nd procedure and kept there for 14 days where they used a team approach to take care of several issues. Mom did go home again with Dad after that and things have been going a little better. Start of the year he arranged for care giver to come once a week, sometimes twice, for 4 hours since with her kept in bed so much more (as she should have been all along, imo) he can't go anywhere. This past week an MRI revealed infection in the bone so Mom is back in hospital and I will hopefully know more about next steps later this week.
Helpful Answer (2)
Reply to HomeisnotHere
Report
HomeisnotHere Mar 27, 2020
A final update on my mom. She was in this 2nd hospital for one week, during which IV antibiotics were started, then she was transfered to SNF to finish them since there is no reasonable way to do this at home. Dad tried. She lasted at SNF for 1 week before she fell out of bed during a change and was taken to a 3rd hospital. Dad then told me she'd been ruled unable to swallow when she was first assessed at SNF. I believe she had another stroke between 2nd hospital discharge and SNF assessment. SNF had him sign a waiver to allow him to feed her anyway. Hospital was having none of the that and palliative care team strongly suggested that she be NPO and allowed to die. Dad was having none of that, so put her on IV nutrition. Hospital was successful in starting and maintaining her pain medication. After about 2 weeks she became unresponsive. She died about a month after admission from pneumonia and two other causes on March 4th, 2020. My dad was at her side. So glad Jesus took her when he did and that for now, my dad can take care of himself.
(0)
Report
See 1 more reply
I’m glad you have the doctor who did the procedure to discuss this with. We’ll hold on to hope that it gets the ball rolling!
Helpful Answer (1)
Reply to anonymous979634
Report

Home, you've made progress!!!

Glad they put mom under. Keep in touch with this doc and ask him to have a word with social services department. He can document the bedsore far better than us mere mortals!!

((((Hugs))))))
Helpful Answer (0)
Reply to BarbBrooklyn
Report

Home: big (((((hugs))))))). Hope the appointment today went well. Keep in touch. We care!!
Helpful Answer (0)
Reply to BarbBrooklyn
Report
HomeisnotHere Nov 19, 2019
They didn't begin the surgery until 4pm west coast time but did use a general to put her totally under. Thank God. As they were getting her ready I voiced concerns about if his care could be causing this specific issue and netted a visit from social services. That was a total bust she was mind-made-up, judgemental and in a hurry (and to my knowledge never saw the now giant sore) but I think I may have gotten an in with the doctor who did the procedure. And my father gave verbal consent to him to talk to me!
(3)
Report
Are you doing this right? I don’t think it’s about doing it right but rather doing the very best you can do. By this standard, you’re doing a lot of things right under extremely difficult circumstances. There is no manual for how to deal with these situations, so go easy on yourself.

What I surmise from this is that your mother is medically fragile and that the bulk of her care is dependent on your father who is physically and mentally not equipped for the task. You have repeatedly tried to assist but it’s met with total resistance. It’s my opinion, and please tell me if I’m overstepping, but this requires intervention. Your father won’t listen to you but perhaps you might consider an anonymous complaint to APS. No one wants to do that, but it may be what needs to happen.

With my aunt, I had a tough time. She was living in filth, not eating properly, and refusing the home health care that she was allowed. Wouldn’t let me clean or anything. Her doctor refused to acknowledge there was a problem and the nurses that visited for wound care just did what they were there to do and walked away. What ended up happening is that she had a mild stroke, fell, and broke her hip. She never got to go back home after that. And this is my fear for your parents, that something will go horribly wrong before there is intervention. Sometimes that’s how it has to happen but maybe a good APS investigator would recognize that your dad is in way over his head and something needs to be done.

Final thing, please don’t worry about what the nurses and others that come into the home think of you. They have no right to judge. They are mandatory reporters and can be held legally responsible for not reporting what may be considered neglect. Again, I don’t believe your father is intentionally negligent in your mother’s care. But it does sound like he is not capable of providing the care she needs.

No matter what, I’m so sorry for what you and your parents are going through. Huge hugs and let us know how you’re doing.
Helpful Answer (2)
Reply to anonymous979634
Report
HomeisnotHere Nov 18, 2019
My hubby is where you are, just let things run their course. But I'm really having a hard time and maybe that's just what it is. I've had APS visit and nurses and therapists come and go often. APS signed off on it and as far as I know no other professional has filed a new report with them. Visitors come often and 3 relatives have come to stay for a week or so. This second group tells me it's not good (Duh!) but the consensus seems to be he just need to hire help in the home which he refuses to do. If I hired and just sent someone I'd have to pay them which my hubby is NOT going to like (and may not even allow...why should we spend our retirement funds taking care of those that have their own investments?) and my father would throw them out or not let them help a jot, probably both. Thanks for the hugs, talking with you here helps.
(2)
Report
Home:

https://www.medicareinteractive.org/get-answers/medicare-covered-services/home-health-services/home-health-covered-services

Since your mom requires skilled nursing, she is also entitled to an aide for personal care for bathing, etc.

Can you email or fax a note to the doctor telling her how desperately these services are needed and how resistant and unskilled your dad is?
Helpful Answer (1)
Reply to BarbBrooklyn
Report

Home, how does he think the bedsore is NOT his fault?

It's the lack of repositioning that is causing the sore. It's the lack of knowledge in how to care for her.
What selfishness on his part!!

How afraid are you of your dad's anger? Are you more afraid if it than you are angry that your mother is being neglected?

Or are you resigned to the fact that your mom is better off dead at this point (I get that) and trying to get her more or better care is just going to prolong things?

I think hospice care is the answer to all the questions here. You need to get that ball rolling and the debridement appointment is the time and place to do that, I think.
Helpful Answer (4)
Reply to BarbBrooklyn
Report

Yes Barb I remember "Two Sparrows in a Hurricane". (Breaks your heart).

To keep Mom at home where Dad can care for her is a natural feeling. Draw the curtains, just us two, keep the world out. But it's so often not a one-man job.

Wound debridement procedure may be the opportunity for change (for better care).

Home, can you attend the clinic/hospital in person? Bring a letter. Write down EXACTLY what's going on. If not, call & speak to Nurse Unit Manager. Email letter direct to NUM. Having this information in writing may help.

Short bullet points regarding her situation. Eg:
*Dad is sole carer
*2x nurse visits 1 hour/week
*Severe bed sore requiring wound vac & debridement
*No bathing aids
*Air mattress being used but
*Insufficient turning/repositioning
*Dad resistant to outside help
*Dad resistant to my help
Use CountryMouse's phrase *unintentional neglect*

Ask for their Social Worker to get involved. Keep stressing *she needs better care*.

Explain to Dad he doesn't need to be a lone soldier in this, he needs the support of a squadron (or whatever metaphor appropriate for him).
Helpful Answer (3)
Reply to Beatty
Report
HomeisnotHere Nov 18, 2019
Thanks for putting it in such black and white terms. I am trying to tread carefully but think I this "low point" may be a good time to make a move. Your bullet points may be a help to me. I also need to talk to the gal that comes for respite care 2x/month and get her take on it. Gather my resources and proceed slowly and carefully...
(1)
Report
Home, my cousins were in a similar situation to yours. Mentally I'll ( PTSD from WWII) and deme ted incle insisted he could care for my aunt with CHF and other comorbidities. The pinnacle of this situation was when aunt broke her hip and uncle dragged her around on a throw rug for 3 days. When family discovered this and 911 was called, Uncle attracted the EMTs who were trying to "take his wife from him". Aftwr several months of rehab in a facility, Aunt willingly returned to this home situation.

My cousin at this point insisted that 24/7 aides be hired. Uncle frequently fired them, but they knew to simply hang out until Uncle calmed down.

Can you make a deal with dad? X number of paid aide hours for dressing, bathing?
Helpful Answer (1)
Reply to BarbBrooklyn
Report

How paralyzed is your mom? Can she use a yes/no communication board?

Can she use a Picture Exchange Card System? (Aka PECS).
Helpful Answer (0)
Reply to BarbBrooklyn
Report
HomeisnotHere Nov 16, 2019
Nope, cards, pictures and pointing a total no go. SLP keeps on dropping her for non-participation. Sometimes she will try to say something. About once a month she memorably will give a phrase in context like that feels good (face being washed) or I'm good (after being asked how she is). She grimaces with pain (when being moved) and also to smile (we think, looks about the same) and raises her eyebrows sometimes when she is either understanding something or trying to communicate or connect with someone. She does not show anger or cry. Not being able to communicate with loved ones was on her list of things that would make life not worth living. I try to talk to her about my days, kids, house and life when I see her.
(2)
Report
Oy vey, what a terrible situation!

I feel somewhat better that she has a wound vac and a trained wound nurse; are you going to be able to go to the appointment for debridment of the bedsore on Monday?

I think I would ask for THAT doctor for help in dealing with this situation. And perhaps before the visit, contact the social work department at the hospital and ask for THEIR assistance in getting mom more/better care.

Please also make sure that your poor mother is given adequate pain relief (think morphine) before the procedure; don't let your father refuse that; debridement is VERY painful.

What are mom and dad's resources like? Does he have the funds to pay for more care? Mom needs more care than she is getting; that's why she has a bedsore. Can he be convinced that he's being a selfish pig in not getting her what she deserves at home?
Helpful Answer (1)
Reply to BarbBrooklyn
Report
HomeisnotHere Nov 16, 2019
I hadn't considered going to the appt. but perhaps I should at least "offer" to go with them. Although I'm frankly not sure what I'd get for my efforts. I might get to watch him give her no pain meds; he is very resistant to any kind of medication particularly for pain (he will not take for his own pain). Hopefully, the care team will just bundle it into procedure and not ask him! I have no power here. I can now understand why people walk away from family.

He refuses to honestly share with me specific money info. He did comment that since he has been home with her the account is getting larger due to not going shopping as often. Doesn't much matter how much he has, since he refuses to consider any options. Thinks it's going fine but for the sore which is not his fault.
(0)
Report
Home; Is there really a nurse who comes and checks on mom? Or is dad just telling you that?
Helpful Answer (4)
Reply to BarbBrooklyn
Report

So summing up, your very fragile, very ill mom is being cared for by your very unstable, very marginally functioning dad.

If you consider yourself totally alone or totally unable to step up in this very troubled situation, can you detach enough from what you observe during your visits to seek out someone whom you can pay to become involved and take charge?

If you know of a family lawyer, that person might be able to give you some useful guidance concerning the steps to take to get help for BOTH of your parents.

Your father’s yelling and threats, and your concerns about what ANYONE ELSE thinks are the very least important aspects of this potential tragedy.

Your mother needs wholistic care 24/7. It is very likely that such care could NEVER be provided for her at home.

Your father may need full time supervision and medication. What you have observed and are describing as quirky, unpleasant behavior MAY actually be dangerous and totally counterproductive to him and life threatening to your mother. The fact that he “wouldn’t hear of it” when full time residential care was recommended for a woman in your mother’s condition indicates the degree to which he may be detached from reality.

HAVE you had a response from APS? If not, give that another try. If you are affiliated with a religious group or have a nearby church/synagogue/mosque, get in touch with someone there.

It is TOTALLY UNDERSTANDABLE, and actually very healthy, that you u derstand that you need to save yourself, but you will feel better when you start doing SOMETHING, ANYTHING to change this situation that you are in.

Focus on “CHANGE” There are no good sweet pleasant perfect solutions in this, but focusing on changing the worst of what you’re dealing with to “improved” will help.
Helpful Answer (4)
Reply to AnnReid
Report
HomeisnotHere Nov 16, 2019
Yup, pretty much. Thanks for the last bit tho, I think may need that pinned to my forehead for a while...There are no perfect solutions just improved situations. Thanks.
(2)
Report
Your father believes that he is the best person to take care of your mother because of how much he loves her, and because rehab accomplished so little (arguable).

He believes that everyone else is incompetent (depends what you're expecting).

He believes that he can do it all (no, and QED - your mother is living in unsanitary conditions, with a huge pressure sore).

Your mother is suffering unintentional neglect. I note Barb's question about your last call to APS, and second it - what happened?

Your father probably isn't in the mood for debate or forward planning, but there are two elephant-sized questions. 1. What happens to your mother if he falls ill or is injured? 2. What will become of him once she is no longer with us?

If he won't address these issues, which are really two sides of the same coin to mix my metaphors, you can still give them some thought. This might be helpful in seeing what direction he might be led in by the combined efforts of you, his and your mother's healthcare team, and any social services professionals you can enlist in support too.
Helpful Answer (6)
Reply to Countrymouse
Report
HomeisnotHere Nov 16, 2019
First statement pretty much sums it up. What is QED? And yea, my circus includes two big elephants that are routinely brushed under the rug. To add another metaphor. However, in many ways I'm waiting for one of them to come out and step on this situation to be the catalyst for a big change. In many ways having my father become CLEARLY unable to care for her would be huge. And I am so ready for mom to go home for good. After that my father can do what he will with himself, at least for a time.
(0)
Report
For those who don't remember the "Two Sparrows in a Hurricane" post:

https://www.agingcare.com/questions/two-sparrows-in-a-hurricane-450760.htm?orderby=recent
Helpful Answer (1)
Reply to BarbBrooklyn
Report

Home, let me ask you this: have you ever been there when the nurse is there? How about you arrange to meet her there on her next visit and ask what her recommendations are for your mother's care?

Bedsores can kill. If your mother isn't being bathed and isnt being repositioned regularly, I fail so see how she won't develop more sores.

I think that your father (you said in your post over the summer that he has dementia?) is in way over his head and somehow, the system that ought to be protecting your mother is failing.

Is she on hospice? Are you averse to calling 911 to get the bedsore treatment ramped up and managed by a wound care doctor?
Helpful Answer (2)
Reply to BarbBrooklyn
Report
HomeisnotHere Nov 16, 2019
I have not been there when a nurse is there. Since he can't hear his phone ring they just stop by. The agency he has now came on board after I moved on from helping with calls so I haven't made contact with them. My dad is pretty good about giving out my number when they ask since it is an old ingrained habit as I am their only "next of kin". I figure they know where to find me. Not that I can do anything anyway.
PS Before stopping handling calls I set him up with a CaptionCall (delightful and totally free device!) which much to my disgust he had them install in a back bedroom. I think he uses it to get messages off then call folks back. Some have gotten wise to him and will just tell him when to call them.
(1)
Report
So, back in July, you wrote that home care nurse had refused to take the case and APS was called. What happened?
Helpful Answer (0)
Reply to BarbBrooklyn
Report
HomeisnotHere Nov 16, 2019
We got confused by double calls and waited for dr to re, re, represcribe it then got a new agency to start end of Aug. Yeah, he had her all to himself for 6 weeks while being investigated by APS... Not our best moment.
(0)
Report
Do you have any idea why the bath aide was stopped?

Are you in touch with your mom's doctor?
Helpful Answer (0)
Reply to BarbBrooklyn
Report
HomeisnotHere Nov 16, 2019
Per my dad, purpose of bath aide was to teach him how to bathe her at home and as such was a limited time offer. Don't know that she can shower now with wound vacuum anyway...

Yesterday I was able to work with a visitor (and an online video) to wash her hair (scalp was caked) while my dad was distracted with another guest.
(0)
Report
Stop worrying about what others think of you.

Your mom has a huge pressure sore on her backside? Who is treating that? Have you spoken to the home care nurse? She is the one who should be in contact with mom's doctor about ordering an alternating pressure air mattress.

It sounds as though your mother is not getting adequate care and that your father is either mentally ill or has dementia.

Have you considered calling APS to report your mother's lack of care?

I'm sorry that you're in such an untennable situation.
Helpful Answer (4)
Reply to BarbBrooklyn
Report
HomeisnotHere Nov 16, 2019
I don't suppose the nurses are really judging me, they are too busy and are dealing with him also. APS talked to me on phone for over an hour, visited the house for about the same amount of time, I imagine did other investigating, found no issues and closed the case about a month or so ago.

One of the nurses is a wound care nurse and dad also takes her to a wound care doctor. She has been on an air mattress for the purpose this whole time. I feel kinda like some of the wound care (have her lay down more often, offer Juven, night turning and position in bed) was neglected. He was told (and told) and had observed what to do in rehab but not sure if he was not able to mentally process or he just couldn't manage physically. He was upfront about needing nursing care to help with it but it's like he didn't (couldn't be made to) realize that his actions would be the difference. Or maybe this is how it would have unfolded anyway? Now that she has been given a vacuum machine (about 2 weeks ago) and is scheduled for surgery on Monday (to remove dead skin) it's like it's finally hit him and now wants to do everything he can for it. A little late.

I got nowhere fast with his doctor (an osteopath) and realized that she's the one that authorized him taking her home as she is also the rehab facility doctor. Or maybe none of us has any power of influence here? At that first appointment that I went to with them, she suggested he look at assisted living situations which was a hard no. She sees them both once a month and set him up with the wound care specialist after he took their own lift in and had her take a look at the wound probably in early September. I've seen no evidence that she is concerned about his mental state but perhaps she is gathering info at these monthly visits? She was totally confused by double calls and most of the reason for me stopping helping with that, so I haven't contacted her or her office since summer. And she hasn't called me.
(0)
Report
Ask a Question
Subscribe to
Our Newsletter