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?
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.
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.
Are you in touch with your mom's doctor?
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.
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?
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.
https://www.agingcare.com/questions/two-sparrows-in-a-hurricane-450760.htm?orderby=recent
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.
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.
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?
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.
Can she use a Picture Exchange Card System? (Aka PECS).
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?
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).
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.
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?
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.
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))))))
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.
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.