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I've posted here about my dad before, he is not the easiest person to deal with, extremely high maintenance. However over the past year or two he has taken a bad turn. He is now 84 with severe COPD (or so he says, more detail on that later). As of last year around this time, he refuses to walk that much except between the living room and the kitchen. Spends his days doing pretty much nothing, occasionally looking at his tablet and watching TV at night. My brother and I do help him out and he's not alone. But he will tell you that he's very lonely, well I'm sorry we can't be around him 24-7 and he's never left alone for long periods. He doesn't take his medicine regularly, is on oxygen 24-7 but it's obvious that he is miserable. I'm not sure what we can do for him if he's going to be unwilling to do so.


Prior to the pandemic, the VA wanted to send Hospice to the house to help him out, one requirement was that we would have to address his clutter. Of course he refused to cooperate with them. They did convince him to do the Tele-Medicine with them so he doesn't have to go to the VA hospital for checkups and etc. They sent a device that measures he oxygen saturation and his blood pressure and takes his weight. And after him using this device for awhile, I'm not sure if his COPD is a severe as he makes it sound. Granted we all have bad days, but I've noticed the oxygen saturation is anywhere from 89-100 percent. It varies from day to day, but I would say its around 95 and believe it or not his blood pressure is good. He also has cataracts, and the people at the VA aren't sure they can do the usual procedure because of his COPD.


One thing you should know about my dad is that he is the biggest baby when it comes to any form of discomfort and he is not the "pull yourself up by your own bootstraps" type of person. And he's also very demanding very high maintenance which makes it even more difficult. He has told me he doesn't feel that he's getting any sympathy from anyone in the family, unfortunately my mom passed 20 years ago from cancer. My brother who is in the house with us does help but he can be intolerant. And my sister who has her own house might as well be a ghost. The latest is he keeps talking about dying, I did convince him to call the VA and make an appointment with a therapist to see if they can help.


I'm not sure what we can do anymore

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I would like to Thank everyone for their input and advice in regard to my dad. We are starting to think that when he eventually gets out of the hospital, he will need to be put in assisted-living or home.

Unfortunately this morning has not taken a turn for the better. The hospital staff had to restrain him again. He broken his cell phone in half and has been extremely aggressive & hostile. He tore out his IV and all the sensors, they want to sedate him. And he is in no condition to be let out.
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Frustrated, I'd contact the social worker and request a geri-psych/neuro exam. If he has dementia, this is something you guys should know.
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So, after dad is done with the hospital, he should qualify for Rehab. Make sure (work with the discharge planner) that he goes somewhere that can turn into a permanent Long Term Care placement. Preferably one that will accept Medicaid after some period of private pay.

Just so you know, all hospitals start planning your discharge from the minute you are admitted.

Make sure that you are part of the process and that you are clear that he can't return "home".
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Frustrated100 Dec 2021
Thanks, good to know. From what I understand he's going to be there in the hospital for at least a week from what they indicated. And from what we've seen so far, he's being very difficult as usual. And he has been calling myself, my brother and my sister with odd statements and he doesn't sound like himself. So, I think whatever he has been put on is effecting his mind and etc.
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Hi Frustrated. OK, I understand the situation as well as the frustration.

The problem, as is often the problem when anyone moves in under their parents' roof, is that your leverage is very restricted. He won't take advantage of any of the available home health help, because he has you two under his roof, living in probably more than simple "clutter," and that's probably deliberate as he does not want anyone else involved. On top of this, he's being a Senior Brat by insisting that you two dedicate yourself even more to babying him, as you put it.

But you want help, right? That is why you posted here. To set boundaries, you have to have consequences and options of your own. The more dad feels like he can trample all over you because you'd be jobless and homeless otherwise, the more he will do it. I'd say figure out what that point is now, and demonstrate that for yourself, it's an OPTION to live with him, not a requirement for your survival.
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I have an update about my dad, he was taken to the hospital yesterday. The "rash" on his legs is called cellulitis and the VA doctors said he needed to go the hospital immediately. We also found out that along with the COPD, he has Congestive Heart Failure which is a result of the COPD. This explains some of what has been going on with him, like the inability to move around normally.
The ER staff indicate he will probably be there at least a week so they can get the cellulitis to clear up and he's going to go through a bunch of other tests, lungs, heart and etc. So far he's stable now, but not in the best of moods.
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PeggySue2020 Dec 2021
Wait. You said he was approved for hospice, but a hospitalization with full labs doesn't indicate he was. Do you mean that he got approved for aid and assistance and home health care help that he, your father, is rejecting?
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Your dad sounds like a real nightmare to deal with. It's a shame because he has children that want to help him but his behavior is pushing them away. I don't imagine telling him that would make much of a difference in his behavior. Do what you can and leave the rest because it seems there is no winning with him and even if you have a million percent it would not be enough. Good luck to you.
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Frustrated, it is very likely that your dad has developed bedsores on his backside.

I would see if your brother can have a look to verify, if not you must.

If he does, these are very painful and can be deadly if not treated.

They can also be a case of elder neglect if just left alone and not treated, so don't take no for an answer.

Things change quickly as we get elderly, he is probably having a difficult time, just from being sedentary you lose the ability to safely, comfortably be on your feet. Then take away your ability to get oxygen from a breath and yikes!

I have a cousin with COPD and he looks healthy, uses a blood oxygenation cellfood, so his levels stay around 95 but, if he mows the lawn or does physical activities, it is quite frightening to see. He gasps for breath, turns a bright red and sweats profusely. He is the pull yourself up kinda guy but, you really can see how much gumption it takes for him to keep on keeping on and he's 15 years younger then your dad.

Maybe it's time to get a visiting nurse?
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Frustrated100 Dec 2021
We are talking about either a nursing home or get a home health aid to come in. But you are correct, my dad is not a pull yourself up kinda guy. And yes, we have repeatedly told him that he needs to move around...even a little bit but he chooses to either argue or just ignore you.
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We've had a new development now, my dad is refusing to move around. Before yesterday at least he would move from the living room to the kitchen. As of yesterday he doesn't want to go to the kitchen as the chair in there is hurting his a**. He has declined a lot and just refuses to take care of himself even though he is capable of doing so. And now he has a flare up of what we believe to be shingles on his calves. Yes we know there is a vaccine for shingles but we aren't even sure thats what this is, but at least appears to be. We did take some pictures and sent it to his doctor but she hasn't responded yet. It is obvious that either he's going to need to go into a home or at least get a home health aid to help him out.
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sp19690 Dec 2021
Sounds like placing him is the bwtter solution espevially with his cluttered house. Who knows he may actually enjoy being around people and start doing more.
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You cannot fix the unfixable. Why bother trying?
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DAV is the Disabled Veterans organization. The VFW ( Veterans of Foreign Wars) is another one to call.
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Does your town have a VFW that serves food? Maybe take him out for a meal there. I know you said he doesn't want to leave his home but a VFW may feel more "friendly" to him. It's all an experiment -- doing this and saying that -- seeing what works and doesn't. I'm still in contact with a former long-term employee who is now 70 and was diagnosed with COPD about 8 years ago. It's no walk in the park. And your Dad is also very senior, so that adds to the mix. The care arrangement has to work for both parties or it isn't really working. This is why avoiding burnout is so important. Every day you will need to remind yourselves that you're not responsible for your Dad's happiness.
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Have you tried contacting the DAV? Possibly they have volunteers your dads age who could come visit him. It would give him someone to talk to, and some down time for you and your brother.
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Frustrated100 Dec 2021
What is DAV?
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OP, please correct me if more information is needed, but for now two early conclusions stand out.

1) You and brother both are living under dad's roof because unlike your sister, you don't have your own place.

2) Your father, despite having normal O2 sat (95 percent is normal), mobility enough to go on walks and def to adult day care, has been recommended to hospice, which va won't provide because his house is messy.

Which, apparently, being that he rules the roost, you can't do anything about.

I
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Frustrated100 Dec 2021
Yes we are but my dad can't be left to fend for himself anymore. After 3am last night where he fell out of his chair and could not get up off the floor just indicated a change is needed. I ended up calling 911 and they got him back up again. His O2 sat flutuates from day to day
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Thank you for your responses. Get him to go out of the house? Good luck with that one, he has not left the house is almost 2 years and that is by his own choosing. He claims he can't walk that far, even though he doctors have told him he has to move around. But chooses not to do so and apparently he once told my brother that if he treats himself like garbage that he will die faster. But all that is doing is making him more miserable than he is already.
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Daughterof1930 Dec 2021
Then his unhappiness is his choice. Honor that choice by leaving him to it. Sometimes there’s just no making things better
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As kindly as I can put it, you may very well be jumping through hoops trying to fix the unfixable. Whatever “happy” is for your dad may just be over. He’s experienced both loss and the deterioration of his abilities, that will change a person, make incentive for well being and positivity hard to find. My dad took a daily small dose of Zoloft his last few years, he called it his “attitude medicine” as it did help him be more positive. Getting dad out to meet some of his peers may help, like a senior center or even adult daycare. Don’t believe that his demands are your commands, don’t believe that you have to be a constant source of entertainment, and always care for your own needs. I hope you both find peace
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Ariadnee Dec 2021
So very true. The first caregiving I did was for my Mom. I jumped through enough hoops, that Ringling Brothers should've been knocking on my front door to come work for 'em!
This second stint of caregiving-bounderies are being set. Ya know, it's uncomfortable for me to do-but, it must, must be done for my own sanity, health, well being and to be in the best shape, frame of mind to deal with dementia and the complex caregiving involved.
As I've written elsewhere, my experience with my husband's dementia is now one of visiting his world. I've also noticed if I keep an even temper, he seems to (at least for now) be able to mirror my behavior. Of course that can/will change. The rotten thing about dementia, is there is nothing at all consistent with it. How I hope that research will untangle a tiny piece of this and give us a thread to hang onto and work with, when dementia is the diagnosis.
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One thing my Aunt told me, she is the last one left of her close peers and she is surrounded by her kids, grandkids and great grandkids and she is lonely. She is lonely for conversation with people her own age, the people she shared a history with and her life with my Uncle. Nothing can change the last two and only she can help the 1st. Same for your dad.

As Geaton said, try to find day programs that he can go be with people his own age. If he is really sick, ask the VA about VA facility placement. If he can spend time with others that have shared experiences, he might feel better. Then again, he might not. All you can do is find the best possible environment to help him solve his loneliness.

Just because he is high maintenance doesn't mean you have to prop that up.

What are his 02 levels when he is not on oxygen. Because you will get good readings if it is tested while on oxygen. How many liters is he getting? I would definitely tell his doctor, it can be dangerous to be on high oxygen for a long time, especially if you don't need it.
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Honestly, the most helpful thing you can do is have realistic expectations for yourself and work on having peace in your heart. Your family is going above and beyond for your dad by all standards. It will never be enough in his mind as he declines because he has not come to terms with reality and the process of aging and exiting. And you have enabled him to use guilting as a way to control all of you.

I think meds to help his mood will hopefully be helpful. Another may be to consider hiring a companion aid to take him places and distract him during the day (if this is something he can afford). It doesn't have to be every day, but 3 or 4 days a week. It is unrealistic for you and your siblings to orbit around him more and more. Just because he's used to being high maintenance doesn't mean he gets to remain that way. It will cause your family to burn out. You need to put up boundaries so all can maintain their mental and emotional health as this journey with him moves forward. He won't like it, but that is just too bad -- boundaries will be essential.

Does the VA have any day programs he can attend? Can he go to any adult day cares in your area? Or a community senior center with activities and events? He is 84 and even without COPD he maybe would still behave the same way. Also, please don't ever feel guilty -- you are doing your best and he just doesn't appreciate it.
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Isthisrealyreal Dec 2021
Precisely!
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