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JEinMD Asked June 2014

Angry and overwhelmed. What should I do?

My mother has been the primary care giver for my stepfather for more than 20 years. He has CHF, a clotting disorder, morbid obesity, and hidradenitis. 2 weeks ago, my mother had a stroke affecting her left frontal lobe. She now has lost the use of her right arm, difficulty swallowing, is unable to stand or walk on her own, difficulty completing tasks, and some personality changes. She is in acute rehab and is about to transition to sub-acute rehab for an undetermined amount of time. My stepfather is unable to cook, clean, do laundry, wash himself - or any other ADL without assistance. He also has wounds related to his hidradenitis (in a very personal area). For the first few days I was able to help him every day with breakfast and dinner and wound care (at least once if not twice daily) because I had time off from work. I am now back to work. (I work 12 hour shifts overnight 7pm - 7am, sometimes 3 to 5 days in a row). I can only make it to see him once every 2 to 3 days. He calls me many times a day and gets upset that I am not able to help him several times a day. He leaves me messages like
“I don’t know if I am taking the right medications, I tried to figure it out, but I’m not sure.”
“I am so weak, I hope you are coming to check on me soon.”
“I had to go to the bathroom. I don’t think I cleaned myself well.”
“All my bandages have fallen off. They need to be changed each day. I need you to come over as soon as you can.”
He is terrified of hospitals and has only been to see my mother twice. He continues to call her and tell her he needs her to come home and take care of him. I have tried to explain to him that when she comes home, she will need someone to care for her, but he doesn’t seem to believe that. I have even called the local VA hospital and left several messages with the social worker to try and get help for him, but have not received a response. I sometimes feel guilty that I can’t get there more often. I have been alternating days between helping him and visiting my mother. When I do go to help him, it involves about 2 hours of time. I do laundry, fix him a meal, clean up, give him a ‘bed bath’, clean his behind, and change his dressing (located behind his scrotum). He won’t even wash his own penis. I am very uncomfortable and this is bringing up some childhood issues that I would rather leave in the past. I am averaging 3 to 4 hours sleep. Last night, he actually called my mother and said “Your daughter (meaning me) needs to come here and change my bandages. I am a bloody mess and she won’t come. I haven’t eaten all day.” He is only concerned about himself. I am so angry I don’t want to help him at all anymore.

Me1000 Jun 2014
Im sorry your going through such a rough time, but you do need to worry about you. Everyone already gave you great advice but all I would add is if it were me, Id be calling the VA Home daily plus drop in as well as any services they can provide. Call every agency that's in your area, churches, even physical therapists( of course you may need a DR referral for one) they can check the home and your step dad for care or items needed and sometimes help get referrals/help quicker for home health aides/nursing or even VA. (and also for what your mom will need when she comes home.) Assisted living as suggested also sounds like a wonderful idea. Good luck

JEinMD Jun 2014
Thank you all for your kind and helpful words. He is retired military and has Tricare insurance. I called and left messages for his doctor and another one for the social worker. Unfortunately, I am my mother's only child and he never had children.

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JessieBelle Jun 2014
I agree with Eyerishlass. This is not a short-term problem that will right itself soon. It sounds like your step dad needs to be in assisted living, with your mother joining him when she completes rehab. Check around and see what facilities are available and what they can afford. They may not like it, but let them know you will not be able to take care of them, so it is something they need. If your step dad requires extreme care, a nursing home may be the only option. Good luck finding things that are just right for their circumstance. It isn't easy!

Eyerishlass Jun 2014
Who is going to care for your mom and stepfather when mom comes home? You can't do it all, you'll have a stroke yourself.

I think some huge life changes are going to have to be made here. This situation is a mess and your stepfather's lack of empathy for his wife is appalling. He's upset because he's being inconvenienced.

I too would sign off the computer and call a home healthcare agency right this minute and get some help in there. And mom and stepfather will have to pay for it.

GardenArtist Jun 2014
And gently mention to your mother that you're getting help for him so that his needs are attended, and so she doesn't worry. For him to burden her with misrepresentations and whining while she's trying to recover herslef is selfish, manipulative and uncaring.

But I have a feeling that her care for him all these years has enabled him to feel entitled. I wouldn't be surprised if he gives home care a rough time - they won't be manipulated by him.

GardenArtist Jun 2014
You need to get some help, and quickly. Even though it's a weekend, call his PCP, internist, geriatrician, and tell the answering services this is an emergency and you need a script for home health care - nurse, PT, OT and an aide.

Monday, call your local Meals on Wheels and get him set up for that.

It sounds as though there's a mix of helplessness (some of it feigned) as well as control on the part of your stepfather, but given his medical issues it's hard to separate how much of each is involved.

If he resists home care, you'll have to tell him that you just can't do it all and this is the best way to care for him, that these people are trained to do this, you're not, and you're putting his needs first.

Good luck. Act now to get the process started and don't let him drag you down emotionally.

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