Caregiving my grandpa is killing my parents and I'm angry.

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Hello,

I live with my parents, who have been caregiving my elderly grandfather for 3 years. The difference in them reminds me of photos you see of the presidents before they enter and after they leave office; that is to say, they look drawn, tired, stressed, and grey.

My dad had a heart attack two years ago, and they both drink in the evenings to deal with the stress of caring for my grandfather full time, in addition to their jobs. My aunts and uncles don't even call, let alone help them shoulder this burden. My grandfather, though I love him, is so selfish and doesn't seem to care or comprehend that he is ruining their lives... And that's truly what's happening.

My grandfather has bedsores that bleed all over the carpet. He is incontinent, and can't do anything for himself. They have to dress, feed, shower, transport, and entertain them. My mom goes to a caregiver group, and my grandpa has many different doctors and specialists he sees for all his diagnoses. He takes 20 pills a day. And yet, he is in denial that a home would be the best option for everyone. It's like he doesn't care that he could kill my parents with this burden. It's so wrong!! I feel helpless because there's nothing I can do. I try to support my parents emotionally, but there is real anger building. My dad had his heart attack (and his doctor tells him this stress will kill him), and my mom is depressed, anxious, and I worry about the consequences on her health.

Sometimes I fantasize about calling elder services to have my grandpa forcibly removed. I feel guilty for wishing he would pass quickly, but just last month he was saying he wants to live to be 100: 12 more YEARS of this. My parents would surely die from the stress first. I'm so angry at my aunts and uncles for not helping my mom. I'm angry at my grandfather for being so selfish!!

My parents have done everything right, and they're not getting the support they need. A doctor needs to tell them and my grandpa that he needs to be in a home, now. He requires skilled nursing due to his bad condition. My mom says that she's trying to get everything in line to have him put in, but I don't know if it's just talk or if he will really be moved. I just want them to be happy and healthy, and I know that they're trying to do the right thing but it's going to kill them. It seems so wrong to have such a life foisted upon the best, most decent people in this world. And yes, I know it could be worse... It always could, you know? But that doesn't make me feel better on their behalf.

As for me, I have a full time job and I see a counselor every week. I'm mostly fine, but the stress on our home and family is very real. I'm not sure what I was hoping to accomplish with this post; maybe I just needed to rant, so thank you for that. It's really made me think about what will happen to my parents and even me when I get old. I will not put myself in the position my parents are. Moreover, I may not have kids, so what will happen to me?! I only pray that I will die quickly before my health degrades to the point of becoming dependent.

All of you caregivers out there are truly angels.

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Vstefans, so much of your comment resonated with me (and my parents, I shared this with them). I shared that same view that recognizing people and being able to converse about some things (on a surface level) made a person "sharp," but you really made so much sense with the way you described an aspect of dementia. And yes, he 100% has a spinal compression injury.

My parents have made the decision to move him. They told me it takes time, and he has an appointment tomorrow to have his mental state assessed. I guess there are hoops through which to jump because of the VA's involvement. Tonight was another rough night. My parents are breaking down quickly. The past few months have seen them really nosedive. My grandpa fell on Friday night and was fine, but the fire dept had to lift him, of course.

My mom cried most of the day and my dad went to bed early without dinner. I tried to help the situation as I could but they're both just so done. I can only hope that the transition goes quickly, getting him in somewhere. They have a local place in mind, but I think there's a waiting list. It's just so sad in this house. Their stress is tangible. I hope that they will both get counseling, and I will be glad to watch the animals and house for them so they can leave immediately for a week or whatever they need when they can.

I know that there is a lot of information about caregivers' burnout when you know where to look, but wow do I wish there were more public awareness about it. And support. This whole situation has really opened my eyes and I am going to find a way to honor it.
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OMG, Well, yes, he's not just eccentric - the things is he almost certainly has vascular dementia with loss of judgement, reasoning and empathy far more severe than memory or orientation loss. My mom, whose vascular dementia was very severe, still recognized familiar people up to the end, though she did lose track of time and her short-term memory was not good (she could retrieve some older information at times, but she could not tell what she wished or dreamed, or feared from what had actually been happening. Only people who realized more about her situation noticed that she was actually very confused, because she could coverse; you will find a lot of times recognizing peole and conversing a little results in a person being perceived as "sharp as a tack" even though nothing else they are doing makes any sense whatsoever. If the sores do not hurt and he has lost bladder and bowel function, he probably has a spinal cord compression injury somewhere. He might be too weak to stand. Of course, he may not realize that, and he may think he's asking for a minimal assist to get up after falling rather than asking for one or two people to lift 280 lbs. If he lands in the hospital again before you can arrange facility care, ask specifically to talk to social work and/or discharge planning and tell them that the care is too much for you at home and you need help telling him that and finding a place for him. They are probably assuming you want and plan to take him home again and don't know that his inability or unwillingness to comply is causing the recurrent problems. You hate taking choices away from people, but in this case, you have to be realistic and eliminate the choice of maintaining a status quo that is running your parents' health into the ground and not really benefiting him either. It is probably emotionally even harder for your parents to assume the authority role and gently and lovingly, but firmly refuse unreasonable demands. For their sake and his, though, they absolutely have to. He can't be permitted to refuse outside help AND stay in the home, and if he can't understand why that's the case, something has to be done along those lines anyways. My mom might have made it home with home health care and her good nosy neighbor, but she had it in her head that if outside agencies came in she had to feed and entertain them and she could not do that because she could not walk. The reality was I had gotten the house fixed up so she could have wheeled everywhere but she basically threw out three different people who I got to try to talk to her about home health - and it was her judgement and proneness to delirium that really made it impossible to return home alone as she really wanted.

I guess I just want to say anything I can possibly say to help your parents see that it is totally appropriate and not unkind or unloving for them stop trying to do the impossible, which is to provide full time care 24x7 to an incontinent, immobile, 280 lb adult on his unreasonable terms all by themselves.
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Vstefans, thank you so much for your reply.

My grandpa is about 280 lbs. Basically dead weight...he's fallen a few times and has demanded that my mom and I pick him up, even refusing to let me bring in the neighbor! Of course, I called 911 and they've had to have many EMTs get him up. I'm sure this is indicative of decreased cognition as well.

What's so frustrating is that he has seen so many geriatric doctors, wound specialists, hospital physicians, surgeons, cardiologists, etc and none of them are forcing the issue. They have kept him in the hospital for a few days, attempted surgeries for the pressure sores, prescribed antibiotics and special cushions and sleeping accommodations, and physical and occupational therapists, etc. In the end, they expect him to stand regularly (doesn't happen) and my parents to treat the sores at home. They're not bad right now, but his skin is permanently discolored. When they're bad, they're super deep and bloody. He says they cause no pain and seems to have no comprehension of how bad they are.

We have tried in home nursing. It comes down to him not wanting anyone but my family to help him. What's strange is that my mom says he has dementia as well, but he seems relatively lucid most of the time to me. Maybe a bit eccentric, but I thought that was because he's shut himself off from social interaction for so long. I didn't consider that he might not realize what he's doing because of the dementia. Thank you for that.

My mom is actually a forum member; that's how I knew to come here! I did send the link to my dad. He saw his doctor today who again warned him that he needs to deal with this situation before the stress kills him.
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Granddaughter, GF is at a minimum moderately cognitively impaired if he does not grasp that he cannot sit 24 x 7 and still live to be 100...or that his caregivers will die before he does if that were possible. Even if this were not the case, he would not have a right to demand this level of care at home from you and your parents. To top that off - if you do resort to calling in APS, they could possibly be in trouble for his pressure sores and soiling if he happens to have been incontinent when they see him; they could end up in court, they could end up on the list where it would limit them from ever being employed in certain caregiving occupations if that was a considerations. But if they can;t bring themselves to do what needs done, you might have to anyways, we understand.

I know there are people who feel like nursing facilities are for people whose families don't love them, and expect that is they love and care enough they can keep them at home til the end. But sometimes this does not work out and they have to learn the hard way that this assumption is wrong, and hoepfully others can help them get over the false guilt.

With all the doctors, there should be ONE who can look at the big picture and say what needs to be said. You don't say whether he is very large as in 20-250 lbs or 300 lbs plus, and whether you have lift equipment (that he probably does not want to use...) I would bet that he is diabetic for many years, with not very good control, and having progressive loss of reasoning power over time. Maybe the primary doc, maybe a geriatrician. You might need to prime them with what you have told us, so that GF and your parents don't showtime their way through it, pretending things are manageable, and the doc does not even get him up out of the chair to look at his bottom. You can reassure GF that you love him and will visit him and do anything to ease the worries about moving and being cared for by other than family - I'll assume that's why no home health nursing was mentioned - but you can't let him run the show. He is not capable now of making good decisions, whether he used to be or not; he does not understand why he should do anything difficult or uncomfortable that he does not feel like doing at any given moment. Let your parents get on here too maybe; it might help them see things in a different light.
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Freqflyer, you're right, I know. I don't think anyone would really want to be in a home. My parents want to make sure they find a good place for him, and I'll suggest taking him for a tour to set his mind at ease.

Hi babalou, oh that makes sense. Luckily the VA will subsidize certain ALs. This incontinent bowel was the first instance of that, but he has been urinating himself for months-years now. He (very reluctantly) goes to an adult daycare one morning a week. He was going three days/week but he hated it and refused to keep going. My mom is working with a social worker now to see what our options are.
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Al is Assisted Living. You need to get grandpa assessed; if he is incontinent of bowel, he needs a nursing home. His bedsores would be better treated in a facility as well.

Go to Medicare.gov and find nearbt nursing homes. Tour them. Find out what grandpas assets are and if he qualifies for Aid and Attendence. Click on the paying for care bar at the top for lots of information. Contact your local area agency on aging to find out what local resources exist, like adult day care.
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granddaugher84, regarding your Aunts and Uncles, please don't be angry at them. They could be using tough love ... maybe they all wanted your Grandfather to have been placed into a continuing care facility after your Grandmother had died but your mother didn't.... thus your Aunts and Uncles don't want to help because that would be only enabling your Grandfather to keep on staying with your parents.

As for your Grandfather not wanting to move to a continuing care facility, please remember his age... that generation thinks nursing homes are dark, dank, with unsmiling faces, horrible places... no wonder he never considers wanting to move. Too bad that generation refuses to even visit the places that are available... even my parents refuse to go there and the one we have in my area is like living in a resort, but my parents won't budge... [sigh].... I might move there myself :)
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Thank you Linda!! That's exactly what I'll do. My mom works on the weekends, and my dad during the week, so they're quite stuck as well. I'm so glad you were able to get your mom in a good place! And I can understand why your sister was worried she would pass first. What is an AL facility? Alternative living? Sorry, I'm not familiar with the forum language yet!
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gdd84, after years of splitting our mom's care (my sister and I), my sister could no longer continue and keep working fulltime too. She's not one to overdramatize, but truly believed she would pass before our mom if she continued. But I was not able to assume fulltime care either. Problem was by this time, we were both "stuck" - she was newly widowed and I knew I was in for an enormous struggle with my mom. It was my niece who helped us get the ball rolling. She did all sorts of research on AL facilities in my city, got it down to a short list, researched Aid and Attendance. Then she presented us with all sorts of info. I then visited facilities, got the list to three, my sister flew in and we made the decision. Moving our mom was quite rough but we got her in a safe, really nice place.

Maybe you could help by doing some research and legwork for them. Your folks are just in reactive mode, immersed in the day to day. There's a saying "when you're up to your butt in alligators, it's hard to remember the objective is to drain the swamp."
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Well, my grandpa had a quadruple bypass about 20-25 years ago, and while he healed, he began sleeping in a chair. He is a very large man. His butt is where the pressure sores are. He has arthritis, and is pretty stooped and very weak. He has worked with many therapists over his lifetime, but won't do any of the exercises. He gets angry with the therapists, and we have had a few refuse to work with him anymore because of this. The wound specialists told my mom that he needs to stand every hour to help the sores heal, but he won't do that either :(. It's such a mess, and reminds me of pushing a boulder uphill. It's easier for me to see, since I am more on the outside, physically and emotionally.

THANK YOU!

Yes, that is exactly what my mom says. I know she's grateful for me to see what's happening, because our family makes her feel insane with their lack of understanding. I mean, I get it; if I didn't witness it all firsthand, I wouldn't get it either. This pressure is intense though. Yes, do talk with your son. We can sense when our parents are going through something. Sometimes we will avoid talking about it because it's painful for us to see you struggling.
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