Follow
Share

Hi all. This is my first post and I just wanted to introduce myself and my story. My parents are both 90 and live in their own home (they're about an hour away from me). Mom clearly has dementia which is getting worse all the time, and she takes medication for that. She also has very severe edema in her legs and lower body in general. She's on a diuretic, and has inflatable compressions stockings but they don't really get used. She doesn't really eat, very rarely gets up and sleeps in the same recliner she sits in during the day. She gets to the bathroom but we gave her a commode to use so she doesn't have to leave the room at night. She's had a number of falls in the past couple of years, some more serious than others, but only one involving a broken bone. She is extremely paranoid that we want to "take her house", and any attempt to suggest moving out is because we want to do that. I don't know how often she showers; I don't think she can keep track and I don't know if my dad knows either. Dad is extremely hard of hearing, basically deaf. I have to yell or write for him to understand. He walks, but has developed serious problems with his legs (peripheral vasculitus I think it's called) for which he is getting treatment, so he's getting much slower. He still has a license, but luckily he's learned he can't drive anywhere except into the center of their little town. He doesn't cook, except for simple microwavable things and isn't the cleaning type (old fashioned man). He also refuses to leave the house. After much to-do, we have a PCA coming in once a week for 4 hours, and occasional meals on wheels. It was pulling teeth to get them to accept even these things. When I told them both MOW would be starting, since he's deaf he didn't understand, when they first they showed up he yelled at them to go away and don't come back. They have friends in the area who bring them food and rides to Dr. appts. They have a laundry pick-up service, which my sibling arranged and they both also have med-alert bracelets which get used pretty regularly. Myself, I often mow their considerable sized lawn, help clean, shop, often bring meals, do a Dr. run sometimes and fix minor things around the house. I'm the one who arranged and PCA and MOW. My dad's ability to care for the house is waning considerably; he's really just going through the motions. They are very proud people, and my mother is either in denial or is just unaware of what's happening. They're unable to communicate with each other except for the most basic routine things. So as you can see they're in a pretty fragile spot. If it was only one of them, it would be more simple, but my dad is somewhat in control of the situation, feeling like he has to do everything by himself and make all the decisions. They refuse to even move in with my brother who has renovated his house to accommodate them. He won't even talk about it. So that's my situation! It's been very informative to read other people's stories on this forum. I can see that many people are going through situations that are much more severe than mine, but still it's stressful because it's only mine and my brother's family that really do anything; the other two siblings live far away and hardly ever call or ask about how things are going. Sorry that went on so long but thanks for listening!

Thanks everybody for your responses, it's been really illuminating to read through all of the discussions and questions here. So many people going through this too.
(0)
Report

To start with find an agency that can send caregivers to assist them with their daily needs and housework. Maybe start part time at first. You may know some people who use private caregivers. Send delivery groceries and move their medications to home delivery. Do as much online as you can for now. Ask their primary care doctor for a social worker to assist in finding home health care.
(2)
Report

Welcome to the forum. Vent anytime. Ask questions. Browse other posts. Lots of good info here on this site.

You will fit right in. You certainly have your hands full. I hope that you will find relief soon. Caregiving is the toughest job ever.
(1)
Report

#Me, too.... waiting for crisis.

Windyridge, it's over now, though I do feel bad for the recent loss of your dad.... praying for you; what will you do now?
(3)
Report

I’m glad you found the forum here. You’ll find loads of good advice and support. You’re among the many here that are often termed “waiting for the fall” being in the position of waiting for something rotten happen to force change. Not fun at all...
(3)
Report

Sounds like you certainly have a lot going on with both parents. Thankfully you at least have a brother that is on the same page as you regarding your parents. Unfortunately it sounds like you are going to have to wait until something bad happens to one or both of them, before they will agree to any changes in their living situation. In the mean time, make sure that you're getting all your ducks in a row, by making sure all POA's are in place and that they have a medical directive(living will) in place. That way when sh** does hit the fan(and it will), you guys will be prepared. Good luck and welcome.
(4)
Report

Hi Canonly

Been there done that... I had the same situation With my folks, stubborn, no reasoning, and all 12 hours away with no other family.

At each crisis I would make the drive, get the leaky ship afloat yet again and repeat in a few weeks. I think we tend to enable elders in unsafe situations because it’s so hard to ignore it and walk away. I was beginning to wonder if I’d outlive my folks.

Finally mom had a bad fall that put here in the hospital for a few days. I moved her directly to assited living and wrangled dad in a few days later. It was all a hot mess. They got used to the place eventually but never really accepted it. At least they didn’t die at home in a fire or from a fall on the kitchen floor. It was a case of making the least bad choice from a selection of bad choices. That’s just where this usually goes.

Mom died in 2018 and dad died just a few days ago.

You’ll get lots of support here. Many of us have gone through or are going through similar situations.
(4)
Report

Welcome. I am so glad you are here. Sounds like there is a lot here to deal with and you all are recognizing that. You may have questions in the future.
May I ask if anyone has medical POA for this couple who seem to have some control issues going along with serious medical issues? Because a sitdown with the doctor who is the main doc for this couple would help you going forward.
You mention the peripheral edema for Mom. That is right sided heart failure. Think of it as a weakening pump. Other than the diuretics there is little to do for it and it will worsen. You also mention the recliner sleeping. To me as a nurse it is my first clue that there may also be LEFT sided heart failure which is much more serious, fluid accumulating in the lungs (symptom not able to lay flat and breathe easily). This latter can actually kill quickly with what we call "flash pulmonary edema". It is unlikely your Dad would know to call for help. But then there may already be decisions in place for no heroic measures.
The Forum will be enormously helpful I think because many here are dealing with the same issues you are. I know you currently have no questions, and can see you are well informed of what is going on and have family support. All GOOD! Meanwhile just a big welcome!
(3)
Report

Welcome to the forum!
(2)
Report

Start a Discussion
Subscribe to
Our Newsletter