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!
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!
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.
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?
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.
My dad passed almost 30 years ago, so it's only my mom. She was independent and living far away from all of us until her stroke in 2019. Before that, she was declining with all her health issues (she doesn't have dementia, alzheimers or any other memory condition/disease), but she has a lot of other debilitating problems. She was active for the most part, but had undiagnosed depression (that we all figured), plus we've come to accept her narcissism.
Mom stroked on the table during a heart valve replacement surgery; she was the lowest risk one can be for stroke, but it was twilight sedation, and she fell asleep on her back and stopped breathing because she has severe sleep apnea (that she has denied for years and wouldn't put on her 10 page list of medical conditions). So, they trached her asap thinking she was coding, and, in all the fuss, she stroked. The stroke was the straw that broke the camel's back in her declining stage of life. Even after 2 months of acute care facility rehab, the doctor's told her she can no longer live on her own. She was angry and unaccepting of this news. She turned nasty to EVERYONE and said and did things that was so out of character that we were appalled. I already had POAHC and POA financial, and she already had me executing those powers for years, so, my brothers and I decided that we were just going to move her, even though she was extremely against it. The independent apartment building would have kicked her out anyway; they were very strict about the criterion for living there. So, we bought her a plane ticket and went there and flew her and her bare essentials across the country to live with me, my hubby and our teenage son, and our college son. I had to arrange to move her things and clean the apt within 30 days after I gave them notice. Mom has no LT insurance and lives off SSI and a tiny pension benefit from my dad. Her apt was a HUD deal, so rent was based on income. Any decent AL facility was not financially feasible; we all knew she was a ripe candidate for abuse in a medcare/govt run facility because she becomes verbally abusive to caregivers herself.
She lived with us for about 3 weeks before being admitted to the hospital on suicide watch. Regular psych counseling and antidepressants since then have been a godsend. She's still an unhappy, negative, narcissistic person who wants to meet Jesus asap, but at least she's no longer suicidal or so incredibly abusive. Oh, she's still rude to family.
She'll be 91 next month. It's a challenge to get her to focus on quality of daily life instead of longevity because she thinks I just want her to live to 100. I love my mom, and if she passed today, I would grieve, but I would also be relieved that she AND us to be out of this miserable situation. I just keep responding to her wishes to die with "Well, Jesus will take you when He's good and ready to; until then, let's focus on the joy of today. " I think I say that outloud mostly for myself since Mom brushes it off with her tsk tsk and negative responses. It's hard being around someone so negative all the time. I have to proactively inject positive statements into the room like I'm banishing the devil or evil spirits.
I hope yall have a plan for your parents. Sounds like yall need one. Maybe taking small stealthy steps in the meantime is in order, like slowly getting rid of things. If you feel guilty, just rent a storage unit to put them. Talk with your siblings and come to a consensus on the plan. There's lots of options, and sounds like yall are going to be forced to strongarm your parents for their own good and safety. Yall line up your dominos, accommodating as many parental preferences as possible but considering the impact on yourselves more. We were caught off guard. At least yall see it coming.
Peace!