Hello everyone, first – I am grateful to have found this site early on. Here is a semi quick back story:
I am 29, my father passed away in April of this year. My mom went into ER the next day and my fiancé and I planned the funeral, and since then my mom’s health has progressively gotten a bit worse. She has a wide series of health problems including stage 3 kidney failure, lung disease, congestive heart failure, fibromyalgia, pulmonary heart disease. Much of this she has had since I was a child but has gotten much worse over the years. She almost passed away several weeks ago and had to have an emergency colon resection surgery. Thankfully the surgery went very well, but the recovery for her will be long. It is my greatest hope of course that she recovers completely. I am concerned as she can already only drive 20 miles at a time alone, she cannot walk for extended periods of time, be without oxygen. She eats badly and has so much stuff in her house it literally scares me, much of which was my fathers and we are still trying to figure out how to get rid of it all. It is basically organized hoarding. She is usually mentally ‘there’ but does have moments of what is similar to dementia, generally when her blood pressure drops (it drops very low – coma low - randomly due to myriad of health problems). She is in rehab right now and has days when she will walk and do what is asked of her, and days where she will not eat or get out of bed. I plan to help her for a week once she is out of the hospital, but she lives 45 minutes away, the rehab center is an hour away, and I feel guilty saying this – but I already feel myself getting burned out (I have been visiting her 3x /week, missing work, calling daily, cleaning the house/taking care of the bills, etc. on top of dealing with my own personal matters). I don’t mind doing these things, but I fear that as things get worse I will be expected to take care of her an increasing amount, as that expectation has already been proclaimed in semi subtle ways by other family members.
I am getting married next year and we would like to buy a house, possibly move eventually, travel more. I want to eventually have a child. I have a brother who lives in another state, he plans to fly down to help for a week as well, but he has no intention of moving to Florida, and I would not expect him to. I am requesting advice to those who have already been down this road, are there any tips or resources I should look into? Does anyone have advice as to what I need to do and be cautious of? How do I prevent losing my life over this while ensuring hers is comfortable? How can I get rid of all this crap (there is SO much)!? I want nothing other than what is best for my mother, but want to be careful that I do not sacrifice my life. My goal is to find a healthy balance so that I have neither resentment nor guilt; although perhaps that is naïve?
Thanks so much!
Don't jeopardize your job over this (you wrote that you are already missing work). Maybe the time to take action is before she leaves the rehab?
You deserve a life. You are looking ahead to marriage, buying a house, having a child at some point...all of this can be in jeopardy if you let your mother take the lead. Don't do it!
with different health problems. One of the questions the hospital asks in the
1st week, is, "Does he have anyone who can stay with him until he recovers"
This is a weighted question. It really means, we want to free up beds and staff,
and we are quite happy to have you put your life on hold for weeks nusing and
doing everything for him, even down to emptying piddle bottles for him, which I did when out of kindness, i said I would look after him, when they asked the question ,"does he have anyone who can stay with him"
Dad of course is pushing to get home and is quite happy for me to wait on him hand and foot.
So this time when he fell and broke the big lower bone on his leg, I was
waiting for the question from the hospital, and when they asked the question, I had steeled myself to not feel guilty or mean, and said straight out," no."
It turns out he spent another 5weeks in hospital,needing quite a lot of care,and they organised transitional carers to come in, when he came home from hospital.
If I hadnt stood my ground it would have all been left for me to worry about.
Dad wouldnt have carers come to the house before, but now he is very accepting of them coming. He has finally understood that I am not going to live with him
as he ages. But he kept talking like I was going to move in with him no matter what I said.
But since I dug my toes in,at the hospital on a few occasions refusing to
cave in to movng in to care for him, he seems to finally have realised, I mean what I say. The hospital staff also applies subtle and not so subtle pressure to
hand the responibility of his care over to me, but legally they couldnt send him home with noone to care for him. They even said because I held the Power of Attorney over his health, I was obligated to move in with him.
I said, well I can revoke that Power of Attorney and they ceased that argument.
Im sure they wouldnt say that a public guardian with Power of Attorney
over his health, had to move in with him.
I took him out yesterday for lunch at Sizzlers and to get his groceries, now he can walk with a wheelie walker, but is the carers who are doung his chors and caring
for him day n day out. Instead of me having to be there waiting on him every day
and really feeling angry and rsenting it.
Oh how I wished I would have found the Aging Care forum years ago, it would have prevented major burn out for me. I would have set boundaries from day one, instead of saying "yes" to anything my parents [in their 90's still living in their house] for anything they wanted. I thought I was being a good polite child.
I never realized until later that I was changing my lifestyle so that my parents could continue one with theirs. They were able to sleep at night while I was at my home wide awake worrying about everything. They were going to their doctor appointment... it felt like every week... while I had cancelled all of mine. My parents were decorating for Christmas while I had no energy and could care less about the holiday.
RARACA, so sorry for the loss of your father, and to read about the many health issues your Mom has had most of her life. As you read other forums on Aging Care, most important is to sent boundaries. Could your Mom afford to have caregivers come in daily to help her? Would Mom be agreeable to selling the house and downsizing? Maybe go into a senior apartment complex where she will make friends who will help looking out for each other?
As for the items in the house, there are nationwide haulers that one can hire to come in to help. Before hiring, when your brother comes to town, see if you, your fiance, and your brother can sort through as much as you can... but only if everyone focuses on the job. Some people are good at going through things, others get so very distracted. There are haulers who will take out good items that aren't needed and donate them, giving your Mom the donation receipt.
Now I wonder if your Mom wants all those things in the house? With some people, they feel more comfortable with a lot of stuff around them. Makes them feel safe. It will be interesting to see if both of your parents were gathers of things, not just your Dad.
I would be curious as to what is going on with your mom that is causing her to go to bed for days, refusing to eat and not acting right. Is she depressed, in pain, exhausted, dementia, etc. I'd try to spend enough time really observing what is going on with her.
It sounds like you are aware that she could need continued hands on care, not only of her person, but her finances, house, etc. Also, is she actually hoarding? I would follow up on questions about not only her physical health, but her mental health. That kind of decline can be very challenging for family members and can be extremely time consuming for family members.
I'd also discuss your mom's future. While she may very well fully recover, she might not, in which case, I'd like to know her desires for treatments, long term care, etc. As long as she's mentally sound, I'd discuss what her plans are regardless of what happens. I'd let her know what your plans are, so her expectations are not out of line.
It seems that in light of her situation, maintaining a house seems inconvenient.
That said, it is very nice of you and your brother to each take a week off to go and help your mother; however, I think you realize that that's not sustainable. It's great that you have Medical Power of Attorney; however, financial POA is just as important perhaps even more so if your mother recovers and long term care plans need to be made and paid for. You and your brother together need to figure out what your mom's financial situation is. Selling the house, for example, may be the only way to pay for your mom's long term care needs.
Likewise, the house: she can sell it or deed it to you but there is a 5-year medicaid look back, so be very sure you ask an attorney about this before selling it. About the clutter in the house: there are organizing companies and hoarding-helper companies in every state in the land. If you google "help with hoarder" you will see a huge range of options, from the light organizing of closets and clearing of spaces, to the full hauling-away companies, and including psychologists who specialize in it (doesn't sound like you need the extreme end of this, but I was glad to consult organizers who had experience with the elderly).
I would say to get all this set up as soon as you can, in consultation with your brother After it is all set, I would say that you and your fiance need to move out of town ad start your new lives!! (Some will disagree and say it is easier to handle things when you are in town; that does make sense in some situations. Others find it easier to get Mom settled and clear out. Personally I am so so so glad not to live nearby.)
You will have to decide; how is your fiance dealing with all this? Remember this is stressful on him too. GOOD LUCK and don't let anyone, not that cousin or your mom or anyone, guilt you into betraying your own life. Next time that cousin says that, turn with a tone of sweet delighted surprise, "OH Cousin Beth how NICE of you to volunteer for Mom to live with you! Thank you SO much!" Hahh. Seriously, let them make whatever remarks they want: if they are so unhappy with her situation they can invite her to live with them. Keep a clear eye on your own life and future, which is your first job.
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