My father is in his 80s with vascular Parkinson's and heart conditions, diabetes & other health problems. I am an only child and my mom passed away years ago. He is also a hoarder. I am a single mom with a 2 year old and we live nearby. He is in the hospital but will be coming home soon. Bc of his hoarding he has made it nearly impossible for me to have my son over to his home. The only time I can get anything done over there ( clean & throw away things) is when he is in the hospital . After the last visit when he didn't thank me for spending days cleaning his room and bathroom ( horrible conditions) I have only just seen the bedroom again in the past few days and it brought me to tears he has been sleeping on a mattress with no sheets on it . There is no reason why he should do that ! I don't understand it. There is dried urine in the mattress and carpet, feces in tbe bathroom ... Really bad. Now, of course I will not let him return to this I will obviously be getting him a new bed or seeing about possibly renting a hospital bed, am really not sure yet. I don't think he will be home for a few weeks. My biggest concern is taking care of him when he gets home though. I know this sounds terrible but I feel extremely uncomfortable bathing or helping him in the bathroom or anything related to that. I am happy to help with anything else. I found this forum bc it seems to many women are able to do these things for their parents and be fine with it. I may have felt different if it was my mother but I am not even sure. To hire nurses is extremely expenses I have heard. Is there anyone who has been in s situation like this and can give me some advice. I feel so guilty and bad for feeling like this and I don't know why. My father does own his home and has substantial money in investments but he would never want to spend money on round the clock nurses. It's also not possible for me and my son to live with him due to the condition of his house . ( esp with. A toddler and sharing the one full bathroom would be impossible ) any advice would be appreciated..... He does have Medicare and supplement ghi plan but as far as home Heath care - they will come and take his blood pressure , but nothing as far as meals, bathing , etc. I am not sure how I am going to be able to lead my own life with my son, as I don't have any family to help me. Am not sure if I posted In the correct area. Thanks, Monica
Don't feel guilty about not wanting to do the intimate care - some can, some can't. Please. please, please discuss your dad's post discharge care with professionals.
And stick to your guns when talking with the hospital staff. Take pictures of his home to show them the conditions he is living under. Thay will assist with finding appropriate care for dad.
Here are some comments from another thread
from vstefans who is an md. - "AT A MINIMUM, there needs to be an OT home eval to see if it can be made safer. You would think the rehab team or at least the d/c planner and social worker would be trying to help make sure there was a feasible plan in place "
from jeannegibbs - cared for her spouse at home through about 10 years of LBD and hlps care for her mother who is in an NH. "you can certainly make and enforce decisions for yourself. "I am not going to become full-time hands-on caregiver for my mother" is one decision you can make. As Vstefans advises, make sure everyone involved in Mom's discharge plans knows explicitly what your decisions about yourself are. "
Monica you - you need to look ahead as well. Your dad will only decline - and need more and more care. His home is not hygienic and you have a
And look - harsh truth here again - vascular Parkinsonism is absolutely not "waist down" - it is part and parcel of a vascular dementia, and it is progressive in all aspects. It is absoluetly not just that he can't get to the bathroon. This type of dementia affects judgement and empathy before it affects memory, and unlike Alzheimer's, long term memory will be relatively preserved. I am sorry, but people with good judgement do not live with feces and urine everywhere, are not unable to sequence the steps involved in putting sheets on a mattress or fail to realize that sheets are a necessity, and do not do things that drive their loved ones away and undercut their only means of support.
I am an only child too. So, things that needed to happen had to wait for me to understand and accept what had to be done, too. I actually wrote in a diary at one point that I did not understand what my Mom wanted because it seemed so impossible and frustrating to reason with her - that was before I realized it was because though in casual conversation people could think she was "sharp as a tack" - what she said did not make sense because it did not make sense; she had lost enough of her reasoning powers, that she could not be expected to make reasonable plans or decisions. As much as I wanted to respect what she said she wanted, when it was not possible I had to stop trying to do it and feel guilty if I could not.
Talk to the hospital social worker. Maybe even bring pictures from the home, as embarassing as it might seem. Find out what is available and possible, including exactly how much aide care you could get; sometimes eldercare waivers of different types are available. If after thinking it all through and learning more, you really want him to go back home, make sure it will really work, don't just assume it will all work out because you love him, which you obviously do. Moving in with him is probably something that should not be on the table. Him moving in with you is not likely to work out very well either to be honest.
You are going to need POAs both medical and financial, almost certainly - you may even find out that the finances are in more disarray than you'd suspect. Strongly consider getting an eldercare attorney or at least an estate planner involved to help with this.
It sounds like there are multiple health issues. If he is in the hospital, then rehab you may hve some time to check around for ideas. If his health is serious enough, he may qualify for hospice and then get a home health aide 5 Xs a week while on hospice.
If you do help with bathing, there are VERY large adult size wipes that are sold . Perhaps you can use them to wash his extremities, chest and back. Then you could hand him one for him to do his private areas.
If you have access to his finances, hire someone to help with the clean up. With a 2 year old and a parent in the hospital, you have enough on your plate.
No siblings, my mother died about 10 years and that is when he stopped taking care of himself. Yes I do have access to his finances. When he was in the hospital a few years back he gave me access because I needed to pay his bills. So that is good:
he has vascular parking son so it's waste down and he is a bit forgetful at times but not dementia. He has numerous health problems. The parkingsons makes it very difficult to get to the bathroom in time and that is what I think has been happening . Not to be graphic but the feces was more or less on and around toilet. I am not sure if he has been able to climb into the bathtub to shower bc his walking is so bad. (The vascular parkingsons is waist down only), also has diabetes, gout ( which I don't know much about but I think it's something he has not gotten for a long time), very overweight, history of smoking and high blood pressure.
I don't think he will be able to afford a nursing home. And I don't know if I have the heart to give up on trying to help. He does have some rails in the bathroom and things like that to hold on to since he took care of my mother in the home until the day she died....
I did read something about having a written legal document so that you can get paid by a parent to be a caregiver in that the irs will exempt it from being a gift if it is worded properly . Do you know anything about that?