What do you do when your step father, who is DPOA and Healthcare Proxy of your Mother, will not provide the proper level of care, will not accept help because of trust issues with everyone - family or hired, believes he knows best and is fine, has savings and will not hire any help, and will not take any input from family or friends who are in the healthcare field? My mother cannot care for herself, cannot shower, cannot get out of bed on her own, cannot use the bathroom and uses a bed pan, is a two person assist to get to a wheel chair (and there's only 1 person home) and is struggling to recover from a debilitating fall and sepsis 1 year ago. She is not given meds properly, the house is scary filthy, and she is not fed a healthy diet. As her adult children we live over 1 hour away, work full time, and spend 1 day a week there cleaning / helping to come back and find it a disaster in a couple of days. We are worried about him as well. He is burning out and not taking his own medication in the process. He has now told us not to touch anything and it is his home. We feel our hands are tied as we have no power to change anything. What do we do as we are at a loss and want to see our mother able to recover to a better quality of life if at all possible? To us this is not fair to her. He loves her deeply and wants to do this (and tries) but it is really a disaster with no outside help coming in.
That was last August. Last June dad, who staunchly refused all outside help and NH, lost his way home, drove 18 miles to neighboring town, and passed out due to low blood sugar. Got him into dementia NH with the help of his physician. He still doesn't know why he must stay there even though it has been explained numerous times.
As hard as it is, IMHO it is best to step back and wait for the incident and take action. Fortunately I was POA for both of them, which helps immensely.
Pray for help from above. It works. I'll also pray for you.
We, well me because I do the cooking, just started taking over a meal or 2 each week for them to heat up. My husband would bring the meals over & then help out with something small. As to the filthy house, we picked up / cleaned out one room at a time as gifts (birthday, Mother's Day, Father's Day, whatever). That prompted 1 SIL to wash their hair, which led to wash downs, with the next step being a full shower. However, for a full shower we needed to install grab bars, a hand-held shower head, a different type of shower chair (one that extended over both sides of the tub), and nicer fluffy towels -- again, as gifts.
It was VERY slow going but we kept at it little by little, not introducing too much at one time. A little over 2 months ago we got my 3 strong, strapping sons together and totally cleaned out 2 spare rooms, making 1 into a den & the other into a spare bedroom (for non-existent guests), using items from other areas of the house and gifting them a new TV & comforter. That really perked them up -- they are getting their home back! And made them more accepting of assistance.
Now we are at the step of a total house declutter/deep clean by professionals, which is scheduled for next week. SIL will have them are her house for 3 days while DH will be staying with & overseeing the house clean. And arranging for monthly cleaning as well.
That said, how long they can stay there and age in place is anyone's guess. Good luck!
Question 1: Has anyone ever hired private in home care for someone who has to slide board out of bed or to different chairs? And to coach them to do exercises? She cannot stand pivot. If so, what kind of agency or service was used?
The other question I had as a couple of people suggested calling APS or going for guardianship - have you ever called or done this and did it help? What was your experience and how did you approach?
#1. We do not go in and complain to them. We do ask what they most need/want done around house. We try to encourage them to get help and what type of help they may need. Rehab told them both the same. He is very tight with money but then spends on stuff that won't help. We don't critique this. We only observe and tread lightly and suggest. He's not a person you can just push. He wants to do it his way. We focus on safety things.
#2. We do understand and tell him we know this is very hard and he is trying his best. He is not a trusting person in general. Hard to explain here and yes we had as loving a relationship as we could as adult children. My mom and him have been married a few less years than I have but still many. We always got along. He was around before any of the grandkids (and many are now adults too)and he is their grandfather.
#3 My mother recognizes he struggles with this and almost changed the DPOA and Healthcare proxy that he holds when she was in rehab. She didn't because she was worried he wouldn't get involved and would be angry. At the end of the day she's competent to speak for herself. So gaining guardianship in my eyes is not an option unless she decides to make a change on her own. She has to want this too.
#4 We try to make suggestions and plant seeds and ideas on what could help. I have offered to pay for help! They say no. But it has been a year and she has already had to go back to rehab facility twice in that time and the seeds are not growing that were planted. Each time there's a promise they will do something different but they then change their mind. They have taken some advice over time but not too much. It's their money and they get to decide what to do with it. We have no idea what's left and quite honestly it's none of our business.
#5 The cleaning of the house is one thing but the General daily hygiene care, doing daily Exercises to strengthen and recover, getting her up everyday to her wheel chair(really need 2 people), getting her to the open shower they had built, meds on time and complete, and even healthy eating are concerns. She goes out for rehab only 2x per week as in house ended. This is where aid is needed for a few hours per day. They've tried some and then fired and assume all are the same so haven't hired again. We finally convinced them to get lifeline and that took months.
So I hope that clarifies some. Will keep you posted. I think continuing to ask what they need and planting seeds is going to be the best option at this point.
So, if you think her doctor would be of any help, see if there's a way to give that a try. Like your concern with the APS call, it won't be easy to get them to go, but if they do go perhaps doc can talk some "sense" into your step-father. Just contact doc first to give them a heads up, but request that you be left out of any discussions with mom and pop. Perhaps in your contact with him, suggest they call mom and say they need to schedule a follow-up appointment...
Yes, it can be stressful and it's not fun by any means, but your folks need help, as kids you seem unable to help them as much as they need and sometimes the outside world has to step in and step up.
Otherwise, you are sitting around waiting for the "big event" and trust me, it WILL happen. Then you'll have a mess of gargantuan proportions. A serious fall, a stroke, for either one of them would be beyond devastating.
Nobody wants to be the "bad guy" and bring up outside help or even the move to the ALF, or whatever---somebody has to get the backbone to get this dealt with. Trying to find care AFTER an "event" is SO MUCH harder than forestalling the event by moving the patient to safer surroundings.
IF you let mom and stepdad know they'll still be together, and others will be carrying a lot of the burdens for them, would that help?
You sound like many families--a lot of handwringing and worrying and not a lot of action. You'll be forced to take action, eventually. Why not at least attempt it now when they are more mobile and engaged?
Having said that from my high horse, I will be the first to admit I can't get my mom to do one single thing to make her life better/easier.
Good Luck.
It's sooo stressful to watch this, I know; I pray for you that a solution comes before a catastrophe.
Did you have his trust before things went south? Did you have a loving relationship with your stepfather through the years? I am wondering if the distrust is what we often see as people age or if this has always been part of your relationship. Have you been praising him and his efforts or just pointing out what is wrong, not good enough, not right. Have you said things like, "sit down, let me make you something to drink and you rest. You work so hard for mom and I am so thankful you came into her life."
When you come in do you take over or do you ask him what chores he doesn't like that you can take off his back? Are you treating him like a child in his own home, or like you want to be his partner in your mother's care? Change,if it happens, won't happen in one visit, it will take multiple visits. It is not easy to be patient, but it may provide at least part of what you want.
Do you know someone who does this kind of work who could come with you two or three times, intermittently over a five week period as your friend. He meets her, likes her then see if you can work her into the schedule for four hours once a week at midpoint of when you will be there. Then as things go well add another half day etc. you will need to pay her for the visits until the arrangement is formalized. Agree that it is just temporary until mom can get up and around and he doesn't have to carry everything on his shoulders.
Good luck. I hope it gets you at least part of what you want.
So you just have to let things play out and wait for that emergency when the whole situation changes to the extent that they have to listen to you. It's very common on these threads. It's nearly impossible as a loving child to stand by and watch the coming train wreck, but trying to intercede is often met with staunch resistance and doesn't get you anywhere but to more resistance from your parents (who will then act as a united front against you). Hugs - it's hard!
They refused outside help. Dutiful daughter ( my cousin brought groceries each week, did housecleaning).
My aunt fell, fracturing her hip. Uncle pulled her around the house on a throw rug for three days until my cousin showed up with groceries and called 911.
After 4 months of rehab, aunt insisted on going back home. Cousin at that point was able to bring in day time care, which uncle fired regularly.
My cousin is a very patient person and waited until her mom died to gain guardianship over my uncle. He lived for several years after his wife died, finally with proper psych meds, in a VA nh.
So yes, you have to wait for a crisis if you are dealing with obdurate folks.
You are at the point where feelings, tearing the family apart etc. are becoming secondary to the basic safety and welfare of these elders. It is so tough. I'm close to this with my folks, just hanging by a thread.
Be strong and good luck.
I'm sure that APS, like CPS, vary widely in their competencies and are ultimately only as good as their least competent employee.
Agencies like this exist for a reason. They got put in place because of situations like yours, where no amount of polite persuasion has worked. Please call them first thing in the AM.
I'm so sorry that you are going through this.