My father is declining in his ability to take care of himself while living with me and I am feeling extremely overwhelmed by all of the responsibilities that I have and am feeling very desperate for help but am having a lot issues with getting help or even in home care because my father is very stubborn and will not accept help or acknowledge the fact that he’s having some trouble with certain things. I have reached out to my county’s Older Adults Family Services and have spoken with a social worker who had me pass the phone to my father after our conversation because she told me that she needed my fathers consent to recommend help for him and asked him if he felt that he needed help at home he then responded with no and then said that since he said no she can’t help us and then recommend a couple of caregiver support groups. I hung up the phone feeling very disenchanted. I’ve gotten occupational, speech and physical therapy for my dad to help him better take care of himself but they have not proven to be effective. I am very on top of all of his medications and try to gently urge him the best I can without upsetting him to take a shower or wash his clothes and bedsheets and brush his teeth but he refuses most of the time or tells me that he will do it and never does. This is becoming unbearable and I am extremely worried about my fathers quality of life as well as mine. I also have taken on all of his financials have a POA and am the representative payee of his social security as my father cannot manage his financials anymore. I’m not sure where to go from here I am so exhausted of doing everything myself and am feeling that I’ve hit a brick wall. I would really appreciate any suggestions or at the very least kind words I am only 30 years and have been dealing with this for the past 3 years. I lost my mother to Frontal Lobe Dementia 6 years ago which was obviously very traumatic so this experience feels like it’s just extra extra terrible because I just went through this. I am also engaged to be married in the midst’s of all of this and have put off getting married because of the fear and guilt of leaving my dad and am extremely worried that I’m never going to be able to get married because I can’t get help for my dad.
Then you call APS asking about resources for a man who has been deemed incompetent with Dementia so can no longer make informed choices. And you need help caring for him.
The other options are an Assisted living if he can afford it. If not, LTC with Medicaid paying for the majority of his care, his SS paying the rest.
Another choice would be Medicaid in home care. At 30 you need to get on with ur life. The next 35 years will be the ones counted towards SS. These are your earning years. As you get older its going to be harder to get a job with no experience.
Make your own life now while you have the chance. I speak from experience.
If you need help making this decision for your life going forward it is time to grasp that it IS your decision, and it is coming. You will have to make it and live with it, whichever you decide. You may want to consider the counseling of a Licensed Social Worker who specializes in life change passages, and in dealing with them. Remember, the decision whether to have the life you were born to have, or to sacrifice your own life to your father is difficult to make, but is solely your own decision. I am wishing you good luck.
If you have not already done so, on the Medicare website you can establish an online account for your father so that you can track his Medicare charges. I'm not sure but I think you should be able to find that CPT code if you look back to when he was diagnosed.
You already have POA, so that is good. You can begin to use it to make decisions that work for both you and your dad. If you want to get married, you are going to have to make changes. Your father's needs are not more important than your own. Caregiving must work for everyone involved.
Your dad lives in your home. You need in-home help. As POA, you have the authority to help him with his Instrumental Activities of Daily Living (ADLs). You also have the authority to bring in help such as housekeeping, meal prep, laundry. Your father may feel more comfortable with a male home health attendant. Pay for these services using his funds. Look at it as in lieu of him paying you rent to live there.
You must stop asking your father if he needs help. You see that he needs help with his medication and activities of daily living (ADLs) such as brushing his teeth. Learn to say something like "Dad, I need help and have scheduled an appointment with an agency to get us help so that you can continue to live here. I need your cooperation. If you refuse, I can't continue."
Either way, you need to prepare for when his needs exceed your ability to keep him safe in your home. Look at his budget and start looking at memory places where he can live within his budget. It's best to start looking at placement now before a major crisis happens.
You're only 30 years old. Do you work?
He stopped taking showers because he was afraid he would fall (Parkinson’s). After a week or so, he was given two choices of people who were going to help him shower: me or his friend - he went with his best friend. No arguing, no saying no, just a choice. We used it every time we knew he would balk about something, which was a lot!
The last time was the biggest - the choice was 24 hr in home care (and the cost that came with it) or long term care. He agreed to long term care because he knew that he could only afford a few months of in home care. But he insists he’s only going until he gets strong enough to come home again and live alone.
I'm assuming you are also your father's medical PoA. If you believe your father has any cognitive decline, create a "therapeutic fib" to schedule an exam for him with his doctor (tell him Medicare or SS now requires an annual physical). When there present a pre-written note to discretely hand to the doc or staff asking to perform a cognitive exam because you have some concerns. They will gladly do this, they did it for me w/my MIL. IF your father does have decline it will now be in his medical records and you can go about his business with the PoA. This means you can call back Family Services without your father present and request an assessment for in-home help. He may still resist outside help, but you must insist on it. This may buy you some time.
You can hire in-home help from an agency, or outsource some tasks (like housekeeping, cooking, laundry, etc) but HE must pay for this, never you. This may also buy you some time. FYI hiring people privately makes him/you an employer and and you must comply with your states tax withholding laws. My own opinion is to stay away from private hiring -- it is a crap-shoot and can cause more headaches than it's worth, even if it is less expensive.
Ultimately, he will need care in a facility community. You will need to research your options. Make sure they accept Medicaid and have provide a continuum of care (like AL to MC/LTC to hospice) so he can stay in the same place. He may require Medicaid to get into a facility now. You will need to ask social services if your state provides aid for AL (I think it's called an elder waiver). Many states only provide 100% aid for LTC/MC and hospice. If he has assets more than SS, a car and a home you may want to invest in a consult with an estate planning elder law attorney who is knowledgeable in Medicaid. If he has been gifting you money or you are joint on any of his bank accounts, this can cause problems in Medicaid qualification. State lookback periods can be from 2.5 to 5 years.
Your life now comes first, don't put it on hold any longer. It is not wrong to do so. I wish you much success, and a solution that brings you peace in your heart.
It sounds like it's time to find the nicest Assisted Living place your father can afford and place him there. That way he can get the help he needs and you can get on with your life, and continue to be his daughter and not his caregiver. You deserve a life too you know? You are way too young to have to take on all these responsibilities. So get your father situated in a facility and you get to planning your wedding. Wishing you the best.
God bless you girl for taking such good care of your Dad.
I am curious as to whether or not your Dad has been properly diagnosed by a Geriatrician? If not, seek a Geriatrician!
Sounds like Dad has at the very least, Dementia if not Alzheimer's.
If that's the case, you as POA have the responsibility to make sure he is in an appropriate place for his current diagnosis. As POA, you need a diagnosis that substantiates your legal right to intervene.
There is no shame in placing him in Assisted living or Memory care!
He may give push back in the beginning, but will soon assimilate!
This is exactly what these facilities are designed for.
Truth is that not all of us are able to care for our elderly LOs in our homes.
Sending you prayers and (((hugs)))!
I will say that you might approach this differently by asking him how he sees what is going on and how he thinks things will go in the future. My FIL kept saying they could not move from their house, but when I asked him a version of the 5 questions posed by Atul Gawande in the book Being Mortal, he had no way to answer but it made him think and got him to accept reality. Prior to that, I had been telling him what to do but this approach helped and started a dialogue.
See All Answers