He has Parkinson’s Disease and vision problems that require more care than we can give him because we both have full time jobs. I have been looking at assisted living facilities for him over the last year but he fights me tooth and nail about moving out for his own safety and our concerns for his social and medical needs. I know he has it made with us (rent-free!) but he doesn’t think he has any issues. It is ruining our relationship with him and beginning to affect our relationship with each other. He thinks he can go to a senior apartment but he can’t live alone due to medication management issues and fall risks, as well as the fact he can’t drive. Should we try out the apartment thing and wait for a crisis to happen or stick to assisted living options? I wanted to travel to finally see my mom after a year and a half due to Covid but had to shell out $900 for respite care for my fil to do that. I can’t do that every time we go away and now that Covid restrictions are easing, we are going to want to start traveling again. I have been reading this forum for a while and appreciate the answers of those who have or are walking in our shoes. Thanks!
There are some Assisted Living set ups that have terrific efficiency apartment arrangements, pleasant dining rooms and common areas, and full activity programs, including trips out and scheduled visits to malls for shopping and kibitzing.
EVERYTHING has been ruined by Covid, but don’t give up. After he’s safe in a comfortable, well managed AL, you’ll be able to recover the previously comfortable relationship you knew with him in the past.
You have lost some of the balance you had before he became your full time responsibility. It is time for you and your husband to enjoy the benefits of your hard work. Balance is an important aspect of caregiving.
Good luck to you and your family.
That said, I will tell you that if my 94 year old mother had her druthers, she'd be living in her own home, with moderately advanced dementia, wheelchair bound, with afib, CHF, bad GERD, and all sorts of other issues too numerous to get into. She lives in Memory Care Assisted Living and has fallen 33x just since she's been transferred into the MC bldg in June of 2019!!! She has zero judgment making skills, zero ability to gauge what 'safety' looks like, and continuously 'leans over' to pick something up in her wheelchair and falls out, head first. If she was living with me, I'd have lost my mind long ago.
In my opinion, you've reached your coping limit with your FIL and he has to go to Assisted Living, NOT Independent Living. Why wait for a crisis to happen and THEN move him again out of IL and into AL when he should have been in AL all along? Each move creates confusion and chaos for all involved; you, him, everyone. Why postpone the inevitable? Let him know that you love him, but that you can no longer care for him at home, his needs have simply become too great for one person to manage. He needs a TEAM of people who work in shifts to manage his care; medications, food prep, help with activities of daily living *ADLs* (even if he doesn't need help now, he WILL with Parkinson's) showers, etc.
Lots of elders have a picture in their minds of the Little Shop of Horrors with regard to Assisted Living. The reality is something entirely different. Go scout out a few local ALFs and bring home some brochures. Give him a choice of which place he'd like to move into, not 'if' but 'when'. Let him know you'll be visiting often and calling often, but this is his opportunity to meet new friends and play cards, get socialized and start a new chapter of life. I made my intentions known with my parents from the get-go that I would not be caring for ANY elders in my home and I'm glad I did stick to my guns on that. It's not a crime or a sin, either..........nowhere is it written that 'children' have to give up OUR lives for seniors who made no arrangements for their own care after retirement.
He may surprise you and LOVE AL life! My mother did, before she went into Memory Care and her dementia took over her mind.
Wishing you the best of luck drawing boundaries with your FIL and sticking to them. Have fun on your travels!
Additionally, where is your husband in all of this? Is he in agreement with you (FIL needs placement) or his dad (everything is copacetic as it is right now)? I think I know where my money lies, considering your one statement "I have been looking at assisted living facilities for him over the last year but he fights me tooth and nail" - nothing in there about your husband.
Living rent free with you? Of course he's going to feel he has no issues! Why on Earth would he agree to move elsewhere that he has to pay, when he can live with you at no cost (other than YOUR sanity/life/marriage)? I'm betting you take care of all of his needs such as meals/laundry/cleaning, etc. to boot.
Your *hubby* has to be the one to step in and tell his dad that this arrangement doesn't work for you anymore, and he needs to go elsewhere - preferably AL. This shouldn't be on you to try and do on your own - that's not fair. If hubby is not seeing the demands that dad is making on your life, then go on strike "gee, honey, your dad needs dinner. What are you going to make for him? Gee, honey, your dad doesn't have any clean clothing - you're going to have to do his laundry" etc. Maybe if he gets a taste of his dad's needs, he'll get on board more quickly that his dad needs to be placed.
I really hope I'm wrong about your husband, and he's on board with what you need to do, it will make everything much easier on you if that's the case.
Good luck.
You don't mention what kind of funds he has available but he will definitely require MC and possibly LTC. Knowing this, you need to get him to a facility that you trust and that can provide 24 hr care for him as you all go down this ugly road.
Once he get's used to AL living (and he may never admit that he is used to it so get ready for that) you and Hubby can go back to being loving and caring visitors instead of quarreling overworked caregivers.
You should definitely not be paying his expenses. He must have some type of income even if it only a small social security check.
Remove yourself from across the table and sit beside him while he has a needs assessment. If he still wants an apartment, then it’s his decision and your husbands errands to run. I’m assuming he is competent to make his own decisions. Parkinsons is different for each person and he may be fine in an apartment with less expense than ALF. Again it depends on the person, the facility, the progression of the disease and what he has grown accustomed to.
Why did he move in to begin with? I can somewhat understand why he’s been there during the worst of COVID but for whatever reason it started out, hopefully that has resolved. If he and hubs are both dug in, I would take which ever path makes it easier to get him out.
Who has his POA?
https://www.medicare.org/articles/does-medicare-cover-respite-care/
OK, that’s just one thing on your list.
"a non-government website"
2) Under Medicare benefits for respite care section, it says:
"Original Medicare Part A covers respite care when it is a part of the recipient’s hospice care. For Medicare to pay for respite care, the patient must first meet Medicare’s requirements for hospice."
FIL isn't on hospice, at least I don't see any reference to it anywhere. It isn't enough to be on Medicare, you have to be on hospice care too.
When you can, check out various ALs. Get brochures. Ask a lot of questions (cost, services covered by the cost, care provided in the cost, what additional care might cost, etc.) Tours are good, if they are ready to restart those. You need to see, hear, smell, taste, touch to get the full picture. If/when they are fully "open", go without appt to wander the halls and chat with residents. Get a feel for each place. Narrow down the choices to those that you feel provide the right environment for FIL. Then take him there for a tour and free meal (my mother used to go to those all the time! I think she just wanted the free meal.) Alternative, if those you've narrowed down have respite care, use that place next and often (as others noted, HIS assets should be paying for this - it doesn't matter that it is allowing you freedom to visit your mother or whatever, it is for HIS care, therefore HIS dime!!!
Let him see these are not 4 walled cells/prisons. Most are much like apartments, but they have a dining area, laundry and cleaning service, activities, transportation to local area stores, malls, etc and PEOPLE he can socialize with. After his respite care, what did he think of the place(s) you've used? Did he make any comment? Did anyone ask how it was? Did anyone chat with staff to see how things went while he was there?
Like others noted, it does seem like this is all falling on your lap. Just leaving your husband out of the discussion might not say he isn't involved, but why are you running around gathering info, trying to convince FIL (he fights you)? If you are indeed holding the entire fort up (cooking, cleaning, laundry, toileting, bathing, etc), then you need to take a mini-vacation, go visit your mom and leave hubs with his dad. A week minimum, two would be better. If you come home and things were left undone (laundry, cleaning, etc), then you stand your ground until it is all done, but NOT by you! Sometimes it does take dumping all the responsibility into the other person's lap to make them see. He may be supportive, he may be minimally helpful, but if all this is on you, that needs to change. FIL isn't going to listen to you. He may not listen to his son, but it is NOT your job to do all this. You should be supporting hubs while HE manages everything.
There's a potential "what if" hanging there too... What if your mother needs your help? You certainly can't care for 2 yourself. If you had to go take care of her, who'd be caring for FIL?
He (FIL) had his time. It's your turn to enjoy some of the fun in life. You are still young enough and healthy enough to do that, do it NOW! We don't know what the future holds for us. If we hold off on all those dreams that we planned and saved for, real life could get in the way and prevent you from ever having that time together! It's not like he'd be abandoned. He would have good care, assistance, medication management, some social activity AND can still have visits from his son (and you.)
He may not like it, but he's had a more or less free ride for 2 years and is clueless as to how much it takes out of you. Get hubs on board - take that mini-vaca to mom's if needed, to get him onto the boat!!!
To preserve your relationship with FIL and hubby, it's time to have a gentle come to meeting with your FIL. But first, you and your husband need to sit and calmly get on the same page about your wants, desires etc. 1st should be the safety of FIL which will not be accomplished in a senior/IL apartment.
You (plural you) may want to contact Area on Aging and see if they will come out and do a needs assessment on FIL. If not them, then maybe his doc could do a needs assessment. Just let doc know ahead of time your goals of getting FIL into AL and out of your home. Then you can always blame the dr. for FIL not being able to live on his own.
Gently as possible you with hubby or hubby alone needs to sit with FIL and tell him why he needs to move - maybe make it more about the other people his age he can associate with and activities for him to participate in. But let him know as gently as possible that the living arrangements as they currently are, aren't working.
In the meantime, if not already being done - hire home aids to come in to care for dad - ON HIS DIME. Again dad should be paying for his retirement as you and your husband will need to pay for your retirement needs.
Remember, placing him in AL does not mean hubby is abandoning him and is not his caregiver, it just changes how he gives care. He will be Dad's advocate making sure he is getting what he needs - which first and foremost is SAFETY. You get to be dad's loving children again (even though you'll still also act as his parent from time to time).
Good luck and may you all get through these hard times with as little damage as possible to the relationships.
1 - Get him to a lawyer that specializes in family law while he is still mentally competent. Make sure he has a will, powers of attorney (medical and financial), and any other legal documents drawn up to give your authority to manage his affairs when his is no longer able to.
2 - Make an appointment with his primary care doctor to evaluate his medical problems and his mental competency. Do not be surprised if his doctor makes a referral to a neurologist for further evaluation and treatment.
3 - Start researching residential facilities that can "phase," move him into more care as he needs it. Check to make sure that the facility can help your FIL apply for Medicaid if needed. Also make sure that the facility will take Medicaid-dependent clients.
4 If FIL is mentally competent, explain that he can no longer continue to live with you. Explain that he needs to live someplace where there are others who can help him with his unique physical challenges. Let him know about the top 3 places that his resources can afford. Let him choose among them and help him to move. IF FIL is not mentally competent, then choose the facility that would most likely be a good fit for him. Make arrangements for him to move into his "new home".
Is it not worth putting him (terrible phrase) into a level of respite that can make an assessment of his needs over a four to six week period just to find out if your concerns are valid or maybe a little over cautious. I don't know what may be available for this. I suspect your concerns are completely valid, but it is always useful to have an outsider's assessment, it helps us to see if we are worrying too much or maybe we are actually not worrying enough. Obviously one cannot keep paying out for this type of thing, but you and your husband need some time, and FIL needs to see whether he can manage or not.
Just a thought. Hope you can work something out.
It is terribly hard watching a parent decline. It’s also hard on the caregivers who have to manage their loved ones needs as best as they possibly can.
Keep looking at facilities. As time goes by, he will need more care. You can start off in a nice assisted living facility and if his care becomes more than the facility can do, you will have to transfer him to a skilled nursing facility.
Best wishes to you and your family.
I don’t know why his SSI doesn’t help pay for his care or his respite! That seems strange to me. Is he saving it for his old age...lol!
I digress....your house, your rules. When something is affecting your marriage and relationships, it's time for a change. And the sooner the better so he can adapt to his new environment. Realize it will take him a minimum of 3-6 months to feel at home there and be happy. So be prepared for his negative reaction after moving and know that it’s typical.
AND please get POA for both financial and medical for someone before he loses his faculties and can’t sign it.
This is not easy. You will feel like the bad guy and others outside your home might interfere and tell you to keep him with you. Listen to your gut - your health and relationships are suffering. Your FIL might yell and give you a hard time, but stand your ground. Deep down he knows he needs help. And most importantly insure that he has all his estate paperwork in place.
Then take him to the nicest IL/ AL/MemoryCare/LTC complex that he can afford
Tour the IL/AL apartments. Explain what comes with each. Eat lunch there. Talk with some of the people. Some places have their activities schedule posted.
Then discuss.
It would be easier to be in the IL AL complex, as at least in my mom case they will move everything for you. But if he is willing to hire all the extra help he needs and you make clear YOU will not be all the extra help then at least he will be out of your house.
Senior apts and IL are private pay, but most AL are covered by LTC insurance.
As far as falling issues, You might put up a bar in the shower as most accidents/falls happen in the bathrooms.
As far as his meds are concerned, you should go over his meds with his Dr and see if there's any that he could be off from as most Seniors are on way too many med's that they really don't need.
Then figure out a way for him to take his meds like use a 1 or 2 wk Daily Med container and you or your husband fill it up ever week or two.
You really don't need to have to drive these days as he can call an Uber or find out about Senior Transportation.
Sone Senior Apartments offer trips to the grocery store, out to eat, ect.
He also has the option to have his groceries delivered and if he doesn't have a computer he can talk to check with The Blind Dept in your area and see what things they can help you with like wrist watches that tell you what time it is when you touch a button.
He probably should wear a First Alert in case of a Fall.
As far as his meals, sign him up for Meals on Wheels and sometimes it is a long wait but in the meantime, he can use easy microwaveable meals to cook in the microwave .
My Dad use to love his Jimmy Dean Breakfast Biscuits with meat egg and cheese.
Use all easy stuff like instant oatmeal, little pks of apple sauce and yogurt.
Your husband could even set up a Camera in his apartment to keep an eye on him anytime you want to check on him from your cell phone 24 7.
I used the Nest Camera, easy to set up.
He deffiently deserves a try at a Senior Apartment if that's what he wants.
It is a long long story of all the things that happened after that which I won't go into, but if I had it to do over again I would have chosen a place for her where she could have "aged in place"...in other words, where you could start with ILF but when the time came for AL, it would be there. And when the time came for increased assistance it would be there. And so on. DO YOUR HOMEWORK. ASK QUESTIONS. Don't fall for the first Senior living place that calls you. They aren't all the same. Remember, its a salesperson calling you.
Above all--do not "wait for a crisis to happen". because it WILL, eventually. That's setting your fil up to fail and worse, he will fail because of something (the disease) out of his control. Not fair to him, and when that crisis happens you will feel like a bomb got dropped on your life. Take proactive steps now (even if its touchy and hard to do), to keep his future as happy and safe as it can possibly be.
They can also get the ball rolling for Assisted Living. Best of luck, I think this will help smooth the way to a faster resolution.