My dad has been living with me for the last few months, and my sisters and I, along with a care companion (Tu - Fr 230 - 7pm) are with him. He can no longer be alone because he gets scared and confused. This was a sudden down turn for him as he had been living along for the last several years and would kick you out around 2pm.. Now he has trouble sleeping at night, cannot run the remote control, struggles on what the next step is(i.e. pour coffee into cup, put in sugar, cream, stir), etc. He's 78 and diagnosed as moderate to early severe Alzheimer. I simply cannot take care of him with my full time job anymore. I've been late to work every morning as we run though the guilt trip of why do I go to work, why can't I just stay home (even though my other sister will be with him and yes he recognizes her), then when I come home he is just as upset I won't sit on the sofa with him for hours on end. I sit, have dinner with him chat, then I go to the gym, or read a book, etc. My trying to live life with him there is simply not working. He tells my sisters I'm mean and ignore him, which is simply not true, but I cannot meet whatever demand it is in his head. It makes him agitated, and I think he may do well in AL where he can meet people, be engaged more often and then I can do my normal Sunday, Monday, and Thursday visits (my sisters visit on Tues, Weds, Sat and Friday). I feel a ton of guilt but keeping him at the house is not an option any longer. He's also starting to require more attention than I can give. Any suggestions on how to help him transition would be greatly appreciated. Be Kind.
Who is his PoA? Is anyone? If he hasn't assigned a PoA to manage his finances and medical affairs, this will be a problem when trying to get him into a facility because unless he goes voluntarily, you can't make him and then if he does go, you can't force him to stay. So, make a morning appointment with a certified elder law attorney. This attorney will privately interview him to make sure he still has capacity to create this and other legal documents (and the bar is low, so don't assume he doesn't have capacity -- let the lawyer assess him). If he gets this done, make sure his diagnosis is in his medical records so that the PoA is active asap. Another method is to download the forms from Legalzoom,com or Rocketlawyer.com. They have attorneys online to answer questions and help through the process and is much less expensive and more convenient. I've done this method.
For now, if he has the money, add more in-home care and have a discussion with his doctor about meds for agitation and anxiety.
Start visiting facilities (he doesn't have to go nor agree to any of it). Then you can make up a "therapeutic fib" to get him to voluntarily go to facility (like, the house has a gas leak and we all have to go elsewhere until it's fixed.)
This plan all assumes he has the funds to pay for extra in-home care or AL or MC himself. If he doesn't then this is another challenge.
Being scared to be alone is called Shadowing, a common dementia behavior. It doesn't stop anytime soon. He needs meds to help calm him since he can no longer calm himself.
Teepa Snow has some very helpful videos about dementia and caregiving on YouTube. I found them very useful.
A "therapeutic fib" will be very helpful and the facility admins and staff are happy to play along (as they have seen it all).
That is to say you didn't cause this severe dementia, and you cannot fix it.
So the other G-word to try, given that the words we tell ourselves are so important, is "grief". That's what you are feeling as you observe what youR poor dad is going through, and know you can't fix it.
you stand helpless witness to his loss and torment. You are both grieving and confused.
I am so sorry, but the one thing that shouldn't be there is "guilt". You aren't god. You aren't a Saint. Not everything can be fixed and this must be endured.
I hope changing your way of looking at it will help.
Now on to your question.
As to your Dad telling you that you are mean?
I always tell people that we are meanest to those we live with. We trust them most. We know them most, and their soft spots, and when we're upset we know how to get their reaction.
Given that's normal for those of us with no challenges, imagine how easy it is for those suffering dementia.
Do begin to watch videos such as Teepa Snow about how to communicate with those with broken brains. Do know, as Oliver Sack's writings told us, they have a whole world. It just isn't OUR world and we cannot easily understand it, if at all.
I wish you the very best. You cannot do this yourself.
Placement occurs one step at a time. You need the power to do it via POA and documentation. You make the choice. You investigate the possibilities. You consider the assets. You make an appointment with an elder law attorney if/when needed.
You understand the adjustment time and adjustments that must be made for you both.
A day at a time, practice meditation a few minutes morning and night.
Be as patient with yourself as you are able. Be as patient with your Dad as you are able. And no one can ask more of you. A day at a time. A day at a time. A day at a time.
My heart goes out to you and I wish you so much luck. I am so very sorry you (or anyone else ) has to go through this. Know that you are not alone. Seek any support group online or anywhere else that you can find.
Are you POA? Have doctors said that Dad cannot live alone anymore, and will several attest to that?
If you are his POA (or guardian or conservator) then you can place him.
I agree with you. After a period of adjustment your father may well do better in care. My brother improved in care. I was told by staff that is often the norm for many. They are out of a home environment that they think they must control. They let go of control and let more be done for them. They are more easily guided. They will have companionship and activity. So it IS possible. But that sort of adjustment isn't always the case, and you cannot now predict it.
My Mom lived with me for almost 2 yrs. I placed her in an AL that took residents who had Dementia. The day she was to enter, someone watched Mom while we moved her furniture in. We put her in the car and thats when we told her she was going to a new apartment where she would make new friends. If u think this would not work, you may need to tell him when u get there. Maybe ask his doctor for something to keep him calm. I would not stay long. Get him to his room maybe sit awhile. Ask that when u leave a aide takes over. Or bring him back to the common area and have an aide distract him and leave. Its like taking a toddler to their first day at Daycare. Like with a child, you give them a kiss and say "I will see u later" and walk away. I don't believe in that not see them for a week or more. But, I don't think you need to spend hours with them. My Mom was 5 min up the street from my home so I stopped in for no more than a half hour during the day. She acclimated very easily so no scenes. If you find you going upsets him, its OK to cut the visit short and skip a day or two or more. You need to allow the aides do their jobs. He needs to learn to rely on them. It may take him acwhile to adjust.
When it came time to move my father-in-law out of independent living at the senior community, my husband (his dad's DPOA) and I toured the assisted living part ourselves. There were two rooms available. The following day my husband took his dad to see both rooms and coaxed a preference out of him, which was hard enough given that FIL has moderate dementia but not Alzheimer's. We were gentle but firm when FIL tried to stall and threw up road blocks. The move was made less than a month later in one day. We visited but allowed the staff to get him used to his new surroundings.
https://seniorsathome.jfcs.org/moving-into-a-memory-care-community/
Based on your comment with added information about dad's limited abilities and that he's 7 years into an Alzheimer's diagnosis, it seems that Memory Care Assisted Living is the proper environment for him. Regular AL is too confusing due to having too many choices, kitchens in the apartments, and lots more independence. Memory Care is a much smaller, shrunken down world for the elder where they get fewer choices, fewer gadgets to deal with, no way to get lost, no ability to wander outside or out of the building, etc. Once dementia progresses, they need a smaller world in order to thrive. Just make sure the suite doors LOCK or residents will wander into one another's spaces and borrow things constantly.
Best of luck to you.
I think that your visitation plan is a bit too aggressive. Believe me, you will not want to be visiting quite that much. It's recommended to give them some time to adjust as well. Or they live there and remain dependent on you which is not how this is supposed to go. I go once a week. Even that feels like a lot in my busy life but that's my goal. Sometimes twice, sometimes less if there is sickness, etc. Just be flexible and do not feel like someone needs to be there every single day because that is not an actual need.
The first place to start is dealing with your guilt and realize what is running your thought patterns and interrupt them (with reality / clarity / focus - and acknowledging that you feel sad / bad / even guilty equalled to knowing you are doing what is in his best interest (and yours). You know that you cannot continue on as you are.
* You certainly 'stop' the morning conversations which are making you late to work. Ask yourself why are you sitting there trying to convince him of something? This is where you start - understanding that this is a re-occurring cycle leading nowhere but emotional distress to both of you, plus you are late to work. You need to realize that you must set boundaries (of care, how long you visit / attend to his needs on a daily basis) and that it'll NEVER be enough for him.
Changing your behavior will feel awkward if not difficult because you have not been asserting yourself / taking charge of the situation. You are allowing him, a person with dementia, to control the situation.
Once you realize this, you will give yourself choices on what to do and how to do it.
How do you deal with these morning 'conversations' ?
If he starts in / talks to you about you leaving for work, you say:
"I am sad too that I need to leave you and go to work.
However XXX will be here XXX and take care of you. (add in whatever he may like, a game, lunch, going outside).
I will be home later today and we'll xxx (play a game, watch tv together), say anything that is a 'hook' that you'll be back and doing something fun together.
THEN YOU ACTUALLY LEAVE.
You do not sit down and have a chat.
You make this 'somewhat' quick as you are leaving.
Give him a hug and a kiss, look in his eyes and tell him you love him and you'll see him later.
You need to be-come aware that YOU matter too - your energy and needs MATTER. If you do not feel you matter, no one else can 'give this' awareness or quality (self-esteem, self-worth, self-respect) to you. It is something you need to develop yourself. It is a process. The key is feeling all that you feel and letting the feelings flow since you acknowledge them.
With this said, you are asking about support with the transition of moving him to a facility - which is where he needs to go for 24/7 care (and good that you reached this conclusion / decision. I am sure it wasn't / isn't easy for you).
I believe your questions is "How do I talk to him about moving" ____________
- You do not expect him to understand the 'why' of the need for him to move.
- You do not 'try' to explain the situation (he won't get it and certainly will reject anything to do with moving / leaving you / his home. It will only bring up fear.
- You realize that he is scared and doesn't have the cognitive capacity to understand.
- You tell him whatever will keep him calm. i.e., it is temporary while we get the house repaired ... get your room painted. It doesn't matter what you tell him as long as he will be more willing to go than not / or otherwise.
Question: Do you take him out now for rides? If you do, start doing more of this so when he does actually move into a facility, to him, it will be 'just' another ride.
- You never argue with someone with dementia. You learn how to appease them to keep them calm, i.e., offer. reflective listening (to a degree): "I understand you feel xxx" - then you stop, smile and hold his hand. You do not explain nor argue.
* I often say to my current client: Okay. Oh. Yes, I understand.
- Get the support you need, even if short term therapy. This is a major transition for you too. It hurts, it is hard, he is your dad and he is declining. Give yourself room to explore your grief.
Gena / Touch Matters
I would also recommend that you consider not visiting him as frequently as you and your sister do now, at least to start. He will need to acclimate to his new surroundings as best he can and that can be difficult to do if he associates you with living somewhere else. That will all depend on where he is in disease progression.
These are suggestions that I was given by Alzheimer/Dementia professionals and it worked for us.
She went from there to a rehab facility. SIL didn't share all this with DH as he was traveling a lot and she thought she could handle it all.
Then HUGE MISTAKE happened: SIL decided to take her back home and do in home Hospice as it was determined she had only a few weeks to live. SIL made the call to take her home alone--didn't tell her brothers until after the fact.
Well, MIL's in home for a few weeks and DH and his YS are helping MIL brush her teeth and she looks out the bathroom window and says "well, this place isn't so bad". Uh oh. She didn't even realize she'd been home for weeks.
At that point, they could have still moved her, but being the most stubborn people in the world, decided they'd do in home Hospice. I mean, how could THAT go wrong?
DH has said, many times, "we should have taken mom to a NH last year when she thought she WAS in one."
Her 2-3 week Hospice is now entering year 2 and no end in sight. She has become angry, violent and mean to everyone. Fires CG's on the reg. Falls down a lot. Can't use the phone and can barely use an IPAD for communication.
The last year has been hellish. All us in-laws are sick to death of the time and energy this is taking on our spouses. Mine took early retirement to care for his mom--resulting in severe depression for him.
The time to enter a NH is when it is apparent that your LO is simply not capable of being cooperative/decent/kind to the people who care for them. Waiting, as we are now, for the end, or for her to fall and require care that we can't give is depressing, anxiety producing and is proving ruinous to our family.
So many people involved, b/c ONE selfish woman wants it HER way.
My dad starting showing signs of dementia in his late seventies. Our stories are very similar. You’ve gotten good advice here and it seems like you’re doing all the right things . Would just like to add a couple thoughts based on my experience with both parents and getting them into care at the same time.
Mom did not have classic dementia like dad but she could no longer reason, just wanted everything to stay the same. Dad was at the same level your dad is . Mom died after six months in assisted living and I then moved dad into their memory care section.
With dad I learned to not try to reason or argue with him. I just had to do what had to be done. I had to fib about some things and redirect him constantly. It was tough. He had a 30 second short term memory but could get around like a running back.
Dad thought he was just fine and I learned to not try to reason with him about his lack of memory and judgement. I would comment sometimes that maybe his memory was not that good any longer. He’d accept that.
Just go with the flow, fib some, redirect and when you have to do tough stuff like put him in care use any tools available to you. I told my dad that mom needs him to help her at the “therapy “ place. That got him in the door but it was a couple weeks of a real s#$@ show. Be ready.
The doc at the facility was able to get him on a good mix of meds. He wasn’t a zombie, still himself but would get crazy paranoid with out the meds.
Lots of folks think it’s terrible to use calming meds on the elderly but imagine being trapped in constant nightmares that won’t go away. Off the meds, the bad guys were always chasing my dad, stealing his car, kidnapping him etc. It was horrible for him without the meds.
If you haven’t already done so have a staff member from the facility evaluate your dad. He may be ready for memory now or pretty soon. It’s so much easier if it’s a progressive facility. Moving someone with dementia ain’t fun. Just down the hall, my dad never blinked an eye.
Get him settled in and then ease off the visits a bit. He needs to find his way such as it is. He may like socialization and enjoy some activities. My folks never did, just kind of grudgingly put up with their situation and made my life miserable.
Ah yes the guilt. I and everyone else here will tell there’s nothing to be guilty about and we’re all absolutely correct but it’s really impossible not to feel bad and second guess yourself. But remember your dad needs more care than you can possibly provide. We all get to where everything on the menu is horrible. You just have to chose the least horrible option.
You will get through this. Good luck to you.
the remote, it looks the same as the phone and she would put it down and try talking to the remote. I actually had to write instructions on a dry erase board and highlight the function button so she could play the DVDs. Just saying that you need to think in advance about his future care and what he needs later. The moving costs for the AL and the moving costs for downsizing to a smaller apartment added up. The transition from AL to MC was easily done by the staff, they moved her when she went to lunch and she barely noticed the difference when they took her to her new room. But again, moving and cleaning the last apartment and unfortunately having to clean the MC one later and besides having to clean and move and sell the house from before really leaves one worn out. Skip AL if you can, he's going to need more care eventually. I feel for your situation and having to deal with his condition is very trying. You can't take it personally but they do have a habit of trying ones patience and you're not the "bad guy!" Be strong