84 an 85-year-old parents moved to independent living - mom wants to move back to house (money, assisted)

[KathrynAragon]

Freebird, I am so sorry for all of this. And your poor brother! What a blow for your family. I have a niece who lost a couple of toes last year in a mowing accident (wasn't wearing good shoes - ugh) and after the initial "OMG it could have been so much worse" she really struggled with some depression for awhile. I'm just telling you that so you can be prepared for your brother to hit a wall emotionally in a few weeks. Hope that doesn't happen but from what I can tell, it's common. But thank God he has family to give him some emotional support. He sounds like he's doing well.

On to your parents. I'm no expert but here's what I've experienced with the various elderly people in my family. My grandmother, who did not have dementia, recovered her senses (for lack of a better phrase) after being hospitalized, after about a week or so. She also wasn't on pain meds for years, unlike your mother (more on that in a minute).

My mother, however, never recovered mentally from the significant setback she experienced after surgery a few years ago. She did improve SLIGHTLY after stabilizing, but it was like she took three steps backward and one step forward. She recovered somewhat - with lots of therapy (which she was resistant to) - but never returned to her pre-hospital state. I feel like it accelerated her mental decline, which is common unfortunately.

OMG, Percocet for years??????? This can cause permanent kidney and bladder damage, by the way, even if she's not addicted.

Your parents definitely need, at the very least, someone from their community doing the safety check each day. They probably actually need more care than that, but that should buy some time.

I am so sorry that your family is going through all this. The next few years are probably going to be sad and stressful for your parents, and for your family in general. The only advice I can give you is to be sure you give your BEST, not your leftovers, to your husband and that relationship. It's sort of like putting the oxygen mask on yourself first, before you try to help others. Maintain your own health, your own marriage, your own emotional strength first and foremost. ANYTIME you catch yourself putting the needs of others before your own marriage and your own health, you're off track, so get back on track.

This is absolutely the most important thing I have learned over the past four years of elder care and elder drama. Once I learned that, things improved drastically in my life, even though my mom is worse than ever. It takes a lot of work to get things into proactive rather than reactive mode, if that makes sense, but it can be done for the most part. Of course, there are always going to be emergencies and unplanned things when it comes to elder care, but I'm talking about generally speaking, 80 or 90 percent of our energy and emotional involvement shouldn't be reactive - reacting in slight panic mode to one situation after another. This is what drains us emotionally and really impacts other relationships and our own health. Work HARD toward whatever it's going to take to keep you out of that mode as much as possible.

Hope that makes sense. Good luck, and thanks for the update.

[Freebird]

This is Freebird - I am home in California (for a week already) - I was in Florida almost seven weeks, between caring for my brother and sorting out things for my parents to make sure they were stable and safe in "the villa" going forward.

Here is what happened -

• After returning home from the three ER trips and the two in-house stays at Mayo, mom was content to cruise in her recliner in her nightgown all day long. During a return visit to Mayo after the second admission, her primary care doc certified her as homebound and ordered a social worker, occupational therapy, physical therapy and an RN to come in (covered by Medicare)
  
  Occupational therapy is Monday-Wednesday-Friday, physical therapy is Tuesday-Thursday and the RN rounds on her once or twice a week in response to input from OT and PT - she was actually there today (Saturday) because the physical therapist emailed her suspecting a recurrence of c diff. The nurse called me and we sorted out that her symptoms are from drinking milk and all of the other dairy products from which she will not stay away. . .
  
  big problem because she's not connecting that (1) if milk and dairy products give me diarrhea (2) and I don't want to have diarrhea (3) I shouldn't have milk and dairy products.
  
  It seems so simple - but dementia makes it so hard. And my dad isn't helping. I told him today that he needs to just not bring milk into the house if he can't keep from giving it to her (she's not going to get out of the recliner and get it herself). It can be world war III if he doesn't cave in to her wishes and demands - but he shouldn't !
  
  So because of OT and PT, mom is having to get up and get dressed, make her own breakfast, go walking outside, do exercises inside - she is getting stronger - using her rolling walker as she always has but obviously better able to get up out of recliner and move around. If she just WILL.
  
  My fear is that without the therapies, my dad won't push her to get up and around - she will get weaker, fall and break a wrist or hip - end up in some skilled nursing facility somewhere where my dad will have to live in the villa but drive out to see her - bad all the way around.
  
  
  
  
• We have Home Instead Senior Care coming in - paid out of pocket - a fantastic caregiver with whom we did a meet and greet on the day before I left to come home. She is an amazing fit, both of my parents like her and my dad finally realized that he can't handle mom alone - plus which mom can't stay alone while he goes to get groceries and to Walmart and CVS and everywhere else he goes.
  
  The caregiver comes in on Monday afternoons for four hours and Thursday afternoons for four hours. We understand we might need more help going forward but for now this is a good fit, working in around the therapists who come in every day.
  
  
  
• We also have the paperwork in place for the onsite caregivers to come in - wellness checks, safety checks, personalized aid - in addition to Home Instead. And my dad knows how to get help at all hours of the day and night - he has the numbers for the on-call RN and Home Instead in his phone, says he won't hesitate to pull the emergency cords for onsite services. It's hard to draw the line between being too protective of someone who is still in decently good shape - yet be sure that he KNOWS what to do if he needs to do it.
  
  
  
• The funds from the house sale (most of them) are in TD Ameritrade account now - and the three of us went to Wells Fargo and to the credit union and now I'm a co-owner on checking, money market and all of the savings accounts.
  
  
  
  
• I did a ton of housework, ironing, organization of bills and papers and stuff, straightened everything out for them as much as I could. It was almost a full time job caring for her before the therapists and RN started coming in - she was really sick for awhile with the c diff and still recovering from UTI. And my dad has been affected too by staying with her in the hospital overnight a couple of times - he wanted to, she wanted him to - I stayed overnight too but mostly it was him because neither of them wanted to be away from the other.
  
  So sweet - but not good for his situation going forward.
  

I told the social worker that I understand this situation is fluid and could change in an instant - the good thing about Home Instead is that I could call and have someone there within an hour to stay overnight even, until I could get there from California. It'd cost, but it might be necessary someday.

We are hoping that with all of this in place, mom will get stronger and they can stay in the villa for the immediate future. No question mom will need memory care in the future and my dad might too - but for now I feel like the situation is as stable as it can be with them there alone.

Because they're not totally alone anymore - not with the support coming in every day, sometimes twice - and communicating so well with each other and with me.

The social worker strongly feels that assisted living is the next move and I understand they are not going to be able to be in independent living forever, or maybe even not much longer.

But assisted living is so much more expensive and so much smaller of a dwelling - in the main building - one room plus a very small living space if that - the downsizing would be extreme and the change in lifestyle would be crushing for my dad. He is not ready to pack it in and just cruise all day long. He doesn't need the degree of assistance yet and is still able to provide for and help mom - Home Instead is a bonus to help him even more.

Moving would really destabilize mom too - she is finally no longer talking about the ex-house and this crummy little villa - she seems to feel safe there, to the point that she likes being inside and doesn't want to go out - which is both good and bad.

I really hope even though she has dementia and that he is getting some cognitive issues as well (for sure), with the support we have in place now, they can stay in the villa for the immediate future anyway - where there is a garage for the car and a washer/dryer (he still does all of their laundry - and likes to !).



My brother is not able to help out at all, understandably.


Tim and I are considering moving back to Florida (south Florida, but within a four-five hour car ride or just over an hour nonstop flight). It was Tim's idea not mine. We have to see if he will be able to work for his job remotely but it would be very good to live closer considering that I'm going to need to be there more and more often going forward.

Both of us know we need to have things in place going forward SO we won't be having to react on the fly like we have been. I am incredibly lucky that he understands and is protective of me and of us. We talked and had agreed that my staying longer to get all of this groundwork (both medical and financial) laid would serve us more nicely going forward and allow us to reclaim our life.

It seriously felt like this trip would never end - so many nights I was on FaceTime with Tim trying to hold it together - it is so great to be home with him tonight and feel like my parents are safe for now.


Thank you to all of you for your support and advice, thank you for the direct messages and particularly to runswithscissors for everything you've done for me behind the scenes.


PS to rws I tried to dm you, it said not accepting - I saved the message in case it opens up to accept in the future !

[bbtondo]

Freebird:

Thanks for the update! I'm sorry you have to go through this difficult situation. I hope that moving forward things work out the best that they are able to. Be well.

[sfcambridge]

Curious - what is the difference in price between where your parents are now, and assisted living? And often assisted living is more expensive than you think, as they nickle and dime you for every possible thing.... and you really don't get as much care as you need if you really need someone around 24 hours a day.

The care manager I worked with in the past recommended staying in independent living and hiring caregivers as much as you can, if you can afford it(!). With some oversight from family (if you move there) to help with medication management, bills etc... and an able bodied spouse to be around most of the time, often the quality of life is better for a couple staying in the larger space. And by having a caregiver or spouse around all of the time, it can actually be more attention than you get in Assisted Living.

But it often isn't affordable.

[germaine2626]

Thank you very much for the detailed update.

I suggest that your dad just "forget" to buy milk for a while so when your mom demands it he can say "Sorry Honey. We are all out of milk." I bet after a while she will not ask as often.

[evening sun]

Originally Posted by germaine2626

Thank you very much for the detailed update.

I suggest that your dad just "forget" to buy milk for a while so when your mom demands it he can say "Sorry Honey. We are all out of milk." I bet after a while she will not ask as often.

Or, he could buy non dairy milk "by accident"

[Freebird]

Thank you very much for the responses and the good wishes !

You guys are reading my mind about the milk - I told my dad so many times lately that he needs to just not have milk in the house - even though he likes it on his cereal with sliced bananas. It would totally take it out of the equation if the product wasn't even there. I'm not sure though if he's making the connection 100% of just how much trouble it causes for her - he needs to see it almost like rat poison right now for her.

I hadn't thought of the option of his just "forgetting" to buy it though - that would take the pressure off of him because mom is actually accusing us of punishing her and asking how long this torture has to go on ! She already thinks he's forgetful so that should work. And she doesn't understand that we are just trying to get her well and recovered from this. There is really nothing in the world that is worth eating or drinking to me if I knew that eating or drinking it would cause severe urgent lower GI issues like it causes for her !

She has tried almond milk and doesn't like it (her mind wasn't open, and it was the sweetened vanilla kind too, not just plain !) - so she would know he was trying to pull one over on her if he bought that or soy milk "by accident" lol. But forgetting to get it- that I could totally see. And I think he could pull that off too - if he would.



I agree 100% that staying in the larger independent living space, bringing in as much care as we / they need - even more often than we are already (as long as we can afford it) - - keeping them in the situation they know- - is the most optimal scenario.

The difference between the independent living residence where they live now compared to assisted living - is literally thousands of dollars a month for rent PLUS the cost of whatever care is added. And it's so true that they wouldn't have the level of care in assisted living that a one-on-one caregiver can provide, nor would they have the garage and the washer/dryer and dishwasher which is huge to my dad. Mom likes the villa because it has the screened terrace for the cat - and she likes to sit out there and listen to the fountain with the cat.

To be fair, I've not explored assisted living anywhere else besides their current residence because both of them want to stay where they are and are willing to have the caregivers come into the villa in order for them to stay there . . . which was a battle at first but then they understood that they needed help.

So we could bring in a huge amount (in time spent) of paid caregivers and still not approach the cost of assisted living or memory care at this facility or another one. They do fine at night once they finally find their way to bed - they are still staying up too late - but no need for 24-hour care. They both do fine showering and grooming - no assistance needed -no assistance needed with dressing either (mom needs motivation to do so, but the therapists are providing that because she wants to be up and dressed and have eaten by the time they arrive !)

It's mainly during the days that they will do well to have the augmented care / caregiver with them for support and company - and we can sure add more of that going forward if they need more help. Getting them used to the idea of someone coming in took awhile but now it is going smoothly and they have adjusted.

And there's a real possibility that mom especially might need to skip right over assisted living and go into memory care and that is way more expensive - so as much funds as we can save for that by staying in independent right now and bringing in extra care, the better.

It's so good to hear someone else say the same thing, confirms my feeling to go with this for now and see what develops.

[Freebird]

I forgot to include this in my really long post last night -

I've talked with the social worker, the therapists and RN, the caregiver and with people I know from this forum who have experience with elder care and this disease - both in pm and by phone.

Everyone agrees that this situation might be stable for now but that it could turn on a dime and I need to be ready to react to the changes.

But everyone also agreed that there's no way to tell HOW these two will do alone (alone but with all of the medical assistance and caregivers coming in) as long as I was more or less living with them in the front bedroom, staying there in the villa for almost seven weeks.

The only way to know how they would function going forward was for me to leave and come home - and I wanted and needed to be home anyway - so it is going to work out well going forward because now we can find out for sure.

IF they are not ok / safe / stable alone in the independent living space with all of the medical and paid caregiving coming in, the sooner we find this out, the better - and we can move quickly if we need to in order to keep them safe. I can get back there from California the same day if I needed to - it'd cost, but I could do it.

And if they do well with the medical and caregiving support then they can cruise in the villa for as long as they are safe and stable - always with the understanding that this isn't going to last forever.

[Freebird]

OK, all hell has broken loose. . . it's world war III in the villa. . .

I called my parents earlier to say hi before their caregiver arrived - Mom was screaming at me on the phone that I had taken her Percocet and wanted to know where it is.

My dad and I had hidden it in the villa back in March (March 10th) when we got home from that admission where she was altered from taking Percocet and Baclofen muscle relaxant together (as prescribed). T

After she was discharged, the physicians wanted her to only use Tylenol 500mg for pain going forward - to make sure everything was completely out of her system - and she has been doing beautifully with that since March 10th - to the point that when she was seen in the pain clinic on April 2nd (I was there), she was also scheduled for steroid injections but the PA said she wasn't hurting, her pain was controlled, he wanted to hold the injections in reserve for later if she DID need them (I agreed).

Now, this past week- week and a half, her pain is greater - Tylenol is not relieving the pain like it did this past six-seven weeks. This is the first time she's mentioned Percocet in weeks and weeks. She wants to know where it is and she's accusing me of keeping it from her, that I don't know how badly she hurts or I wouldn't "withhold it" from her.

I did my best to explain that I'm not withholding it (I'm in California anyway !) but that my dad and I agreed that because it was discontinued on a physician's order, that we needed a physician's advice / order to resume it. She was altered to the point of being almost comatose in the ER that night before they admitted her. It's not something we take lightly, resuming it.

I've called the pain clinic and also family medicine RNs and they are going to discuss with the physicians and advise before the end of the day.

In the meantime, the caregiver (the most awesome caregiver) has both of my parents in the car taking them to urgent care because my dad cut his arm on the fire extinguisher in the garage when he was leaving to go for a haircut (caregiver was going to cruise with mom while he was away).

Haircut canceled, all three of them are going to urgent care to get this arm patched up / stitched up if it needs it - so far they just washed it and wrapped it in gauze. Maybe it's just the skin laid back but it's several places, decently large areas.

And she's screaming at me on the phone while they are in the car, saying she's going to tell the doctors that "my daughter stole my Percocet". It is useless to try to explain - and I'm thinking they know me well enough to know that when I say it's in this location in the villa, that's exactly where it is - every single pill.

But she can't go throwing that accusation around ! - it could cause big trouble for me if people don't know she's got Alzheimer's / dementia. She's still undiagnosed - that should have happened a long time ago but I've been trying to put out all the other fires and keep my head above water.

Enough metaphors -

How would you handle this, short of waiting for the phone call and restarting her with the physician's permission? If he gives it?

I told her that dad could give it to her as soon as we get the word from the doctors - she said he should give it to her no matter what, but he's afraid of crossing me up (from here). She is agitated and angry - and Percocet from what I understand can make that worse ! And I don't want her hurting uncontrollably when Percocet worked well before.

And she's totally correct when she said today that she wrote down every dose and what time - with all of her medications. She has done that for as long as she has been taking them - the exact time of day or night, never exceeding the dose that was prescribed - indeed, for pain medication she was stretching it out between intervals as long as possible. She has never abused it - but there was no reason to resume it up until now either, because Tylenol was working so well to control her pain.

This afternoon I am incredibly grateful that I stayed around a few days longer and was able to actually talk to the new caregiver on the phone and then meet and spend a couple of hours with her and them during a visit. If she wasn't with them, things would be very different right now.


Edited to add - I've just called family medicine to give heads up to her doctor that he needs to take steps to formally diagnose her dementia and get her on some meds - my dad is not going to be able to handle her going forward if she stays like this, unmedicated and untreated.

[Faworki1947]

umm tell your mother that if she keeps acting like a addict that the state will put her in a controled unit and she will not be allowed to act like this .. She is being TOTALLY unreasonable.. she doesnt need the percocet she WANTS it.... is whats wrong right now .. I honestly doubt she hurts as bad as she says ... the Tynol doesnt stop working in one fell swoop.. .. her mental issues are all jumbled and thats causing the screaming fits .. I hope her Dr see's she is not right and shouldnt have them.. I would expect more fits and more problems as her dementa gets worse .. and its sad ..