Loading discussion content. Please wait...
AL or continue in IL
I've come to the conclusion that dad must be in some abnormal type of Stage 6. At this point he's refusing to walk much saying he is afraid he will fall. He's started refusing to shower because he says he is afraid he will fall. I have him in IL with 24x7 caregivers which is mega expensive. I could switch him to AL at another facility which would cost 1/6 as much at the highest level of care with caregivers checking on him every 2 hours, but here's the thing:
1. He wants to sleep between 6am and 11am and then get up and have breakfast - which AL doesn't do. He seems to mostly lie in bed awake all night, then fall asleep after 6am.
2. He wants to mostly eat in front of his TV and have his caregivers serve him.
3. He wants a caregiver sitting in his apartment all night and all day to wait on him anytime he wants. He is apparently afraid to be alone.
4. If he doesn't get what he wants he gets angry. For example, I asked the caregivers NOT to bring him room service dinner anymore and that he should go (in a wheelchair) to cocktails and dinner with his lady friend. The caregivers would roll him to cocktails and then roll him to dinner and back and he threw a big tantrum over that, scared the caregiver so badly, she caved and got him room service.
He was a commanding officer in the Navy and he still has it in him to verbally make it impossible for the caregivers not to obey a "direct order."
5. In the morning, he is usually disoriented, which I think might be low blood sugar. The caregivers are not allowed to check blood sugar, so he could benefit for a higher level of nursing care in AL, but again, I don't think he would comply with the schedule in an AL. I was talking to my BF about it last night and she says she doesn't think he will comply either.
6. He is avoiding walking as much as possible. He has already started to develop a bed sore from so much sitting and the caregivers try to get him to move a little to try to help the area to heal, but he's not compliant. He is avoiding walking even when the PT comes to try to get him to walk. Again, he is stating that he is afraid he will fall. But, in reality, he has not fallen in months and when he did fall, he was not injured at all.
With all that is going on with him, I think he may be late Stage 6 - he did have aspiration pneumonia in July. It's weird that there has only been one delusion - where he woke up in the morning and thought he called my husband on the phone and some other man answered and said my husband was going to divorce me. When my husband and I both told him this was not true, he believed us and has not mentioned it since. There have been no hallucinations or he has not mentioned them. However, at times he forgets mom is dead and is trying to figure out how to get in touch with her and other times he knows. He has called me asking where mom is and I gently told him she was deceased and he said he remembered that once I told him. Then he was calling me later and the next day saying he must have been confused as he knows she is deceased and it was apparent he is troubled and embarrassed that he forgot. I gently reminded him of what happened to mom.
He has not asked for a newspaper and he has apparently forgotten his Rolex watch (which I have in a safety deposit box since his hospitalization for aspiration pneumonia.) I'm kind of relieved about the watch as I don't want it to get stolen, so I have not mentioned it to him.
What do you all think? Should I move him to AL? Just not sure if that will work for him.
Bedsores, anger, disrupted sleep, altered sleep circadian rhythyms, refusing to shower, low blood sugar requiring medical monitering - this all screams MEMORY CARE. And only a MC that has an extra layer of medical services.
Stages seem to figure a lot in your posts, I never worried about them a lot because my family member always was scattered between several. However, no one beyond the earliest of stages belongs in Assisted Living (1-4) Just about everyone who comes to the boards has found that the ship has long ago sailed for Assisted Living and it it time for Memory Care-or, they find the stay in AL is days to weeks before it is recommended they move to MC. Stage 5 is notoriously difficult and I would never subject someone in this stage or beyond to the "light" support in AL.
I think everyone persists so much in thinking about AL because it is hard for us to think we are not providing a more regular setting, more autonomy for our LO - but if we call this one wrong we end up complaining about the facility, or the care suffers or worse, out LO is hurt because not enough care. AL cannot deal with your Dad's care needs, and care needs drive the decision making.
If you can't bring yourself to move to Memory Care (brace yourself, skilled nursing is around the corner it sounds like), just leave him in IL with the expensive 1:1 care. You have been clear that there are way enough sufficient finances to do this. Don't do in between AL it will be a disaster.
BTW, at places with both AL and MC, by the time a person is refusing washing and having disrupted sleep and anger outbursts, those are clear indicators for MC - I found this at researching over 24 facilities.
Of course, a rose by any other name. Ghostdog has written how in NJ even MC are officially called "AL". The facility we used, their Memory Care was called "Assisted Living for High Acuity Needs" - translation - Memory Care.
Leave things as they are, or go to the best MC you can find, where you have the ability to hire extra care if needed. No MC or SNF will provide 1:1 company. Our MC had 1:8 staff to patient ratio, and they had to be safe in their rooms for several hours themselves and overnight (room checks available).
Macy Rose, I hope we've "known" each other long enough for me to make the following observation:
You have essentially set up what sounds like almost a Memory Care bordering on skilled nursing (1:1) in the current setting, sans the MD or RN. If you change to a facility, it must a least ball park the current level of your Dad's care needs, which will be Memory Care or skilled. We all get so close to our own situations that we cannot see the forest for the trees with our emotions, our own loss and our own desires for our Loved one tangling together. The only way you are going to even approximate the current level for care begins at MC.
If this phase of life, what has been referred to by some as"The Niagra Falls of spending"is still meeting Dad's care needs, continue. MC and nursing homes are not cheap either. If he has the money, by all means leave things as they are, if his care needs are being met. But it sounds like his medical care needs are way, way, way stepping up, and status quo may not be possible (but investigate mabye a LPN for the morning with the wound care nurse coming in - don't wait on that, those wounds can go south in days)
I understand about the Niagra Falls but while there is water I would not consider a move. He will simply not get the kind of care he can afford in either AL or MC. Additionally any disruption could bring on horrible confusion, anxiety or anger and I know you do not want that for your father.
Why not let him sleep and eat when, where and what he wants. It really cannot make a difference if he is failing.
He does not need to comply with anything...just let him be happy living out his life
Re the showering...get him a wheelchair that goes into the shower and a hand held sprayer.
I know what AL (and MC) will/will not do varies by state, locality, brand and individual facility. At my mother's all dementia facility, residents are allowed to keep their own bedtime habits. Also for persons who truly prefer TV in their room all day as opposed to activities, that is also OK (although staying in bed all day when not necessary due to physical condition is not encouraged). In NJ, all AL facilities are required to have food available most of the time, many anytime menus include a breakfast option (of course once the full kitchen closes, options are more limited).
But the "able to be on their own" for a period is a real thing in AL and cannot replace the kind of monitoring provided by 24 hr care aides. And at least in my experience the third shift is definitely not as vigilant until the early morning risers start stirring. In my mother's facility, there are MC residents who have 24 hr private duty aides because of their fall risk, because they keep abnormal hours, because they want 1 on 1 attention (and of course, because they can afford it).
I seem to recall that your father preferred the TV room and being waited on when he lived at home and had you had caregivers coming in?
I find it helpful not to be wedded to "stages" and instead look at needs and longtime habits. My mom rarely asks for anything so it is important that opportunities be presented to her -- she is personally handed a magazine or newspaper every morning and she reads it. You have quite a private set up in a residential location that I think you've said your father has likes, where he has a "ladyfriend", and where presumably the food is great. Can you add a visiting nurse who can monitor morning blood sugar -- it may have to be private pay, but IL is your father's home, so he should be able to tap any appropriate home-based service. Are your private duty aides dementia trained? Can you do anything to make the shower safer or just seem safer for your dad -- shower chair, additional seating in bathroom, different grab bars.
Facility nursing staff at the AL/MC level can be great, but things get disrupted so having things requiring nursing attention at a very specific time may not happen, diabetic diets often don't get fully implemented all the time. Good nursing may not always line up with good dietary services at the what is put in front of someone level.
And finally it is true mostly that you get what you pay for -- what is your father paying for now that benefits him or that he enjoys versus what would you be paying for in AL or MC? Once you start relying on the facility staff you are ceding control to a large extent (which may or may not be a good thing) but that is something to consider if your father's assets make it possible.
Also, I have seen high ranking military retirees in my mother's facility respond with alacrity to "orders" from someone with seeming authority given in a military fashion or conveyed by the aide as coming from someone higher ranking even if the individual's correct rank is not specified on the shower issue.
IL may or may not be right for your father, but I don't think AL alone is going to replace what you have now.
What I have done so far is have the IL take down the glass shower surround for dad's shower and put in a shower curtain, bought him an adjustable shower chair with arms. The shower has lots of safety bars and there is a handheld shower wand. Then I had them raise the toilet seat with one of those surround things as he is tall. I am also having them replace the inward opening bathroom door with an accordion door so that he cannot fall against the door where his caregiver cannot get to him.
I have the caregivers let dad do pretty much whatever he wants in regards to sleep. Dad didn't retire until he was 82. He would get up at 6am and make his own breakfast, go into work, have lunch out at a restaurant and then come home and have dinner on a tray in front of the TV. Of course, back when he was on a ship, his routine was much more rigorous and controlled by the times on the ship. But in general, from age 50+ he would go to bed by 8pm in order to get up early the next morning for work.
Here's my concern, his expenses are outstripping his income by around $5,000 per month even with his longterm care insurance. He can afford a lot in terms of luxury, but it is now too expensive. If I knew how much longer he would live, it would help a great deal in figuring out what to do. I am wondering about cutting out caregivers - but when? Overnight, he wants someone there, even if he is asleep. In the morning he needs someone there whenever he awakens which could be anywhere from 8:30 to 11:30am. During the afternoon, he needs someone there to help him go to cocktails and dinner at 3:30pm. After dinner he wants someone there to wait on him help him change for bed.
How in the world can it cost that much with retirement and LTC insurance? Yikes. MY policy pays 350 a day and I could have bought a lot more.
I would look for private caregivers asap. Mine were wonderful, less money for me andtheyhad more take home pay.
BTW...Can your father use a walker? He may not like being in a wheelchair.
You know how good you are at figuring stuff out. You can be in charge of me anytime.
I still vote no move at this time.
I don't know how the LTC policy is structure but my mother's pays more per day for Skilled Nursing which includes secure MC with onsite 24/7 nurses even if the state rates the MC as AL. The was a pleasant surprise and a really significant difference for us (double the amount paid for AL/home aides).
Another thing to consider on costs if you move him to AL will the savings be enough that if necessary you can add back in private duty aides to meet certain needs if necessary or pay a la carte through the facility.
Here MC is between $7K and $10K (full care, essentially skilled nursing with no IVs etc, but retaining the residential setting). SNF is $10K and up.
Dad uses a rolator. He will walk from his chair or bed to the bathroom or from the bed to the chair, but doesn't want to walk otherwise.
Have you looked into a state veterans home? They have some really nice facilities and VA pays a daily per diem which averages around 3K a month...savings would help cover companion costs if you need to have one for your Dad. He may become social in a more open environment than IL. My DH is in a SNF/MCU at one...24/7 nurses on duty who can monitor/manage his blood sugar, CNA's around the clock...there are some residents who do not like to get up early and they let them sleep and get them their meal when they get up. There are some residents who are very viable...just need assistance with ADLs and oversight. There is in-house PT and OT, dietician, meals prepared according to diet, likes or dislikes.
The über luxurious AL and Memory care 1.5 miles from my house would cost just under $3,000 per month for the highest level of care - where they check on him every 2 hours 24x7 with his longterm care insurance paying $110 per day and then if I added in daytime caregivers, it would be $18 per hour for those, but yes, it would be less expensive than 24x7 caregivers. The negative is that they insist residents eat in the dining room.
Dad's current expenses:
Apartment $3,300 per month
Minus LTC: $1,650
Total: $14,610 out of pocket (plus cable and telephone and groceries and Depends, etc. - which are nominal by comparison).
Re life expectancy - I know it's a difficult topic but here's what I looked at -
my mom was 86 when she went into a care facility (2015) - her sister lived to 97, her great aunt to one month sort of 100 with active cancer, I figured that that even though my mother was not physically frail but had a history of major cancers, I had to figure at the outset at least 10 years with possibly 9 at a high level of care and that if I could cover 15 years, then there was ample cushion. Then I re-evaluate as her health status changes.
She has no lifetime limits on her LTC policy which covers about 88% of her facility care but I also looked at what would happen if that should somehow fail.
If I had to hire full time private duty aides on top of her current facility's charges, I would probably be looking into skilled nursing. In MC AL when she was still adjusting to moving from her home, I have had private duty aides for 2-4 hours in the daytime several days a week to help her pursue certain activities, but have not needed them for personal care or for direction to meals.
I am shocked at the low amount on LTC.
A couple more thoughts.
1. How much less would AL be? MC?
2. You will likely need 12 hr care... $6048
3. What laws would be a problem like needing to check for soiled depends every two hours.
4. What would constitute need for removal and how much notice. It sound like your father is a good guy but shall we say definite?
5. Are you able to keep your medical team?
6. Is he getting all of the Navy benefit retirement money due to him? I would think a commander would get a sizeable amount. At least he should!
From all you have said I don't see MC at this point and think AL very iffy. Maybe ar a later date?
Very big decision!!!!
Your father's behavior is very similar to my mother's. Particularly in that they are both spoiled by 24/7 care and if they don't get what they want IMMEDIATELY they start screaming. Anything less than the "one on one" care that your father receives now is going to be a difficult transition for him, as it would be similarly be for my mom. But finances rule and you certainly can't go by average life expectancies when doing financial planning. My mom has several health issues besides Alzheimer's and she routinely outlives her average life expectancy.
Definitely MC over AL, I don't think that, as far along as your father is, that he is a good fit for AL. Also, since he is afraid to be alone at night, again like my mom, you're going to need an aide to stay with him for 8 to 12 hours a night at a minimum. One alternative is trying sedating drugs before bed but, or course, that leads to it's own set of problems.
Your father would probably be best served in SNF, as it would provide the best care for him from a medical point of view and may negate the need to hire additional help at night if he has a roommate that he likes. But with SNFs being so institutional and your father having the financial means for a nicer living environment, I can understand reluctance to place him in a SNF. I would feel the same way.
Just my humble thoughts: If all his needs are met now, then he is o.k. where he is even if at times he seems upset. At a AL, he may find more things that upset him. Peace always Veronica
You have always offered very good advice to me and many others here. And you have received some this weekend.
I however, can not offer anything for your situation other than support and confidence that I think you will make the right decision for your dad.
Good luck and best wishes, Greg
So, I looked at an extremely upscale AL for dad. It is 1.5 miles from my house. Here are the costs:
$4195 for the apartment
$1900 for the highest level of care
minus $3300 LTC insurance (pays $110/day for facility care)
equals: $2795 out of pocket.
Difference from current arrangement:
$14,610-$2,795=$11, 815 savings per month.
The move will undoubtedly create problems for your father. Loss of surroundings, friends, routine and as well as a possible major overall decline. Bottom line this means a lot of extra anguish for you. However money does run out and we do our best. The money spent for care here will affect the way I live from here on out but it was spent on someone I love and there are no regrets, only thanks that there was some to spend.
Please do not be swayed by how close unless you intend to be there multiple times per day and please do not be swayed by upscale and look seriously at staff training. Specifically for PWD. AL will have little to none and you will need 24/7 care to continue. They will tell you they are trained but ask them what program, is it for all staff and is it ongoing. It will be the treatment of staff that will make it work not what it looks like or how the other people look.
Listen carefully to what they say and read about the grounds on which they can give him the boot because you father just might not be the most compliable resident based on what you have posted.
I am surprised that you can only get that small amount for LTC. How much per day would it be for MC? While I would do everything not to move him at this point in his cognition you might find a MC that is actually a good fit.
Did you double check the Navy Retirement? Isn't it for life?
My husband and I visited dad yesterday and he was very oriented and talking about current events and then about missing mom. He is worried about the shower and worried about falling in the shower, yet he won't allow his caregivers to assist him, although they have done that before while he was in rehab. His lady friend showed up - her smoke detector was going off and scaring the fool out of her - it is really loud, so dad's caregiver and I went to her apartment and I could see that it was flashing. Of course, the IL facility had no maintenance onsite yesterday, but they had a step ladder, so my husband replaced the battery. Unfortunately, although that made the light green, the smoke detector went off again. By then dad's girlfriend's daughter was there and the lady at the front desk said the smoke detector would be replaced on Tuesday. I told the daughter that when that happened with dad it took 2 weeks of nagging to get them to actually replace it, so she's going to ride herd on them.
In the meantime, I feel like we are paying way to much for care and when dad's apartment goes up in price, it's going to be ridiculous. I don't think that dad would approve of the expense as it is as he was always frugal but of course, he can't think clearly enough to understand that he is way overspending on caregivers just to have someone at his beck and call.
I seriously considered moving him to my house and hiring a live-in caregiver, but the bathroom for my downstairs guest room has a narrow door and there's really no way to make that door wider without demolishing and rebuilding the entire bathroom. Then the next problem is that the bathroom itself is very narrow where he could not turn his walker around in there, so I would have to take down the closet and shower and make the shower and closet smaller. My husband is concerned that if dad lived with us he would be constantly calling me plus his loud TV - my husband's home office is across from this bedroom and he is often on the phone on business or working on something he needs to concentrate on. Of course, if he lived at my house, that only gives him me and my husband to socialize with, which, IMO, is not all that great compared to his current situation where he sees many different people daily and has many friends.
The caregiver told me that dad's incontinence problem has resolved. He still wets himself due to his prostate issue, but his bowels are back under control. That problem only happened due to the hospitalization. He's still resisting walking with the Physical Therapist but his caregivers are managing to get him to go to cocktails and the restaurant for dinner on most nights, though not all.
Macy Rose, what's the exact scoop with your current issue?
Is your Dad running out of assets in the next 3-5 years, or are you just being thrifty and horrified at the spend rate? I (understandable-I panicked mid journey and seriously considered a move for finances). Many of your other posts have stated your parent(s) do not have to worry about money. The fact that you Dad wouldn't approve of the expense is moot and shouldn't be figuring into your thoughts, you get him the care he needs, whether it be at his place or a good facility.
My LO had lots of demanding and outrageous behaviors that subsided in the structure of his daily in the MC and nursing home. This is a possibility for your Dad.
A bathroom remodel would probably be least expensive route but with both of you working outside of the home you would still need caregivers.
Have you considered and elevator? I am thinking about one here
edited...can the Dr order care?
MacyRose, I know where you're coming from in regards to money. My mom also has enough to get by for years, but where she is at right now is very, very expensive. When I switched her from her other AL, due to her stroke, I had to make a quick decision. I wasn't even thinking about her need for MC at the time. Mostly wanting her nearby and a community that could handle her increased care.
I believe we went from $4,700/month (which included med. mgmt) to $7,700/month (which included med mgmt. and 7 ADL's since mom was now physically unable to walk. etc.). Where she is at just changed her ADL's to 10 because they say they need two people to transfer her. They have raised her costs to $8,800/month. I'm a small lady and so is my mom. I have no problem transferring her out of bed to her chair, in and out of the car, onto the toilet and back to her chair. They say they need two people and the caregivers are all much larger and stronger then me.
The MC I've been looking at is around $5,700/month and includes everything. I was brought up to be conservative and frugal, just like my parents, so it's taking everything for me to not make the move yet. I don't want it to be about the money. I almost wish it had to be, but mom appears comfortable, clean, well fed, etc. I'm just not sure yet.
Actually I work from home 75% and onsite 25% and my husband works from home about 50% of the time. That's one reason why my husband is not wild about dad moving in with us as dad is likely to create a disturbance.
MacyRose -- my partner and I work mostly from our house. Having my mother in the same place would be a recipe for disaster. Your dad seems to show a preference for being waited on and commanding the situation (my dad did too) -- even with extra help that is likely to permeate the whole environment.
Also, especially if your husband's office is in the same area, that bathroom renovation involving taking down a wall could be pretty disruptive -- great if you want an accessible first floor bath, but not so great if you've got deadline pressures either on the work side or on the parent move-in side.
Regarding moving your dad to your house versus another facility, in my lay opinion, either move has equal potential to disrupt his equilibrium. Move him to your house, you and your husband become the primary folk who have to bear and manage the consequences 24/7; move him to another facility and there is (one hopes) plenty of other help and peers to distract.
P.S. my mom's LTC payouts would have been similar to your dad's if she had not bought an inflation rider -- the power of compounding.
I vote for your Dad living with you.
Our main bathroom is narrow, so I installed grabs bars that my mom uses in place of her walker. Mom will also hold onto the sink and a reinforced towel bar as she makes her way to the toilet. Also, when mom came home from rehab, our light weight, travel wheelchair is narrow enough to fit in our bathroom until she was back to walking again. Another alternative, as someone else suggested, is to install a stair elevator to access the larger bathroom, this would be at a cost that is approximately what it costs for couple of months at AL.
If your aides are good, they should handle everything, and your father should not be bothering you at all. When my aide is here, my high maintenance mom requires zero attention from me. I think a single aide will be enough socialization for your father. My mom just wants a body in the room, she's not picky about who it is, so long as they are nice to her. Less people around is probably better for mid-stage Alzheimer's patients anyway, much less confusion.
Regarding the high volume from your father's TV, why not have a contractor insulate the walls to make them sound proof. The cost is comparable to a few months at AL.
Macy, the way I read your posts is that you can't continue with the status quo. Moving your dad to your home is the best way to stretch his money. It will give you peace of mind, plus you will have total control over his care.