your thoughts on caregiving options for dad

storyofmylifeSeptember 25, 2013

Hi Everyone

First time poster on this forum, but a regular on the Homes forum.

My 84 year old mom has been taking care of my 89 year old dad. Unfortunately, mom, who has been in GREAT health was diagnosed with pancreatic cancer and we don't have much time left with her. Dad, who is frail, though hard of hearing and needs a walker to walk slowly, is in great health, and generally of sound mind.

Dad is suffering anxiety attacks over who will take care of him after mom passes. So much so, that it has become distracting to mom's visitors and adds to mom's suffering (who is unable to get any rest as she is dealing with her own pain caused by the cancer). We decided that if my mom were to spend her last days comfortably, we need to address dad's care now.

Dad has directed us to find a nursing home and he is willing to pay up to $3K a month (well.. that isn't going to work). We can rent out his house and get $3K to 3500 per month, along with another unit at 2,200 and can get close.

We have some options that we are considering and would like your thoughts. As you can imagine, we have not had a lot of time thinking about this and don't want to make a mistake.

Option 1 - dad can stay with either my sister or I. Our homes are about 30 minutes away (by car) from where my parents are living now. Dad does not want to do this (he said he would do this if our homes were in the same city). I'm convinced dad is OCD and will drive everyone crazy before too long.

Option 2 - dad can live at home and we can find a caregiver to come in and stay with him. I don't think he needs someone 24x7, but rather someone to come cook, clean, and perhaps take him on walks, drive him to a senior day program, and perhaps to visit relatives and friends. Dad, being a worrywart, probably wants someone 24x7, but I don't see the need for that. My biggest fear - dad never leaves the house and essentially becomes homebound.

Option 3 - dad goes to an assisted living home. In his current physical condition, this could work and also it gives him the peace of mind that there is someone there 24 x 7. Some homes have programs, drivers, etc. so this could work. We could supplement this by hiring a separate caregiver/driver to take him out to walk, to meet friends and relatives. As for socializing within the assisted living homes, I'm not sure my dad is the most sociable guy or the greatest conversationalist, so I don't know if he will benefit from the social interactions with other residents.

Option 4 - nursing home. This is dad's preference - or at least that is what he says. Fact is, he doesn't need a skilled nursing home. He is frail, but physically, other than being hard of hearing (and not wearing a hearing aid all the time), the home doesn't offer him much other than peace of mind (can I mention again that dad is a worrywart and OCD?).

I'm thinking Option 3 would be best, although I don't know much about AL homes (or even ones in private residences). I think Option 2 is ok although I worry that without a structured environment and someone like my mom "driving" him, he will regress and stay inside all day long.

Am I thinking about this correctly?

Thanks for your help during a very hard time in our lives.

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Yikes, I feel bad for you ((Hugs)). I would look into an assisted living place, that is connected to a skilled nursing facility~so he would not have to move twice if need be.

Do your parents want to be separated at this time?? Is your mom still at home or in hospice? What does mom want?

    Bookmark   September 25, 2013 at 8:09PM
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Nursing homes are $6000 or more per month. Assisted loving is $4000+ in many places.

Why not rate the options first and then try out the various local facilities?

First of all, your Mother needs all the attention she can get right now. Address that first, and have a heart-to-heart with your father about that priority. If he refuses to understand, then maybe he isn't so mentally sound.

Nothing is permanent, so try things out. For right now, your Mother's care is still at home, right? Surely he won't leave their home while your mother is still there, right? But she might need nursing home care, or other services away from home.

Most facilities will welcome someone in for short visits, so I'd be visiting all AL facilities and NHs in your area. Honestly, most nursing homes will not WANT your father as a resident. They are taking care of people who need skilled nursing and rehab services. AL would be far better.

So here's what I would do. Visit every facility and talk to people. Most places have social workers on staff, these people are your best resources! You'll probably find out that your have some misconceptions and will get a much better idea of care and costs.

Then when the time comes, try having your Father in your home and in your sister's home for visits of about 2 weeks. Don't move furniture or make any permanent plans. But try it before rejecting the idea.

Then try an in-home caregiver. Might cost $25 an hour, and you'll be doing some heavy-duty supervision. Typically, the patient winds up really disliking having someone around all the time. It can work out, but not always. Make sure that he has Lifeline or another medical alert system in place.

$5200 a month will not go as far as you'd think in many parts of the country. Maybe be fine in other places.

But you need to start beating the pavement and talking to people, and take your father along when you make site visits. Ask to visit at lunch time and have lunch with the residents.. Your local Area Agency on Aging will point you in the right direction to get a list of local care facilities.

Good luck and let us know how it's going!

    Bookmark   September 25, 2013 at 9:11PM
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Thank you for your thoughtful replies. We're going to schedule some tours of the assisted living homes soon, but will also talk to some in-home caregivers as well.

@yogalady1948 - my mom is in hospice (at home). At the current point in time with her health rapidly deteriorating, we will only have her for a few more days. We won't be able to get my dad into a program that quickly, but I think if he sees that we are looking out for him, and taking him on various tours, his anxiety may lessen. Over the past 3 weeks, his anxiety has been causing a lot of stress to my mom, who is in pain suffering from the cancer, to the point, where she told me not to come to the house (because as soon as I or my sister come over, dad immediately starts whining and crying to us that he doesn't know who will take care of him, and mom can hear it all, especially since my dad is hard of hearing and we have to shout quite loudly in his ear).

@sushipup - agree on rating the various options. Dad definitely isn't thinking straight these days. I think his being a worrywart all his life, is now manifesting in this very public anxiety attacks, and coupled with what I swear is OCD, is making him very non-functional mentally. We even thought about pulling him out of the house now and putting him in our house now, just to keep him out of mom's hair and let all the attention be focused on her.

Good idea about doing a planned transition - getting him used to living somewhere else and trying it out for short periods of time. I told my sister today that when mom passes, I don't want him by himself - I think he needs to be around people. So we may use that as part of the transition. During that time, we'll visit various homes and try not to rush and pick the wrong ones.

I will admit now as I start looking through the various options, it is overwhelming and I am glad that there are people on this forum that I can learn from.

Thank you all for your help in a very trying time for our family.

    Bookmark   September 25, 2013 at 10:20PM
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I am very sorry you are going through this.

He can't set his prices, the homes do that. I don't think he has a choice. He will have to pay what they ask, if he runs out of money he will have to sell his homes after your mom passes. As far as care home or assisted living, that is up to the homes. When my husband went to a care home someone came out and evaluated him. The assisted living won't accept him if he requires to much help.

When I was looking for a place for my husband I found the homes in small towns near the city I live in to be much more caring. Good luck to you.

    Bookmark   September 26, 2013 at 9:45AM
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I think option 3 will probably be best; my Dad at age 95 moved into an indepedent living facility - he stayed almost 3 years (Mom had just died). then he moved to my sister's house for 2 years; he moved in with me 2 months ago (he had just turned 100).

I would not put him in a nursing home at this point, if I were you. Assisted living or the 'right' group home would be much more likely to be a good fit.

Sorry about your Mom - it is tough to watch a loved one die from these 'rare' cancers (or any cancer for that matter).

Try taking Dad outside when you want to talk to him so as to not disturb your Mom, or INSIST he wear hearing aids.

    Bookmark   September 28, 2013 at 3:33PM
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Blessings to you and your parents.

    Bookmark   October 3, 2013 at 6:05PM
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One of the better choices is a CCRC where the facility is licensed for both asst. living AND nursing/critical care. That way you don't to move the elderly to two different facilities. The older they are, the more stressful it is to move them around.

We are currently in the process of getting my MIL admitted to an Asst. Living/Nursing care facility. In her case, and I would expect this is true of most of these places that have both types of units, it is the FACILITY who decides whether an applicant can go into Asst. Living or needs Nursing care, not the family.

The paperwork included financial disclosures of assets, her doctor's assessment of mental & physical condition/history, and a current TB test, in addition to the facility's own medical assessment after a 1-hr interview.

Most families vastly over-estimate the ability of frail seniors to live on their own. The average stay in AL is only two years, on average. Considering that during our many visits to the specific care facility we want to use for MIL, where we have met a number of AL residents who have been there 5+ years, that means there are a whole lot of elderly being admitted into AL units in this country who aren't even making that 1-yr anniversary before needing critical or nursing care transfers.

Generally at the AL level, there are charges for additional care needs. At the facility we are using, there are 3 levels of additional care, which the facility determines based on how much help a resident needs on a daily basis. So the basic rental cost for a studio with 1/2 bath - all showers and baths are scheduled and done with full escort service (but in AL assumes no need to help with hygiene, just in/out) is $3875/mo. This covers the unit the resident lives in, the daily housekeeping and all maintenance, basic TV service, 3 meals a day (in some places it's 2 meals per day), and all scheduled activities and outings.

Now come the extras. The following is NOT a complete or absolute list, it's only to indicate how one local facility determines care levels and thus the monthly costs per resident:
Level 1 care is minimal - help with medications only - adds $900/mo.
Level 2 care is probably where MIL lands: help with medication, occasional regular escort to/from classes, adds $1340/mo.
Level 3 care classifies complex medications (needed more than 2x daily), mandatory check-ins by staff at scheduled times, full-time escort whenever out of their unit, adds $1785/mo.

If you are in AL and paying for Level 3 care, you are paying exactly what it costs to be in the memory care or nursing care units. Some residents do this because they don't want to move into a new unit on another floor. The critical care units are always temporary stays, where the resident keeps their usual unit, as critical care is considered convalescence (not serious enough for hospital care, but too serious to be in a standard residential unit). It's used for residents who are recovering from illnesses or surgery or accidents, who need more care than just a pair of crutches and an occasional look-in.

YMMV on the facilities near you, but hope this helps clear up what it can mean to move into a full-care senior facility. These, btw, are non-profit organization prices. We found that there was little difference between the prices on AL in profit vs non-profit facilities - in fact, the for-profit places were generally lower. But the moment a resident needs critical, memory, or nursing care, for-profit facilities were much higher cost than the non-profit facilities. We looked at seven different facilities near us - there are more, but my MIL has dementia so we restricted our search to facilities with memory care units.

HTH others.

    Bookmark   October 4, 2013 at 7:58PM
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An addendum I forgot to add about the results of our research into care facilities for my MIL:

One of the facilities we investigated was a private care facility. These are often much less expensive and have fewer restrictions than larger facilities. These smaller facilities are generally owner-operated and are frequently referred to as “board and care” facilities. Some are licensed; some are not.

We weren't impressed with the facility we saw, which had 12 beds. Activities seemed to mostly consist of being plopped in front of a TV all day, with almost all the residents in wheelchairs. Some of the bedrooms were little more than closets. The location was pleasant -- it's a converted home with a cute small backyard garden and a private beach looking out towards San Francisco. The staff was nice and seemed caring, but arranging for outside transportation for trips such as doctor visits, was an issue -- only the owner drove, none of the staff did.

Not a bad place, but no real social stimulation or group activities as my MIL needs. She is still in good physical shape for her age, and was judged to have only mild cognitive impairment. At the 170-bed seniorcare facility we selected, she can go into the Asst. Living units rather than the Memory Care unit.

    Bookmark   October 10, 2013 at 2:23PM
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Just make sure all the legal papers are in order before either passes away. Especially medical and the house. It really makes a difference.

    Bookmark   October 13, 2013 at 4:46PM
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Thank you everyone for your great advice.

As an update, mom has passed away from pancreatic cancer about two weeks ago. She was surrounded by family at the time of passing.

Dad is struggling a bit to deal with her passing, but we are staying with him 24/7 until we get the caregiver situation set up. On the weekends, I "insist" that he stay over at our house as it gives him a change of pace and a break from the memories.

As for the caregiver situation, we have looked at several options. One option we looked at in depth was a residential care home - not quite a true assisted living situation, but they do have those capabilities. We liked what we saw and they had vacancies. The price point was above what Dad was willing to pay by about $900 (for a shared room) and about $1300 for a single room. This was something we could do financially if dad rents out the flat he is living in now. A second option we also looked at in depth, in parallel, was a live-in caregiver. Here dad was insisting on a certain cost, which I thought was unrealistic. I was surprised that we were able to find experienced caregivers who were willing to take on my dad for the target rate. Turns out that in the community that we were sourcing from, that there were many experienced and good people who were and have been offering caregiver services at these rates for years.

After some back and forth conversations with dad, he wants the live-in option initially as it is the least intrusive and most transparent option for him. It seems to make sense as his medical needs are very low right now, and the primary duties of the caregiver are cooking, cleaning, taking him on walks, and companionship (and making him wear his hearing aid - that's our requirement). We feel, and he does as well, as his medical and health needs require it, move him to an assisted living housing unit when it no longer makes sense to stay at home.

The caregiver starts Monday, and I admit, I'm a little nervous about it. We're going to keep an eye out on how he is handling having someone other than my mom living and caring for him at home.

Thanks again everyone for your advice!

    Bookmark   October 17, 2013 at 8:27PM
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So sorry to hear about your mother's passing. Sounds like you have a plan, and all of us here hope that everything works out well for you. Keep us apprised, and good luck!

    Bookmark   October 18, 2013 at 2:27AM
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CA Kate

Sounds like you have a decent plan. One caution tho': caregivers spend a lot of time with a person of diminishing mental ability who, after awhile and trust develops, can easily be manipulated into turning resources over to them. Just be watchful - not only of money, but of possessions too. My own mother's case would be a good example.

    Bookmark   October 19, 2013 at 6:11PM
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Sorry to hear your mom passed. Will be hard on your dad but live-in will help him so much as he probably didn't cook & clean much. So with those things handled his home will seem fairly normal. Do lock up important papers, nice jewelry(& your mom's treasures) My folks were taken so it is easy to con them or frighten them. Also lock up tools & extra car & have the keys somewhere else, dad had lot of tools in a motor home, they cleaned it out. Woman must have brought in men to take things as dad was so scared I told him it was OK, I fired her & he would never see her again & that day I got new locks for house & gates in back, .heavy duty type, Let caregivers know you may "pop' in at any time. Watch dad's behavior, seem happy, depressed, still joke or act way he always did or is he getting withdrawn(red flag)keep eye on his weight, losing fast or gaining fast might be fear or depression. Hope it works out well, I know there are some wonderful caregivers out there.

    Bookmark   October 22, 2013 at 2:02AM
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