Respite Care for husband while on vacation in August

fireflies

Not the best one to write on public forums but need some much-needed advice. I noticed my husband with memory issues for the last 8 years.  It took a few years for his family internal medicine doctor to concur.  I also started to have my husband see a Senior Health physician who specializes in geriatrics.  They seem very good.  They always assess him apart from me and also get my input as what changes and challenges I have.  We are suppose to see them every six months, but they do not set up the next appointment when you check out and you generally have to wait 2 months to get an appointment when you call.  We saw them last July after a failed 3-week vacation to Florida in February 2021.  At that time his MOCA score was 20/30. Even with that score they said because of his behavior he was in Moderate Alzheimer Dementia.  During that trip in the winter of 2021 he lost his gun, wallet, car keys etc. and believed they were stolen. We came home early and after the fact found that they were just misplaced.  He is retired from law enforcement and after that trip got rid of the guns. He did not take it well but now has not mentioned the guns for months.  

His past MOCA scores have been: 22/30  11/28/2017

                                                        20/30  9/27/2019 

                                                        19/30 11/06/2020

                                                        20/30  7/02/2021                                                                                                                          17/30  3/18/2022

 I love to travel more so than my husband. In the past before Alzheimer we would travel together but often I would also do some amazing trips with my sisters, cousin and even went to New Zealand and Australia with my son before he got married. So I decided I can handle this disease process if I can maybe once a year take a vacation. The idea of never traveling again was really depressing me.  Without looking I came upon an Africa Safari that will be close to 2 weeks this August.  I found this trip last summer. So I booked this trip with my 2 sisters and my niece. I decided I would worry about the details of my husband after our trial on Florida again this past February.  Unbelievable our Florida trip this year went without a hitch.  We were also able to take an Alaska cruise last September with success too.  Of course he doesn't remember going to Alaska in September but we both enjoyed ourselves.

So now it's time to decide how to care for my husband while I'm gone.  I looked at a few Memory Care facilities, and finding which ones will take Respite stays.  One place which is strictly Memory Care wanted me to bring my husband with me.  I'm thinking no way will he go and visit this place but then begin to think if he won't visit how will I get him to stay there for 2 weeks.  So the morning of my appointment, I don't tell him we have an appointment but just mention why don't we look at this "assisted living" apartment in case something would ever happen to me or to him and maybe one of us would need this. He was no way interested, said I'm trying to get rid of him and place him in a nursing home.  I said no that wasn't the case it was just to check out this place for in the future to see what is out there for either of us. He said no way and to change the subject. So since he didn't know about the appointment and I already had plans for my weekly Mahjongg game I just left early for that and saw the place with my sister.  I thought it might be acceptable, I've seen other Memory Care units but this is the first one that also offered Respite care too.  I've since found two others that sounded really nice that I will check out in the next few weeks.  My dilemma is we really don't have extended family. His family is small and not close to us.  My family is small and most will be on the trip with me.  Our son has recently said he can step up to help. Said he hates to see his dad in Respite care for 2 weeks. But he is married with both him and his wife working full time and has a will be 20 month old toddler.  Then I have a cousin who lives out of state but knows us well and offered to come stay at the house for a week. She is a retired RN and retired from an airline so also has free flights.  I, not thinking or knowing better said I didn't think I would need her (what was I thinking!!).  So now thinking of asking her if maybe she would come for a week.  I would pay her.  If my cousin could help it would also take care of our dog and cat.  If he goes to Respite care I will also have to place my dog in a kennel for two weeks and have my son stop over every few days to feed the cat. My main concern with Respite care is what if I try to drop him off the day before my trip and he refuses to go in.

I've been reading others using Respite care but I was always thinking my husband is not at that stage.  He will not go quietly.  Now my much anticipated trip is getting more stress then I bargained for.  Ideas?

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Ed1937

Hi Fireflies. Here is a video that might give you some ideas. I hope it helps. When Someone with Dementia Refuses to do Something 

JDancer

I could have written your post. I, too, have traveled to amazing places with my sister and cousins. I miss it desperately. 

Something I've planned, but not done- We have a friend who has done elder care. I've thought of paying her to stay in our extra room while I take a trip and tell my DH she is having work done on her home and needs a place to stay. My DH can't stay alone but would not like to have a stranger around or admit he needs help.

Gig Harbor

I honestly think respite care is your best choice because you don’t know what shape your husband will be in by August. By then he might have progressed enough that your cousin won’t be comfortable caring for him. I would book the respite care. About two weeks before your trip complain about having abdominal pain and pretend to see a doctor. The doctor will recommend a stay in the hospital for tests and exploratory surgery. You can explain to your husband that he will go to respite care because there is no one else to care for him and stress that it is only for two weeks. Your son could be the one to actually take him after dropping you off at the hospital. It is an elaborate plan and seems crazy to have to lie like that but desperate times call for desperate measures. If you choose to have your cousin you need a backup plan in case something happens to her and she can’t come.

harshedbuzz

fireflies-

It's really hard to say. So much depends on the stage in which your DH will be in August when you go. Things could change a lot between now and then. Or not.

The MoCA scores provide some clue, but they don't tell the whole story. Just as important would be his ability to complete his ADLs independently and his personality. We had a cousin who stayed with dad in the middle stages while mom had knee surgery but weren't able to impose upon her once dad needed help with toileting and bathing. FWIW, my dad had higher MoCAs not even 9 months before he died at a point when he was mostly incontinent, actively refusing showers and not cooperating around food, hydration and medication. 

We were initially planning respite to attend a family funeral, but when dad's behavior took a turn towards aggression mom, I was able to convince mom to make it a regular placement as all of the moving parts associated with a permanent placement were part of getting respite- the financials, the DON interview, getting his PCP to sign off, having the POA vetted, labeling clothing and- most importantly- his adjustment period. Many MCFs will do the DON evaluation at your home if you ask- especially those places that are not Medicaid-friendly. 

In your shoes, I might try a shorter and closer trip than Africa as a dress rehearsal first. If you are using the friend's services, maybe you could create a fiblet about her having work done on her home and needing a place to crash for a bit. If you decide on a facility, you'll need to create a fiblet that doesn't imply he needs a babysitter. When we took dad to the facility, we created a narrative about seeing a new doctor who ordered a period of rehab at this fancy private rehab center. The staff is used to such ruses and will play along if you give them a heads up. He wasn't happy, but it got him past the door.

Jeff86

This is a little eerie, but here goes.

We are now in year six of the AD journey, and no one can say how long it will go on.  Other than AD, DW is in good health.  (I know, it’s like the old line, “other than that, Mrs. Lincoln, how did you like the play?”).  It’s not impossible to imagine six years or more on this road.

So I made a decision that, while DW can no longer travel, I didn’t want to give up traveling for an indefinite period of time stretching endlessly into the future.  An opportunity arose for me to go on safari in Africa, this summer.  And I have committed to doing so.

And so now I, too, am thinking about the care arrangements I need to make for DW in order for me to take this trip.  I took a shorter trip earlier this month, to Florida for a week, and had aides stay with DW 24/7.  It worked out fine  But this upcoming trip, which will stretch to 2 1/2 weeks, I am thinking about how much of a burden I am placing on the aides, who have families of their own, and wondering if respite care is a better idea.  Respite care also has the advantage of it being a dry run, as it were, for potential placement down the road.  It’s possible that DW may actually thrive, with more activities and more people with whom to interact.

I have one advantage, if you will, over you as I contemplate respite care, and that is that my DW is further progressed than your DH.  DW is late stage 6, and generally very compliant and easy to manage/care for. She needs help, and not only accepts it but wants it.  (So unlike her pre-AD self)  I think I could bring her to a MCF without much question or even awareness from her.  Which, in a peculiar way, makes me feel a little guilty.   But if I tell her about it, she might fret, in the moment.  Lack of short term memory will mean it won’t last.  So if I go with the respite care option, I’ll tell her at the eleventh hour.  

At any rate, I appreciate the challenge you face to obtain coverage/care for your DH.  Your cousin sounds like a viable solution if your DH is stable and accepts her presence.  Good luck with this and let us know how you make out.  

Gig Harbor

The problem with 24/7 at home care is if an aide gets sick and can’t make it and if the agency has no one else to send who steps in to care for your LO. The problem with this disease Is that we have to think of all possibilities. If he is in memory care and needs to go to the hospital the facility can take care of it. That would be a much more difficult thing if he were home with an aide who had no legal permission to check him in. I know these are remote possibilities but they might happen and it might be difficult to get ahold of you.

fireflies

Thank you Ed 1937.  I've seen CareBlazer Utube videos in the past and she is very good.  I've also with research for Respite Care found a Memory Care facility near me called Arden Courts.  It's one of many in the United States run by a company called Promedica.org.  On their website under Health and Wellness resources they have past Zoom meetings you can watch under  Virtual Events.  They have a lady called Tam Cummings leading the 1-2 hours talks. She has a PhD in Gerontology and she is very enlightening.

fireflies

J Dancer, you sound like you have a good plan.  It just might work.  If I use my cousin I will say something along the same vein.  She used to live in our state and likes to visit each summer for a few weeks.  I've already started to get him used to the idea.  Mentioned that she might be in town while I'm gone and I told her she can stay here in our spare room.  The trouble is my husband is convinced that he can handle being alone himself.  Before I thought he would just be lonely without me around but now think he may need more than that.

fireflies

Gig Harbor wrote:

I honestly think respite care is your best choice because you don’t know what shape your husband will be in by August. By then he might have progressed enough that your cousin won’t be comfortable caring for him. I would book the respite care.     

It is an elaborate plan and seems crazy to have to lie like that but desperate times call for desperate measures. If you choose to have your cousin you need a backup plan in case something happens to her and she can’t come.

Gig Harbor, I think I mostly agree with you. The trouble is I'm afraid the day before when I drop him off at respite care he will refuse to go.  

I would have to come up with another story.  Today is our 45th anniversary.  We don't have the perfect marriage as I see that others have or had on this website but we never got close to divorce either. That being said he has always had the stronger affection towards me in this relationship. If he thought I was in the hospital he would be beside himself. 

If I have my cousin, I will have a backup plan.  I originally wasn't happy that she only volunteered for one week but now with my son stepping up to help too that could work.

fireflies

harshedbuzz wrote:

fireflies-

It's really hard to say. So much depends on the stage in which your DH will be in August when you go. Things could change a lot between now and then. Or not.

 

Just as important would be his ability to complete his ADLs independently and his personality. 

In your shoes, I might try a shorter and closer trip than Africa as a dress rehearsal first. If you are using the friend's services, maybe you could create a fiblet about her having work done on her home and needing a place to crash for a bit. If you decide on a facility, you'll need to create a fiblet that doesn't imply he needs a babysitter. When we took dad to the facility, we created a narrative about seeing a new doctor who ordered a period of rehab at this fancy private rehab center. The staff is used to such ruses and will play along if you give them a heads up. He wasn't happy, but it got him past the door.

Thanks for your input.  You bring up valid points.  I'm normally not impulsive but this trip was booked without much thought of how I was going to make it work.  I should have planned something more local, like in United States or just 7-10 days. 

My husband currently does his ADLs.  I have to remind him to take his pills which is already in a daily pill box.  I also have to remind him to use Depends at night. I plan to transition him into Depends 24/7 shortly as was recommended by the doctor at his last visit. He actually has a doctor appointment at the end of July with his regular internal medicine doctor that he sees every six months. I could maybe work with that to get him into respite care for a few weeks.  

fireflies

Jeff86 wrote:

This is a little eerie, but here goes.

It’s not impossible to imagine six years or more on this road.

So I made a decision that, while DW can no longer travel, I didn’t want to give up traveling for an indefinite period of time stretching endlessly into the future.  An opportunity arose for me to go on safari in Africa, this summer.  And I have committed to doing so.

And so now I, too, am thinking about the care arrangements I need to make for DW in order for me to take this trip.  \

But this upcoming trip, which will stretch to 2 1/2 weeks, I am thinking about how much of a burden I am placing on the aides, who have families of their own, and wondering if respite care is a better idea.

Respite care also has the advantage of it being a dry run, as it were, for potential placement down the road.  It’s possible that DW may actually thrive, with more activities and more people with whom to interact  So if I go with the respite care option, I’ll tell her at the eleventh hour.  

At any rate, I appreciate the challenge you face to obtain coverage/care for your DH.  Your cousin sounds like a viable solution if your DH is stable and accepts her presence.  Good luck with this and let us know how you make out.

 At first I thought it was my letter reprinted until I read further.  But I understand where you are coming from and I was thinking along the same lines that this can go on for years and will I be too old to be able to travel. I guess I was feeling sorry for myself.  I just felt if I can plan a yearly trip or something to look forward to I can handle this daily caregiving role.  And sure enough after I booked this trip I haven't had things bother me.  That is until now when I have to decide how this is going to work.  In reality I think I had blinders on with how he has been progressing.   If I was you I don't think I would have a problem with respite care. Especially as she will not object, but not only that but it could be like a triall as how she would do if you need or choose that route in the future. 

ButterflyWings

Fireflies (and Jeff) - Good for you! 

I declined a respite offered a while back because I didn’t really have anything planned to do with the “time off”, and it seemed like more work and stress to put care plans in place — at the time, I just did not have the bandwidth. 

Also, the option being offered me was really not a suitable one it was clear after my initial questions. A SNF with an open bed would never be a safe option for my DH given his wandering. So, I filed that plan (for a short respite stay) under “maybe later”. I’m thinking later has arrived, for several reasons and am vetting 5 day MC options right now. No safari for me for now, though just getting some urgent things done that are too far to drive to, and I stopped trying to get DH on a plane a while back. But I know how you feel now, thinking through what ifs and how tos.

It is good you have family and friend options to help! Even if they just take care of the house and pets  plus visit your LO at the respite facility for peace of mind. Though it might make him want to leave with them...hmm. Maybe your DS could stay for a week and then take his dad for a respite stay the 2nd week? With your cousin still pet-sitting.

Sounds like you may need to try a short respite stay before August, to see how it goes. Is that possible? For your peace of mind and also a good test run for your 1st choice facility, with you still in town to observe and or resolve anything that may actually need addressing. I think it is wonderful that you are taking this trip! 

aod326

Fireflies - my DH was in an Arden Courts facility and it suited us both really well. I had originally placed him at a facility that was AL and MC, but being MC only, Arden Courts was much better for him. Not nearly as "fancy" as the first one and, honestly, looked a bit institutional, but great care.

Also worth bearing in mind that the thought of it is often far worse than the reality. Who knows, your DH may enjoy a change of scenery.

Good luck and enjoy your trip!

Vitruvius

I retired as it became apparent that my DW needed full time care. 

Before that our travel dreams would have included, Antartica?, Tristan da Cunha? Other far flung places (I did say "dreams"). 

Now I dream of sitting quietly in the backyard reading a book (haven't been able to in years).  Or how about an afternoon nap like retired people supposedly have?

But I digress.  I wish those of you who are able to enjoy any travel you can.  I may be jealous but I don't begrudge you one bit, quite the contrary I applaud you for the initiative. 

fireflies

aod326  Thank you for sharing your experience with Arden Courts. I have an appointment to see this place on Friday. I have others to see too but this is a start. I’m sorry about the outcome with your husband. Those dealing with early onset with any dementia has to be especially difficult. My husband is at stage four and maybe partly in stage five at this point so not ready for placement besides respite at this time. 

Vitruvius, If this trip comes to fruition I will be happy. But we are only talking about 2 weeks out of 52 weeks in a year. The rest of the year I still have him needing me most of the time. I also look forward to reading a book uninterrupted.

I have experienced along with my sisters car camping(suv for me). So nice to be out in nature. Tried it a few years ago with my husband at a park about 45 minutes from home. End up going home at 10 pm that night. But have tried it since without him.  I’m thinking those days are over now too.

harshedbuzz

Fireflies-

My dad's MCF was part of the Arden Court group as well. There were fancier MCF nearby in terms of decor, but much of that was to appeal to those touring and making the decision. The staff at dad's MCF were really well trained and were compensated better than most other places which meant trained staff were retained. One of dad's main aides had been there 21 years, the other 17. They offered activities (for real- some places publish a calendar of things that don't always happen) from 8am-8pm with a break at lunchtime. In addition to a purpose-built facility, they arranged schedules to avoid a "weekend" PT crew. Dad's main caregivers on the 1st and 2nd shifts split the weekends- one worked Tues-Sat and the other Sun-Thur so that there was always someone who knew him in-house during waking hours. 

I don't know if they've changed policies in the last couple of years, but when we looked into respite, they had a 30 day minimum. Perhaps it's a local thing, but almost all the facilities her do a 30 day minimum except a couple of the Quaker CCRCs.

HB

fireflies

HarshedBuzzed thank you for sharing your experiences with Arden Courts. I’m looking forward to seeing the facility. I told them the dates in August and that it would be for two weeks and they seemed ok with that. Will know more after Friday. Also have another facility to look at and may add others to the list. Every time I want to visit a facility I need to say I’m having a breakfast or lunch date with a friend as otherwise my husband goes everywhere with me. This also makes it difficult to even call places to get information as I have little privacy.

This is just his personality with dementia. He is almost always shadowing me. If he would only realize I will have him at home much longer if I can have some breathing space.  

fireflies

Just thought I would update my thoughts about Respite Care during my vacation in August. So far I visited 3 places that will do Respite care.  The first was a few weeks ago. Was strictly Memory/Alzheimer unit.  My sister went with me and I thought it was nice.  Was concerned about him getting lost as it seemed to have a large circle with the rooms. Maybe if I saw it again it would make more sense as for the layout. Plus since it's a Memory care unit they would know to help the residents.  The second one which sounded so good on the website was Arden Courts.  I liked it ok but did not love it.  Maybe if he was further along with his dementia and it was for placement not respite care I would like it more.  What I did like was each section only had around 14 patients, and the layout was where the nurse or aide could see everyone pretty well.  I saw interaction with the residents in the craft room with about 5 people but the other wings just saw the nurse in her area and the patients just sitting. The memory care advisor I talked to just moved to this facility from one about an hour away (same company) . He stated that this facility was less expensive than the one he just came from.  So basically this was his first week here. The price at Arden Courts for Respite care was $275.00 per day.  With this you have to supply the depends too.  The first place I looked at was $193.00 per day.  At the end he asked what did I think.  I told him I was surprised at the price. He said if I was thinking about another place that was less expensive they could adjust the price some. Indicated maybe10-20 dollars per day.  I stopped at one other place without an appointment.  Had to wait about 10 minutes for the advisor to be available which I didn't mind. I might be most impressed with my last stop but may be comparing apples to oranges.  This last unit was an Assisted Living and Memory Care facility.  I was thinking I would be looking at the Memory Care unit.  But with talking with the Sales and Marketing Director she thought he would more likely be placed in Assisted Living.  He doesn't wander. He does all his ADL's but needs help with meds.  I told her he is forgetful and has dementia and she said many has memory issues on the Assisted Living section.  I have to admit the residents I saw looked content.  The place is newer, built in 2017.  I just don't know if his memory is good enough for Assisted Living.  I saw some men walking around.  One sat next to me while I was waiting for the tour.  He had a walker and was on oxygen but was blowing a balloon making a dog out of it.  The salons were doing manicures and the ladies seemed happy and talkative to each other. The price for this last place was $225.00 per day.  

I had looked at one other place about a month ago.  They did Independent Living/Assisted Living/Memory Care but did not do Respite care. Their Memory Care was on a wait list.  That being said they were the most expensive monthly rate. She recommended an organization that will match you up with Respite care with no cost to you. They will recommend places that matches your need.  For now will wait and see until after a May trip that we have with my son and his family.  Most places said they will touch base with me in June. I'm being proactive about this which I am glad but feel as if I have time to decide.  The main reason I wanted Respite at an Institution as I thought the activities would entertain him some instead of just sitting at home being bored. Now may reach out to my cousin to see if she may be an option.

Just one other thought. I believe I'm lucky in the fact their are many Memory Care facilities close to where we live. The four places I visited were all within 25 minutes at the most from our home.

jfkoc

After read all I am left with a couple of qustions.

 Has a diagnosis been made by a neurologist following current protocol? Who will be the agent in the DPOA while you are gone? Have you checked training, contracts, licenses and reports of the facilities you are looking at? How quickly can you get back home?

These are really important for your evaluations.

fireflies

Jfjoc Can’t write much as we are watching our 15 month granddaughter tomorrow and I need to get to bed. I will check more information before deciding on respite care more thoroughly before placement. This is a learning curve as I go through this process. Will visit any place I’m considering again with more questions. 

I did just look up my DPOA and I believe the way it is written that my son who stated as 2nd in priority will be acting as DPOA. There is a statement on this legal document that covers Successor Agents which covers if I’m not readily available to serve, etc.

The question about his diagnosis. Has not been made by a neurologist. A few years ago was going to see one. Upon research the doctor in this area that had Alzheimer/ dementia as his specialty had horrible bedside manners on many reviews, and some bad reviews in general. Ended up canceling the appointment. We go to a senior health group that deals with dementia and are part of a hospital system. They did the testing, blood work, MRI, etc.  

It would be difficult to quickly return home from this trip as we will be at a few camps and some where we are flying in a bush plane. That’s why I’m trying to do my due diligence now. As I stated before it was a impulse decision to do this trip. Might not have been the wisest choice but it is paid for now and I have a group of four of us. I did buy insurance on this trip to cover emergencies for me or immediate family.

harshedbuzz

It's great that you are touring.

I toured about a dozen places for my dad. I live in a well-served area; I actually drove past 10 places on the way to the one we picked which was 25 minutes from my house. I purposely pushed for a place closer to my mom and my uncle.

One thing I noticed was that many of the places that offered both AL or personal care and a secure MC in the same facility took me to the "other" side of the building to tour which doesn't give a very accurate sense of what is available to those behind the locked doors. In some places, the cute coffee bar, library, hair salon and central meeting spaces were off-limits to those in the MCF unless escorted there something staff did weekly for hair and nails only. 

Another thing to be wary of is tiered pricing. Some communities have a low-ball price and will add in fees for additional care. My mom's first choice added additional fees for 2-person lifts, incontinence care (they typically expect families to provide these, but this place wanted extra to change them) and medication dispensing based on the total number of medications taken and times they had to visit the resident's room to give medications. They were cheaper than Alden Courts as a base price but almost identical once you factored in the extras. 

Upselling is another common practice. There's an old saying here that by a time a family is willing to consider AL, that cruise has already sailed and the PWD will need MC. Some places which offer both levels of care will accept a resident into AL on the family's request and transfer the PWD to the MCF at the first sign of confusion or non-cooperation. I have to think this was their plan all along. 

HB

jfkoc

fireflies....glad you have those things covered

fireflies

Harshbuzz, you are correct about being careful about what they show you and what you really need. I went into the AL and MC facility thinking respite would be with the MC. But she told me he doesn’t want to be in MC if he doesn’t need to be. I believe the cost would be the same. But now wished she would have shown me the MC section. Maybe the MC section is currently full at this time and her job is marketing for this facility. The place was beautiful but no set guidelines with the dining. Open dining at any time. My husband would need more structure. It would be a wonderful place if this was what you needed. The workers appeared happy and kind. I know from our travel times that he would have trouble finding his room, etc. The staff would have to be very aware of his memory deficits because he appears very normal for those who don’t know of his condition. As much as I liked the AL it is probably not for him. Maybe I’m asking too much for a 2 week stay but wanted something not only safe for him but maybe where he might actually enjoy parts of his stay. 

I also know what you mean about being admitted under AL then being switched to MC or LTC. I was POA for my husband’s aunt. She was very with it, no MCI for her. When she finally agreed to go somewhere after a hospital stay had me only looking at AL. Unfortunately her mind was strong but not her body so the place I checked out had a very nice AL arrangement but LTC was just acceptable. Tried to do my best for her but she had a strong personality and wanted a say in everything about her care.

One last bit. When in the future if my husband goes to MC full time, it would be MC not AL. I can handle any AL myself.