Memory Care- Don't wait to long to place LO

Hoot619

I'm Hoot and I always planned on taking care of DW at home. I hadn't realized how it was taking a toll on me and also on Jan my DW.  It's getting so I can't keep Me under control, I try to do the right things but it just doesn't work out.  DW is constantly hollering at me and I end up doing the same.    Any thing I try to for her I just doesn't go as planned.  I fixed her breakfast French toast and she darn* near threw it on the floor.  As I am watching her on camera she picked up the plate and is eating, 10 minutes later.  Hell I won one!!

My son comes over and sometime she screams at him, yesterday he got a big hug on arriving and leaving. I  got a dirty look at the same time and some yelling .   It is getting harder and harder to things for her.  Changing her showering her you name it and there is just no easy way to do things.  Others have told me maybe it is time for me to place DW and that has been 6-8 months ago. 

What I'm trying to say  is when things start getting difficult it is TIME.   I'm suppose to be a loving and caring husband and it's getting so I'm not the guy anymore.  Even with the help and suggestions from others.    I do get a break about 4 -5 times a week. I go to my 12 step meetings.  But time to go fishing, things I want to do are no more.    

   Hopefully DW will be placed in MC within the nest 30 days. We see the Elder Lawyer on the 22d to sign the papers and will find out the next step.  I have a MC place picked out in Manistique and will stop in on the way home from Marquette with Son to find out more.

   I'm feeling a little better now and if this darn* computer would quit making mistakes I would be happy.   What do you mean it's my fault!!  ha ha  Hoot

David J

Hoot, you are definitely thinking straight. I waited too long, partly because of covid, and partly because I couldn’t consider giving up her care to strangers. At the end of caring for her by myself, I wasn’t doing a good job. I was tired, on the edge of losing my temper all the time, and starting to resent having to give up my life for this d*mned disease. My moods were picked up by my wife and we both were miserably stressed. Neither of has close family to rely on for hands on help. It was past time for the move to MC.

You are wise to pursue MC at this time, before things get worse. 

Dave

JoseyWales

I waited too long, too. When it goes downhill, it goes fast.

In my head I imagined taking care of DH to the end, too. But that plan relied on him being agreeable to whatever we were doing. It didn't include him not knowing me to the point of throwing me out of the house and running away from me. And not sleeping for more than 3 hours at a time.

He's been in a MC for 5 months now. I'm getting back to normal and he's well taken care of.

dayn2nite2

A doctor told me once that by the time someone THINKS about placement, the person should have probably been placed a year before that.

Hindsight is 20/20, hopefully you'll get back to that guy you used to be.

DJnAZ

If you are to the point of considering whether to place your loved on in memory care, don't wait! If you are trying to decide if the time is right, it probably is.

Our situation at home, much like what you have described, was getting out of control. We have no close relatives and it seems our friends began to back away from contact with us when my wife's dementia took over. Trying to find an in-home care giver in the small town area where we live was impossible. Placement was the only solution. This is starting her 10th week.

She went into the hospital with a bad UTI for 9 days and was transferred directly to the MC facility. That was the last time she was home. I had to approve the placement which was perhaps the most difficult decision I have ever made. But for her safety and security and for my health and sanity it was the only realistic solution for us.

Be comfortable with your decision, Hoot. It will be for the best.

jmlarue

I agree with you. Ignoring the idea of placement earlier in this disease progression has kicked a lot of caregivers in the teeth - including me. In retrospect, I should have been actively working on placement for my DH a year ago, before the truly psychotic behaviors of anger, aggression, and lashing out made him a patient to be avoided for most facilities. I accept some of the blame for that, but not all. IMHO, caregivers are playing with deck that's stacked against them for making hard decisions every step of the way. It begins with the vague medical diagnosis of "mild cognitive impairment," and a doctor who ends the visit by saying, "Good luck." In our shock and grief, we're left to flounder about looking for information on what this really means and what we, as caregivers, are supposed to DO about it? The short answer is...we are expected to do everything, to give up everything that might contribute to our own care and comfort, to provide all for our LO.

From the get go, we are indoctrinated by all the standard advice that the caregiver has both the duty and the ability to care for this person, in the home, until their natural death. Just to be sure we don't think otherwise, we face the insurmountable obstacle of financial ruin if we won't or can't. Who in their right mind won't persist beyond their physical and emotional endurance to avoid the financial burden of placing our LO, at a cost of $80,000 or more per year, for an unknown period of time? Oh, sure, there's a safety net of financial help - eventually - once we divest ourselves of the financial resources we worked a lifetime to gather. God help the spouse who doesn't have the cash on hand to hire a CELA to help protect the leftovers for themselves.

Don't even get me started on the hardship of finding a facility willing to accept our LO with bad behavioral issues or dependent on Medicaid for payment. The whole bloody system is badly broken and, like I said, the deck is stacked against the caregiver. Even for those with the awareness that it's "time" to seek placement, realistically, it takes months to actually make the move happen. We can go from just coping to our breaking point during that time. I wish it wasn't so. I wish there was some plan in the works to make this an easier journey for all of us. When a caregiver is thrust into survival mode, like we are, all we can do is seek empathy and support from others like we're doing here. It's not much, but it's all we've got. I hear you and understand what you face each day. I, for one, appreciate your honesty about how truly impossible and defeating the life of a caregiver can become. Maybe it can forewarn the folks who follow behind on this path to beware the giant potholes.

dayn2nite2

To add, I suspect (of course I don't know for sure) that if you place someone BEFORE they become floridly psychotic or slightly less so, when they're just backtalking and the like, that the facility is MUCH more willing to work with the resident if those issues come about later because the staff and the administration are familiar with the resident, they've sometimes bonded with certain caregivers or medical staff, and they are truly viewed as people, versus getting copies of someone's chart emailed over full of bad behavior and psychosis.  That person isn't "real" to them and seems like lots of trouble.  "Sorry, we can't accept them."

I liken this to offering someone a piece of fruit - only the fruit is mushy and bruised and part of it's still good, but the majority has gone off and nobody wants to take it from you.

Jo C.

Dear Hoot, thank you for Posting this, it is excellent input based on experiential wisdom.  And . . . do want to say; you are awesome in continuing on with your 12 step meetings and holding that together which is tremendously important work for your own well- being.  So glad that you have not relegated that to a back seat.  Good for you.

I read the words, "Manistique," and "Marquette," and got a pang of homesick.  Once a Yooper; always going to be even if it is now presently within one's own heart.  Sure miss home - especially in the autumn and springtime.  Not so much mid-winter.  Ha. 

Sending warmest of thoughts your way and so hope that you will be able to gain a care bed sooner than you thought it would be.

J.

T. Slothrop

I have been touring MC places for a couple of months, on the assumption that my DW will need it (as I will) in the future, not certain how soon. But I find it nearly impossible to imagine her being happy at any place I’ve visited, whose costs and inferred qualities range up to $200K annually. There are just too many old people sitting around; the rooms are tiny (compared to our house); and DW is social, physically active, sparkly (if aggressively and misguidedly so).

Meanwhile her shadowing, repetitive questions, and frequent inability to recognize me, are driving me nuts, and my thinning patience is showing, to her. 

Has anyone had the experience of placing their LO too early?

Johns Girl

Hoot my DH was diagnosed about 1 year ago. I am also in recovery 31 years, but it is hard to make meetings. As a result I ended up in the hospital about 3 weeks ago for depression for 5 days. When I got home I discovered that I wasn’t taking any of my antidepressants, I knew in January I quit taking a second one my doctor prescribed after my DH was diagnosed to enhance the other one I had been taking for years. I quit taking it because I was feeling better, and I was worried about the expenses of us both taking so many meds. When I got home is when I found out that the one I thought I was still taking somehow, fell through the cracks. No wonder I was depressed. It all made sense, so I was starting back to my meetings at noon, that only lasted for 1 week. My DH was not wanting to be left home alone, so I was taking him with me everywhere it is starting to where me down. I just need some time to myself. It’s much more difficult to get help, I expected his daughter who lives close to be there to support me in caring for her dad. She was there while I was in the hospital he stayed with her for the 5 days. Now she has gone out of state to help her sister who just had surgery and, won’t be back for a month. I am feeling so overwhelmed. At this time he can be left home for short periods of time, as long as he doesn’t have to do anything except watch a little television mostly Smithsonian and, History Channel. This was a woman’s meeting and I came back with a phone list of about 50 ladies to help stay more connected if I can’t make a meeting. I’m sorry this is so long. I guess I just needed to vent. Reading some of these posts makes me realize how much denial I’m in about this horrible disease.

jmlarue

Johns Girl -  Have you sought assistance through your Area Council on Aging? This is the organization my sister and I turned to when our mother and stepfather needed more help than we could realistically provide to them ourselves. We were doing 2 shifts of 8 hours each - the equivalent of taking on a full-time day job as their caregivers; The social workers helped to get the folks Medicaid approved and that helped with the financial worry and burden of medical and prescription costs for both of them. They qualified for the COPES program and that provided an in-home caregiver for a few hours every day to attend to their personal care and to do light housework (changing bed linens, meal prep, etc.). That respite was a godsend for my sister and me. Those few hours every day where we were free to attend to our own personal needs went a long way toward recharging our batteries. The social workers conducted all the intake process in their home. It took a little time to get the ball rolling on this help, but it proved to be well worth the effort.

ThisLife

T Slothrop - I too have been looking at MC. What really struck me was your comment about "too many old people sitting around and tiny rooms." 

My H is a sullen 4yo. H can do ADL with some prompting. Can talk to people, but, like a person with autism, it is on topics he wants to share info about and no give and take. Questions answered are incorrect information. Doesn't remember anything for more than 10 seconds. He can "take care of himself" - anosognosia. Nice MC in my area is about 72K a yr. We have a three yr. LTC policy which would cover that.

I'm having to push water due to kidney stones and eliminate foods high in iron due to hemochromatosis. After three doctors appts and two tests, I found he is not drinking enough fluids. Don't know why he hasn't had a UTI. I start the day with a measured pitcher for the bare minimum and accounting for fluids in his diet. I'm getting increasing push back from H as I prod him to finish the daily intake. 

I'm going to place him for three weeks, so I can take a vacation. We'll see what happens. 

I get up each day and "put on a happy face." Positive, upbeat, cheerful - Polly Sunshine and walk on eggshells to keep the peace. I "act" all day long and am exhausted each day. 

I thought my placement line was incontinence. Dementia is no joke!

Paris20

When my husband had a stroke, on top of AD, he HAD to be placed. He needs two experienced aides to get him in and out of bed, chairs, etc. We found a good facility and I visit often. However, with distance came the revelation that I should have placed him a year before, because his belligerence, moodiness verbal violence bordering on physical, were really more than I could handle. Now that my husband is no longer at home, I realize that he required 24/7 attention. I was spending a great deal of my time begging, cajoling, and fibbing my way through each day in order to keep him safe, relatively healthy and nourished, and somewhat happy. It took its toll on me physically and emotionally. I feel that now I can start to recapture the person I had been before DH’s 2015 diagnosis. I definitely waited too long.

toolbeltexpert

I have been on the prowl, the sw sent me to look at the best al, mc around. I mean nice. You can live right nice here, even if you don't know it, you are NOT gonna stay in your room they will pry you out. Semi private respite 5100 a month plus meds. No medicaid transfer. It may be a 2 month stay for dw till she qualifies for Medicaid. We lived on just under 14k for all of the last years I worked, if a room doesn't open I could get stuck. But a medicaid transfer mcf is 7500. The Ritz is 5.1k and is 21 miles and the medicaid transfer place is right at 40miles. 

heres my view of my situation

3 months at a medicaid Transfer 7500 x 3= 22.5 k plus meds

3 months at the Ritz no medicaid transfer  5100 ×3= 15.3 k plus meds

I am basing a three month window, she could qualify  in as little as 2 months or even less. I have been told ours is not a complex case. The only thing that could slow down approval might be my spend down, which will be just before 2 months at the Ritz..  Sorry I use the term Ritz. It is well staffed and well thought out. A local pharmacist founded this place and another just as nice. And yes he is the pharmacy they use exclusively. Open about that as well.

My dw getting covid today threw a wrench in the works, I never would have believed she would get covid in there, with the strict rules about time and days, masks for everybody but the patient. 

Why is it, they are so much cheaper and soooo nice?

Now the logistics are taking a toll, it's wore me out emotionally having to pick out her stuff, her favorites. This part is as hard as any I have faced, but dear sil is the greatest listens to me for hours. She know everything that happens and has supported me so much. As have all of you. 

This post just reinforced my need to let go, 2 hands are better than one,so are 10 people trained to do this job and they get to go home, I do know they carry some baggage from doing it for many years. I have meet a lot of good cna's lpn ,rn. 

I think letting go of some control of the caregivers job and getting others who have a passion to do it, let them. I find no shame in saying I have to let go. Someday one of us will let go when the other dies. But today I might have to let go of 5k.  Cheap enough as they say around these parts.

jmlarue

TBE - Perhaps I have it all wrong, but I was led to believe that a facility willing to accept Medicaid will also be willing to either wait for the retroactive payment of several months to come from Medicaid or you might be required to pay for a few months out of pocket, but that money will be returned to you when the retroactive payment comes through. Do you know what amount of spend down might be required? I would suggest you have another conversation with the MCF to find out exactly how payment will work. I should think it would be better not to have to move your DW more than once. And, if you don't need to pay out of pocket for a few months, then it makes sense to make the move only once. One thing I haven't seen in your posts is mention that you have consulted with an attorney about qualifying for Medicaid and protecting your assets. If you'll likely be forced to spend down any of your assets, it would be better to spend some of that money now on legal advice. I hope you've done that.

toolbeltexpert

Jmlarue good questions. I have seen a cela. I waited to long in the process to do much protecting. The only thing I could have done was put the farm in my name alone. Medicaid recovery if it is used will get back what they spent. In Tn there is no reimbursement if I pay either way, private or a Medicaid facility because of the spend down.I want her to go to a facility from the geripych so that's my only option  I already know my spend down amount, I already paid for the funerals, so the leaves me about about 10k. I could use it to upgrade my car. Or I can use it to personal pay for a couple months. Buying another car would benefit me but not DW. Either way I have to spend that money before Medicaid will kick in that can slow down my application process, My questions for the folks at the area agency is, can DW transfer directly to a Medicaid facility. It's my understanding she has to be in a facility to get Medicaid.  I want to be sure that's this is gonna work. My Dw SW is still only sending referrals for al. The AAA d folks have already sent in a TN care choices medical application and the scored her much higher, where she will be qualified for "Nursing Home" memory care not assisted living memory care. It's way to confusing for me. The SW keeps telling me she doesn't qualify for nursing home care. Me and him don't see eye to eye about this, today the AAAD  folks are gonna hear how it's still being handled.  No worries I'll be broke in short order.But I can laugh about it cause I never expected anything grand in my old age. Just spending time with my honey.

The only bad in this plan and you brought it out is another move. I have seen a decline where she is at now and expect no matter where she goes it is gonna happen, That is why I am still looking for the final move place first. 

Our system is broken big time, and we are the ones who can speak up about it. There are some stupid laws keeping me from getting a good choice. 

Nothing easy about this part like picking out her clothes or watching her decline, not being able to see her now. I called last night to talk but it was shower time. Well I gotta go the cats are feed and so am I, now it's time to prowl around again. 

Foot note if I am wrong  about anything I think I understand and that's a possibility and you have the information feel free to share it.

 I always appreciate everyone here. and I take lots to heart.

Stewart

toolbeltexpert

Jo C. wrote:

Dear Hoot, thank you for Posting this, it is excellent input based on experiential wisdom.  And . . . do want to say; you are awesome in continuing on with your 12 step meetings and holding that together which is tremendously important work for your own well- being.  So glad that you have not relegated that to a back seat.  Good for you.

I just want to say thanks hoot, I agree with Jo c, this is a topic that has lots of good experiences. I am still trying to navigate this part. 

 Hoot that is awesome, you can take care of yourself as well, it's easy to fall in despair. I am proud of all the folks who are recovering and doing super human care for their lo.

May flowers

T Slothrop, if you are seeing people sitting around and no activities and interaction with each other and staff - keep looking! My FIL’s MC was upbeat and vibrant, and there was always something going on, yes there were people sitting in chairs but if I stayed around enough, I would find the would perk up and talk, do an activity, and some would sleep again. Mornings had more downtime (everyone slept after breakfast lol), but afternoons were much more active. 

When his facility flooded he was moved to one just like you described, no attempt at all to engage the residents, who were just languishing and it was sad. I left wondering why I was paying MC prices for nursing home care. 

Anyway, to the original post - we went with earlier rather than later. He could do all his ADL’s, , was mobile, could communicate and was continent. He did just fine and made friends with others near his level.

Ernie123

My 2 cents: I agree “don’t wait too long to place.” We all want to keep our LO at home as long as we can. And some dementia patients are calm and easier to care for than others who develop  challenging behaviors earlier. My advice is that everyone needs to at least start planning for the eventuality that a move will occur, even if things seem to be going ok. Visit some facilities, put your name on waiting lists. You can always turn down an opening if not needed. But then you are better prepared if there are sudden changes that as a caregiver you cannot handle alone. 

Another point to consider: your LO  my improve somewhat in the social environment of a MC facility. My DW has been in MC for three years.  The constant social interaction with others, limited as it may be because of her condition, stimulates her and gives her comfort. She wants to be out with the group in the common living area when I visit, not alone in her room with me. 

Prior to her move life was difficult for us both being alone together 24/7. She was becoming delusional and paranoid and would no doubt sense my tension and  anxiety trying to calm and distract her. These psychotic issues led to her being placed earlier than I had hoped, but I had her name on a waiting list for a new facility that was just opening nearby. I am so glad I had made contact there and made a tentative reservation. Once she moved and her psychiatrist adjusted her meds she was much more content living in the moment in her small social group of residents and PSWS. Lots of activities, music and less tension in the air.

Three years have gone by and I am still quite lonely and miss the wonderful marriage relationship we had shared for more than five decades. But I accept the transition was necessary for us both and postponing it until there is a crisis is never a good idea in my opinion.