Did you keep your LO home too long? Then what?

blues · February 7

Fellow travelers: I recently learned that a PWD may have progressed beyond a point where Memory Care will take them. I've always assumed that at some point I might need to put my DH in Memory Care, but the idea was always to have him stay home as long as it was not too difficult and/or expensive to care for him. (I work full time, so I hire aides part-time to assist.) My DH can now meet the minimum competency for the MC I prefer, but at some point (possibly soon) he may not be able to. Thus I find myself feeling pressured to make an imminent decision about Memory Care: either (1) send him earlier, before I feel that I cannot cope with home care, just to get him in the door (they say once in, they will still care for him if he loses the minimum competency); vs (2) let him stay at home, where he's comfortable and the amount of outside help that is needed is manageable financially for now, but may well become prohibitive later, not to mention the loss of privacy for me. Note that some of the plusses of memory care (like social, activities) are not likely to be of much interest to my DH who spends most of his time snoozing or listening to classical music.

Do any of you feel you waited too long to place your LO? Or did you plan for home care and then regret that decision because it became overwhelming or inadequate in some way? I am interested in others' experience and reflections, not so much advice. I know every family and PWD is different!

RetiredTeacher · February 7

I cannot help you as we are not there yet. I will be interested in the answers you receive. I had no idea a person could be too far along to qualify for memory care....if that's the case, then what???

Timmyd · February 8

I live in an area where there are multiple MC options nearby. I visited a few to get familiar. They were all being run as for profit enterprises and it felt like some of the sales people were employing some pretty high pressure tactics. Having investigated several nearby facilities in our metro area, I was left with the belief that no matter what level DW devolves to, there is always some facility available. Perhaps I am naive. The places around me seem eager to fill their space and their sales people have been relentless in trying to get us in. In my area, I am left with the impression that if you have the money, there is a facility that meets your needs. I did ask the facilities I visited about minimum competency and they never expressed a concern.

I realize that this situation can vary greatly based upon where you are at.

I am also very interested in reading other experiences on this issue. My feelings right now are that I would rather regret being too late putting DW in a facility instead of regretting too early. My feelings are subject to change.

blues · February 8

Just to clarify… my understanding is that there is always a nursing home (no minimum abilities assumed) but that is not the same as Memory Care. Nursing home care is not usually covered by an employee health plan or by Medicare, if used for custodial care (as opposed to recovery from a medical condition, say). And nursing homes are much more expensive than Memory Care (as they are better staffed with higher paid personnel, i.e. many nurses). Many also have a terrible reputation: one advisor I spoke to said "you never want to go to a nursing home here". It's possible that what memory care units accept is variable geographically, the person's welfare, the financial burden (even with longterm care insurance which has a maximum payout per month typically) and the spouse's peace of mind could all be affected.

tonyac2 · February 8

Where I live, my DH does not qualify for memory care because he cannot stand and pivot. So, be it too early or too late doesn’t apply to us. He’s home with me and thankfully we’re on a program that helps with in home care. He can feed himself and brush his hair - that’s about it.

persevere · February 8

Same understanding as tonyac2. If they can’t pivot to get into a wheelchair then they won’t qualify. I think sometimes if they lose the ability while in MC they may make exceptions in some cases. Also, I’ve heard of places not accepting patients with extreme behavior issues. I’ve seen stories on this website. Yes, the very last stop is a nursing home.

Russinator · February 8

Following

blues · February 8

https://alzconnected.org/discussion/comment/265556#Comment_265556

Yes, exactly what I've been told. They try to keep the person in MC once they're in, ideally to the end of life. But this then means that if one's PWD is approaching the end of their ability to pivot and transfer, then one is caught either committing to MC at a time that may feel "too early" or one is caught keeping them at home, and burning out on the later stages of the disease, at which point nursing homes are the only option, and terribly expensive.

Timmyd · February 8

https://alzconnected.org/discussion/comment/265589#Comment_265589

I am by no means an expert on this and I expect your decision needs to be driven by the specific facilities available in your area, their costs and policies. These are just some of my thoughts on the subject based upon the nearby facilities I researched.

MC will try to keep PWD until the end, but they can require the patient be moved if their care needs exceed the capabilities of the facility. Even if one goes the MC route, there is still a chance they end up in skilled nursing.

MC rates are month to month and often subject to change based upon the amount of care a patient requires. For high need patients, the cost of memory care and skilled nursing was not always that much different.

Every day you keep DH at home is presumably money saved by not being in MC. You can think of that money saved as offsetting the increased cost of skilled nursing if you do eventually need placement.

I myself have not been good at anticipating the future as it relates to this disease. The problems I face are often much different than the future problems I had imagined. Because of that, I am very focused on making today the best possible day for myself and DW.

The decisions you are facing seem enormously difficult. I hope to never have to face such a decision. Of the 6 ADLs, mobility is the only one that DW has no problems with. Each of the other 5 are severely compromised. Whatever you decide will be the right decision. Do not doubt yourself and your judgement.

White Crane · February 9

My DH had been in MC for two years. Last year, I looked into moving him to a different MC facility for reasons I won't go into here. The facility was very nice and I was impressed with the staff and the director seemed eager to have him as a resident. I was on the verge of notifying his present MC when I was advised to wait until I had confirmed with the new facility. I am so glad I waited! It turned out that the new MC, although they were very nice and encouraging, had decided not to accept him as a resident.

I wanted to add that before DH was placed, I had toured one other MC in our city. It was a private pay facility that did not accept Medicaid. It was very nicely furnished and the admittance director was very encouraging and friendly but they did not lift and they did not feed residents. All residents had to be able to get up on their own and to feed theselves. If they reached the point they could not, then they would have to leave.

Then I toured the MC where DH is now residing. It is clean but not fancy. The staff is very friendly and competent. They accept Medicaid. The monthly charge is all inclusive. They feed residents as needed and use a lift to get them from bed to wheelchair when needed. It was the best choice for us.

There is so much to consider when placing a loved one. Please tour some facilities. Ask lots of questions. Drop in unannounced to observe how the staff is interacting with the residents. You are the only one who can make the decision to place your spouse. In our case, I had known for some time that he needed to be placed but could not make myself do it. It took him getting ilI and the doctor telling me I could no longer take care of him to finally get him to MC. I will say though that if I had waited much longer, both of us would have been harmed. My health was being compromised and he was needing more help than I could provide at home. I hope some of this helps.

Brenda

harshedbuzz · February 9

@blues

This is always a risk when deferring placement into an MCF. You're living one stroke or bad fall away from needing to place in a SNF which is more expensive and would likely lack dementia-informed care. Often, PWD need to be ambulatory and self-feeding on admission to a memory care community. But even that is not a hard and fast rule. Auntie had a stroke just before admission and entered her MCF as a new user of a wheelchair scooting along with one leg. As her dementia worsened, her guardian-sister hired someone to hand-feed at lunch as staff allowed only 30 minutes for meals and auntie would eat for longer if supported in the task.

That said, touring is the best way to get a sense of how things really work. Even places that allow residents to age-in-place typically require family to hire additional private-pay caregivers or bring in hospice.

HB

???? · February 10

My wife's Neurologist recommended that we meet with a Dementia Care Navigator. So we met with her over a year ago. We talked about what our wishes were and she recommended three care facilities in our area that had both Assisted Living and Memory Care. Both my wife and I toured all three of the facilities. They all were fine, but I had my wife rate them. Fast forward to now, we recently put down a deposit down to put my wife on a list if a room came available. She is not quite ready to go into MC, but we are on the list. If they call with an opening, we can turn it down and keep on the list. I would suggest touring some facilities and have a list of questions to ask them. All three of the facilities here will keep them to the end. As the care level increases so do the costs.

persevere · February 10

one last comment. Many cities and even small towns like mine have small, limited bed facilities. One called Beehive is national I think. The one here has 16 beds. They are set up like houses. Very quaint and warm. And it was actually cheaper than the larger luxurious places. I highly recommend looking at these if one is close by.

howhale · February 10

https://alzconnected.org/discussion/75306/did-you-keep-your-lo-home-too-long-then-what

So sorry that you are facing this decision. The suggestions and cautions from others fit with our experiences. I will offer a couple points. My father-in-law, needed assisted living but we knew memory care was likely on the horizon also so we picked what we felt was a good facility. He moved in the AL side and things went okay, until we noticed clothing missing, personal items missing, etc. When he needed MC, they moved him to a room on that side. Staff seemed fine but limited. We were told he could stay there until the end, costs increasing as needs did of course. We realized he was not receiving his medications as prescribed and asked. Were told he was. We hired another care service to sit with him overnight and quickly found out all the deficiencies being hidden. This facility was new, very nice atmosphere, resort like, etc. We had to find another facility. We quickly learned to stop looking at what they wanted us to see and look deeper. We looked at tenure of staff, number of staff, interview other families, walk the halls and any odors, look online for feedback, eat the food served with the residents. In other words look way deeper than the surface or the sales stories. We found an older, not fancy, facility where the staff had been there for 25 and 30 years, some residents had been there for 25 years, the food was good, there was never an odor anywhere even with doors open, etc. He stayed there until he passed, as did my wife's aunt also. In my dear wife's case, I wanted to care for her at home all the way, but at one point looked at facilities and she had progressed beyond what any would accept which worked out because I found ways to manage. But it does support what others have said. A very hard decision and you almost cannot do enough probing to find the right one. Just look below the surface and the sales pitch.

tboard · February 10

https://alzconnected.org/discussion/75306/did-you-keep-your-lo-home-too-long-then-what

I am going through something similar. I have kept my DH with mixed dementia home and I have cared for him with little outside help. I ended up retiring 5 months ago and am a full time caregiver. In the last week or so he won't allow me to change his pull-up or get him out of urine soaked clothing. He often refuses to take medications and he refuses food. (I prepare food and put in nearby and he eventually eats it)

Yesterday he soiled himself, and slept sitting up in a chair. In the morning I could not get him to stand up. I called the paramedics. He spent the night in the hospital. They are strongly suggesting that I can no longer care for him at home. They might be right. He fights me every step of the way.

Memory care facilities in my area are very expensive. He will be assessed today and I will have to make a decision about who and how he will be cared for going forward. He may go right to hospice care. I think I did keep him home too long but I think it hurt me more than him. I'll will find out or figure out the "then what?" today. I couldn't sleep last night so it will be interesting to see what I decide or agree to.

Maybe I am so tired that I stopped making good decisions or maybe after 45 years of marriage I got in the habit of taking care of my DH and I can't break the habit. I feel like no one really cares about people with dementia except for their families or friends.

tboard · February 10

I keep a care journal and at the top of each page I write $325 because that is about how much I would spend each day to have my DH in memory care, I have been saving up for the day that I can no longer provide care for him and that day is soon. Maybe even today.

annie51 · February 10

@howhale is right that you have to look below the surface. I was lucky in that I chose one that was a little older and not as fancy but it had a very homey atmosphere, a beautiful walking area outside with trees and landscaping and gazebos accessible to the residents, no smells, many long-time staff. It was the most expensive but they would keep residents to end of life and the price didn’t increase with the amount of care needed (although there were annual small increases but maybe negotiable). It’s a very difficult and very personal decision. I think that if home care needs to be 24 hour, MC is probably a cheaper option. Whatever you decide for you and your DH, don’t fret about it. It will be the right decision.

Zappa · February 10

https://alzconnected.org/discussion/comment/265734#Comment_265734

My heart goes out to you, it is so incredibly difficult to finalize a plan and the costs are so high…that adds more stress to an already stressful situation

blues · February 10

https://alzconnected.org/discussion/comment/265734#Comment_265734

This is heartbreaking. I am so sorry. I hope you find a good solution for you both.

countrywife · February 11

My DH received the diagnosis of AD about 10 days ago altho he was diagnosed with dementia about 6 months ago. He understands he has memory issues but hasn’t actually said the words AD. He no longer can drive altho is able to take care of most all his ADLs. I’ve long been the one to cook, handled financial matters, etc. He read a pamphlet from a medical office on dementia in which it mentions the chance of moving out of the home for care. So now my question, how did others bring up the subject of future memory care and possibly touring facilities, and at what point? While I know things can happen very quickly, it seems like a lot can change between now and then with regard to touring facilities. We have an AL facility in our small community but anything else is more than an hour away. We have children living in communities approximately 3 hrs away.

Michele P · February 11

https://alzconnected.org/discussion/comment/265775#Comment_265775

We were advised by our attorney and family members to come up with a plan b in the event I could no longer care for my husband. We both toured assisted living/memory care facilities and selected one. We put down a refundable deposit to be placed on a waitlist. You might have to tour these facilities alone. It was one of the hardest things we have done together. I cried at the facilities and for hours at home after, but it is necessary. The wait for placement without being on a waitlist can be over a year.

H1235 · February 11

https://alzconnected.org/discussion/comment/265775#Comment_265775

I think the conversation you have with him about a facility really depends on him and where he is at. My mom was thankfully willing to sign legal papers, but felt the need for a facility was so far down the road there was no rush to talk about it. At that point the doctor had said she was not safe to live alone and we had moved her in with my brother who works full time outside the home (this living arrangement wasn’t going to last long). There was no convincing her a facility would be necessary. She figured she would be fine with my brother til she couldn’t feed herself and didn’t know who anyone was. Unfortunately her anosognosia meant she was at risk of trying to do things that were very unsafe. I would tread carefully. If he is open to making plans for the future, great, if not you may have to tour facilities on your own. I would not push him to participate in planning.

Lilydaisy · February 11

So many different experiences. You have all had difficult challenges, and thanks for sharing. I suspect there are others like me who intend to have our LO at home "as long as it's reasonably possible." The problem is that we likely don't know when that is until it is staring us in the face. I imagine a little early is better than a little late. Best wishes to you all.

Timmyd · 2:14AM

I am trying to imaging a future where there is no such thing as too early or too late. There is just a time where a decision might be made, and that becomes the right time and the right decision. There are so many things about this disease to feel crappy about, I am trying not to add "too early" or "too late" to that list. I do not know if I will be successful with this particular aspiration.

Did you keep your LO home too long? Then what?

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