Memory care- when

LaneyG

I’m interested in what criteria you have used to determine that it is time for memory care placement? My original plan was to keep him to the end if possible. But know I just don’t know. I don’t know how long I can deal with walking on eggshells, the agitation, verbal abuse when I try to keep him out of trouble, driving battles. . He needs me in same room with him at all times. I am a sole 24x 7 caregiver. No children. He has no family local. My family still works. He wants no inside help companionship. Difficult to find time to research and make calls and pay bills etc. Is this a matter of re evaluating meds or is this going to be it? Help.

M1

Hi Laney. This is a very individual thing, in general i think that if you're asking the question, then it's time. Definitely start looking at facilities. i was in a similar situation, could not convince her to allow help at home, and then in the midst of the pandemic also could not find help in our rural area anyway. Our decision was forced by threats of violence over driving, and she required hospitalization before placement. With your other post about medication management, i wonder if the same may happen for you.

Joe C.

In our situation DW no longer recognizes me as her husband or our house as her home and was wandering. I had the doors alarmed but she would still occasionally get out like when I would be in shower and could not to the door immediately. I had been caring for her for 4 years 24/7 with some help from a paid caregiver giver and family members but I was still getting burnt out. I was always the bad guy because I was the one giving her showers, medications and changing her clothes the majority of the time. She also started picking up small objects and would attempt to eat them, at that point she needed eyes on her all the time. I knew it was only a matter of time before something really went wrong.

I was very fortunate because DW acclimated to MC right from the beginning and has never once asked about home. She likes having lots of people around, both staff and other residents. Some things have not changed, she still gets made at whoever is giving her personal care, when visiting yesterday one of the aides said to me “I’m on the $#!+ list today because I clip her nails”, but since there is different aides caring for her all the time she never stays made a one person for to long.

Ed1937

I agree with M1. It's an individual thing. Many people choose MC when incontinence becomes a problem. This was something I was able to handle. What puts one person over the edge may be much easier to handle for another. We're all different. Just don't push yourself too far.

Ernie123

My DW has been in memory care for just over four years. I had cared for her at home for seven years until she had to be placed. Her placement had to happen because she was getting quite delusional and occasionally violent with me and our doctor and family advised me to let go and place her.

I have belonged to two Alzheimer Support groups for about eight years now and your question about placement is a very common issue discussed. Having dealt with placement I have help counsel many people through this transition. Based on my experience and what I have observed in our group I would point out two assumptions that you may be making that aren’t necessarily true. First, that it is somehow better for your spouse to remain alone with you in your home as the condition progresses and secondly that you are capable of providing good care until the end.

After placement, my wife seemed to improve. She enjoyed the social experience of her cottage unit with a small number of residents and a very caring staff. Exercise, activities, music were part of her routine. Gone was the stress and tension of an overwhelmed husband trying to care for her and look after the house etc. Members of the support groups all acknowledge that after the initial confusion of adjusting to a new place, the spouses seemed happier. The social stimulation and structured routine is good for them.

Regarding care, my DW is now in Stage seven. Her care needs are substantial. She requires two PSW ‘s to bathe, dress and change her because she has lost her mobility. Moving from wheelchair to bed sometimes requires a mechanical lift. That level of care is physically demanding and most individuals could not provide it at home. Also there is a nurse on site to deal quickly with any medical issues that arise. If you are home alone with a wheelchair bound spouse, making a trip for a medical appointment is a challenge.

My point is that most Alzheimer patients will require a move to care eventually as their care needs become more complicated and the caregivers abilities are strained. It is better to make that move sooner than later when you are in control of the process and not reacting to a crisis that forces an emergency placement.

You first lose your spouse to the disease and then from your home which is heartbreaking. But having lived through the transition I realize the move was better for us both. Hanging on alone too long, resisting the inevitable is not the best decision in my opinion.

wizmo

I am in a similar place, DW early stage 6, needs constant attention - really comfort care. I have no life outside caregiving. Few people are capable of doing that indefinitely. I have received advice both here and from our care team she will adapt and may even do better with placement sooner than later - while she still has enough verbal and social skills to develop relationships with other residents and staff. She is not incontinent and I know that would be a tipping point for me. Hard to guess when that will happen, planning to be proactive and make the move in next few months. Everyone is different. One thing I keep hearing is take care of yourself and do what is best for you. Go ahead and start the search so you have a plan, even if you do not act on it right away.

ThisLife

It is different for everyone as others have said. I thought mine would be incontinence. After 10 years of caregiving with three years of walking on eggshells, agitation, I was at wits end. I could no longer leave him alone, meaning my life was confined to the house. He was agitated that our son stayed with him once a month so I could go to in-person support group. He was on Celexa which was no longer enough. Incontinence hadn't entered the picture.

/STEVE

I keep asking myself this same question. My answer may change later, but now I will try to keep DW as long as I think the care I am giving is better/same then she would get at a MC place.

Dio

For me, it was a myriad of reasons but the main ones were my safety and my declining health that broke the camel's back. Whenever his Depend needed to be changed it was WWIII and a tug of war to let go of his soiled clothing.When it was time for a shower, he'd grab both my shoulders and shook me like a leaf all the while screaming why was I doing this to him. The hate in his eyes were too much to bear.

sandwichone123

I placed my dh at an earlier stage than many. I am still working and my dh liked to go for walks while I was at work. He would tell me about the places that told him not to come back, and he would tell me about "those kids" and how bad they were. I was afraid he'd get in a fight or get arrested. I tried a day care briefly, but he didn't like it and the hours didn't work well for me, so I placed him.

It was hard at first, but he likes it there and the staff and other residents like him too. He has adjusted well and is happier by far than he would have been if I'd quit my job and stayed with him--no job and no money to do the things he liked. I am also much happier, because I did not want to quit my job.

mickenny

https://alzconnected.org/discussion/comment/194095#Comment_194095

@M1

hello can you share your experience about “Our decision was forced by threats of violence over driving, and she required hospitalization before placement.” How is your LO like once moved to the care home?

My mom is on full delusion now and refuse medication. My dad is on high stress taking care of her 27/4. She is getting more aggressive to my dad and sometimes lash out on him if we try to protect her getting hurt. My mom physically has no issue going to bathroom or showering herself. Will any care home take her in this stage? Or she needs to go thru hospitalization?

AlzWife2023

How do you all afford memory care? My understanding is that it’s not covered by Medicare nor Medicaid.

LaneyG

I keep telling myself that I will care for him until I no longer feel safe with and can no longer keep him safe. But there are those days when I question my ability to maintain my own mental health as I truly feel like a non- person with no life of my own. I feel like the trick might be to keep trying to find ways to keep smiling and put some joy into his day and I can also experience some of that joy. But it is becoming more and more difficult and it is exhausting. So tired.

M1

@mickenny, here is what happened to us. My partner is a very accomplished custom builder who built our farmhouse when she retired in 2008. Symptoms of dementia began in 2014 (age 73). By the spring of 2022 she was edging into stage 5, not recognizing me sometimes. She was overfeeding our animals constantly, even in the middle of the night. It wasn't safe to leave her alone, and i had to hide not only the pet food but also the car keys and the mail, and turn off the ringers on the landline phones to keep scammers at bay. Had put her on a MC waiting list and was looking for home help, though I could not find any in our rural area. One day she asked for the truck keys to go buy pet food because she had fed our two outdoor cats 24 cans of food in 3 days. I had more hidden but refused to give it to her or to give her the keys. She had a catastrophic reaction and threatened to come after me with a knife and tear the house apart. She then went to the barn to continue her search for keys. I called our neighbors and some friends for help, and our neighbor came over on the pretext of borrowing the tractor. This distracted hef, and I was able to give her an extra dose of Seroquel, which she took at bed time for sleep fragmentation. This all happened on a Friday afternoon, and our doctor's office was closed. We limped through the weekend with extra Seroquel, and when i took her to our doctor's office on Monday and explained what had happened, he just looked at me and said "M you just cant do this any more.". He sent us to the ER for psych admission, using the excuse to her that her blood pressure was high.

I have to add that the hospitalization was a disaster because they screwed up her extensive medications and caused acute narcotic withdrawal, which made her combative and resulted in my first choice MC refusing to take her. I filed state and Medicare complaints which resulted in sanctions, but that's another story. She was miserable in the MC facility where I placed her, and so insistent on leaving that i could not visit her alone for the entire year that she was there. Communication with the staff was also very problematic. In January 2023 i asked my first choice facility to reconsider, and this time they accepted her and we moved her at the end of April. She has been much better off there, and now in late stage 5/early 6, she has no memory of our beloved farm or of our 30 years together. Pictures remind her briefly, but she constantly asks where i live and whether she can come live with me. I reassure her that that's the plan. She is an introvert and claustrophobic, so that she does not like most of the group activities; when I am not there she spends most of her time in her room, constantly fidgeting and moving things around, packing up to leave if given any containers (we can't leave a laundry basket in her room for example). She refuses to let anyone besides me to help her bathe or change clothes, so I shower her on Sundays. She is still continent at this point. We had another medical hospitalization this fall that was quite difficult.

That's probably more information than you wanted. It's been a very tough five years, with 21 months now in MC.

@AlzWife2023 : we are private pay for the MC and it is breathtaking, between 9-10k per month. I am very fortunate that my partner made good money in her career and was careful with it. She would cringe at the expense now if she knew about it. She accepts the excuse that she is there for physical therapy and rehab after hospitalization. She has no sense of time whatsoever.

Ed1937

@AlzWife2023 MC is not covered by Medicare, but it is covered by Medicaid. I'd suggest that you meet with a CELA (certified elder attorney) ASAP. They will help you understand how Medicaid works in your state (each state has it's own criteria). The initial meeting may be free of charge, as many attorneys offer that. After your first meeting, you will have an understanding of the criteria for being accepted for Medicaid, and they will also be able to protect many of your assets. They can also provide POA and other legal protections for you. Any questions you have will be answered. Their services are not cheap, but well worth it, as they can save you much more than it costs. Sometimes it pays to check out more than one CELA.

mrahope

I am wondering about this issue, too. My DH is continent, will take medication when I give it to him, and mostly cooperative. He does have anger issues, though he has never physically threatened me with a weapon. He's refused two caregivers that I tried in our former location. He allowed them in the house, but didn't want much to do with them, other than using one of them as a "chauffer" and getting mad when she didn't do unscheduled overtime. He also refused to set foot in the adult day care, even though we'd visited it previously and he'd liked it. I feel like he's forcing my hand re: MC because he's rejected each alternative I've offered. Has anyone tried these services a second or third time after their spouse rejected them?

Beachfan

LaneyG,

My DH was at home with me for 11 1/2 years prior to placement. Like so many others here, I cared for him 24/7/365 and thought it was “easy”. It looked easy because that’s all I did. We followed a routine day in and day out so that he was always clean, well fed, content, and not incontinent (I wouldn’t allow it). Eventually, I missed out on all the fun activities with my kids and grandkids, who lived within walking distance, couldn’t travel to see other grands who lived elsewhere, forfeited outings with friends…..all the while, resentment was boiling beneath the surface. DH was not aggressive or combative, he didn’t wander, he did not know me or the kids; he was just “here” and I never, ever left his side. It did look easy. For 2 years, I researched MCF’s “just in case”, and planned a 30 day respite, for me and for him. When respite time arrived, my kids ganged up on me and announced that DH would not be coming home and the 30 days morphed into permanent placement. DH no longer knew us, he didn’t miss us; he acclimated to MC easily and resided there for 17 months until he passed in April. In hindsight, it’s like a giant blur, days turned into months, months turned into years. I only know that he is at peace, I am at peace; I have no regrets. Best wishes with your decisions; it’s a horrible situation all around.

@AlzWife2023 and @Ed1937 , I am in PA. DH’s MCF was $6200./month, all inclusive, private pay. I used SS, DH’s pension and some accumulated savings to pay. The MCF would not accept Medicaid; to access Medicaid, DH would have to reside in a SNF, “MC wing.” The monthly fee at a SNF here is twice the cost of his MCF; it makes no sense.

ghphotog

Sorry I replied to the wrong part of the thread.

I have a move-in date of Feb 1 to place my wife. I know it's the right thing but I"m still hesitant. She is incontinent and that combined with diarrhea is a total night mare. Not sooner than you get them changed and cleaned you have to do it all over again in a few minutes. That happened yesterday about 6 times.

I though I could hold out longer and maybe I can but my main concern is if something happens to me she would not be safe. It could be weeks or months before anyone notices we are not around and check on us.

There is no way she could survive at all without me. She can't change or clean herself and would just wallow in her own crp until she died of thirst or starvation all the while with my rotting corpse in the house.. Sorry to be so morbid but that's the reality of it. I know that's the reality of it but for some reason I'm still hesitant.

JeriLynn66

https://alzconnected.org/discussion/comment/194263#Comment_194263

While it will be a hard thing, I truly believe it is the BEST thing. The fears are valid. But given time, hopefully you wife adjusts well. And you - you need rest. You are correct to recognize that if not for you, two people would suffer. Please seek peace in your decision. I'm praying for you and your family. It's time to take care of you. Hugs, jeri

Dio

It is out-of-pocket private pay from social security and pension plus 401K. I nearly had a heart attack when DH had to move from shared room to private which increased costs by $5K/mo. I don't know how long our funds will last, or if there'll be enough left for me. But I have to do whatever it takes to keep him comfortable for the rest of his journey. I'll worry about finances when my turn comes. One day at a time.

M1

To expand a little on what Ed said-Medicaid coverage for institutional care varies by state, some will cover true MC but most cover nursing home care. Some require a skilled need to qualify. Very tricky, and why you need to deal with someone in your own state who is knowledgeable.

frankay

My experience has been similar to Beachfan's except the care taking which lasted six years. My DH was also very silimar to hers. My DH was becoming incontinent and unable to walk and needed help being lifted out of chairs, etc. Finding respite for a much needed vacation turned into permanent placement for my DH at the insistence of our children. It has been the best thing for both of us. What I think has been the most helpful has been the socialization with the other residents. I had no idea that being around people was so important to him. He is unable to communicate and is wheelchair bound but he is well taken care of and loves to be around other people and they do communicate in their own way. He was so isolated with only me. It is expensive, private pay ($6.7K/month), but I have my life back and working on getting my health back. If at all possible, please consider placement. Your health and well being is important. Like our children said "We've already lost one parent, please don't make us lose both"

AlzWife2023

https://alzconnected.org/discussion/comment/194232#Comment_194232

Thank you. My DH has Medicaid (thank goodness we never legally tied the knot). So I will explore the MC faculties near me just in case and see what they say.

RickM

Lots of good input in this thread. As you can see experiences differ. I'll just add a couple of notes about when you decide to move your loved one.

While my experience moving my wife from home into MC (respite care that turned into permanent) went smoothly. I had an entirely different experience with my father who lived in another city, on his own, but was having problems and was not safe. He rejected our attempts to provide in home care. Having agreed to a "trial" respite care, once he got to the facility he must have figured what was up because he fled the facility and started flagging cars down out in the middle of the street.

If your loved one is not already on medication to control behavior I would check with his/her physician about having them take something to calm them on the day you move them and, possibly, longer. Also, make sure once inside the facility they cannot get out.

Fortunately, my father eventually settled in at a different facility that specialized in dementia patients with behavioral issues and got some relief from medications prescribed by a geriatric psychiatrist.

Fortunately, my wife, who never has been on medication, went willingly, and, somehow, I think, understood why I moved her. My guess is having helped me with my father and with us able to talk about what might happen if either one of us would end up with dementia was the reason.

She's in hospice care at a facility close to my home. I don't have to care for her 24/7 any longer and now have the time to work on overcoming the trauma of living in dementia land and the loss of my wife.

Finally, I'm not aware of any "criteria" for when to move a loved one to memory care. But I have heard this rule of thumb: "Six months before you think you should".

yearofthedragon

If my LO is independent in terms of her personal care, totally independent with her bathroom stuff, and just forgets things here and there and asks the same questions over and over and can't cook well anymore and hallucinates/believes something that isnt true---- is it too soon for MC? I have been reading through all your comments and it sounds like everyone else's LO were incontinent and way more far gone compared to my LO. I am nervous it's too soon

M1

No it's not too soon. My partner is still continent but was starting to be resistant to bathing when she went to MC. It varies a lot.

sandwichone123

A lot of it depends on other factors as well. I placed my dh earlier than many because I was working but also because he's such a social guy and I thought he'd be much happier around people (and he is).

The first step is just to start looking. If you wait until it's time to place before you start looking you will have much more limited options.

Pat6177

https://alzconnected.org/discussion/comment/194892#Comment_194892

TNT5050, you may find that you will get more responses if you post this as a new discussion thread. Tap on the orange circle on the right that has the plus sign in the center.

There is also a group for new caregivers that has a lot of useful info. Look up at the purple banner at the top and tap on “Groups”.

Briefly, you may want to talk with a CELA (Certified Elder Care Attorney) about the finances of memory care. They can also help you to get the appropriate legal documents in place.

In many areas of the country, fire departments will come to help you get your loved one up off the floor after a fall. You may want to call their non-emergency number to see if they provide this service in your area. They are trained to do it, they are younger and stronger than we are. Save your back!

harshedbuzz

https://alzconnected.org/discussion/comment/195172#Comment_195172

Well, this is a spouse's board and that will skew the answers.

There are factors at play that impact timing of placement.

Many spouses feel that hands-on caring giving is their duty. Some interpret the "in sickness and in health" vow to preclude getting additional help as needed or delegating it even at a cost to their own well-being.

Woman, especially, may feel very competent in their experience as caregivers and believe they're able to provide superior care than professionals could, or they may feel a societal expectation to do the hands-on personally.

As a group, many of the caregivers on the spouses board are older than those who are caring for a parent, grandparent, aunt or older sibling. As a result, many-- but not all-- are already retired or in a financial position to do that if necessary. Younger caregivers with responsibilities to their own marriages, children and careers may not be able to prioritize care at home unless the PWD has vast sums or money or a generous LTC policy.

More so than other caregivers, spouses will be impacted by the financial implications of placement in a facility in a way an adult child would not be.

My aunt became guardian for her older sister who I'll call auntie. Auntie was widowed, childless and living alone 250 miles away at the end of a finger jutting into Casco Bay. She was unable to do her IADLs-- bill paying, driving, shopping/meal prep-- because of poor short term memory and executive function issues. She still dressed nicely and managed her hygiene and toileting mostly independently when she went into MC. Her MC was part of a larger CCRC that also had AL on the floor above. Early in her residency their, she was included in the activities, trips and meals on the AL side because she was still able to function there while getting more help and well-checks on the MC side at night when she generally wasn't as clear. TBH, auntie thrived those first few years before her dementia progressed-- she enjoyed the social engagement and activities and loved having meals prepared for her.

HB