Time for Memory Care?

Russ W

Hi,

My dad (78) has AD and is around stage 5-6.  His symptoms may be a bit atypical, in that he is mostly non-verbal (talking mostly in short, pre-programmed phrases) but shows zero physical symptoms or personality changes.  He bowled a 180 last week, but forgets basic hygeine activities and struggled to remember his birthday when we talked a few days ago.  But he asked me how my knee was (minor surgery two weeks ago).  Last week my dad had trouble showering and my mom had to help him with soaping/scrubbing - first time she's done this.  And she supervises his brushing his teeth, shaving (with an electric), choosing clothes/dressing, etc.  They are going on vacation out of state with my sister in a week, and that'll probably be his last time on a plane.  

But this post/question is going to be mostly about my mom (77).  Together they moved to a continuing care center 18 months ago, into an independent living apartment.  She's his primary caregiver, but has daytime caregivers several days a week and friends help out taking him to activities.  She works part-time (16hrs/wk?) and has several hobbies that he can no longer join, such as playing bridge and golf (the golf is a ladies' league anyway).  Mostly the caregiving is just someone to hang out with him/watch him.  All of the "care" falls on her.  I live a half hour away and see them about once a week.  I work full time, and am single.  My sister lives 6hours away and is married/has kids. 

My mom thinks its about time to move him to the memory care center because he needs more care than she's able to give him. This bothers me because she's still physically capable of caring for him, just not emotionally capable.  And, because he's still "there" enough that he's going to know.  

My mom has struggled with depression and anxiety throughout her life, but it has rarely been outwardly severe enough to be noticeable to me.  She's generally been medicated, but I don't know how well and exactly how long.  I'm starting to learn more about it.  At this point her GP is rubber-stamping her prescription and she's self-regulating it despite also having a thyroid condition (recovering) that also causes anxiety.  She wants to reduce her medication level, but she refuses to see a psychiatrist to check her levels or a psychologist for an alternative treatment to medication.

I'm frustrated because I believe she could do more/better for both of them, but refuses to try other things.  She also chooses the approach of correcting/admonishing him over the standard approach of "living in his world instead of yours".  She understands the harm in this and understands that at some point his personality might change to where he starts resisting this, even physically.  She refuses to adjust.

I want what's best for each of them.  When one person is sick in a relationship, the other makes sacrafices to compensate.  But while I'm disappointed by the level of physical effort she's willing to take, I also understand that mental illnesses are real and this is taking a real toll on her (not that it doesn't take a toll on people who are fully emotionally healthy).  Ideally, I'd like to get her to improve her mental health care, which will almost certainly help both of them.  But even if it doesn't, at least she will have tried. 

Most of all, I don't want the last conscious feeling my dad has to be abandonment. 

Thoughts/advice?

terei

You have no idea how stressful, mentally + physically this is on your mother. I suggest  you  take a week off + stay with your dad for a week 24/7 with your mom gone on a little vacation.   I think you would have your eyes opened + begin to support your mother’s wishes instead of judging them. Their relationship is no longer husband + wife.  It is caretaker + patient + it is exhausting.

 Maybe you should look at this from a different perspective.  Instead of thinking placement is something your mom is DOING to him, it is something she is doing FOR him.

Your father is not going to get better.  He may do very well in a more social, structured atmosphere. You might be surprised.  In any case, if, after a few months, the move to MC is not working out, for whatever reason, there is nothing keeping the family from moving him back or trying another MC.  

Mlewis501

I agree with the response above.... this disease is exhausting.  If you do not walk the walk 24/7, you may not understand how your mom is feeling.  I am sure it is very hard for your mom to ask about putting him in memory care.  Just really try to listen to what she is saying....

King Boo

I am sorry your father has this disease.

Unless one is the caregiver, looking in from the outside does not even begin to give a glimpse of the stress, burnout and health decline of the caregiver.  It is intensified if it is the spouse.

The symptoms of Stage 5 are frustrating enough to take a saint down. It is frequently at this stage that placement occurs.

This disease can take an entire family down, even with multiple caregivers.  Which Mom does not have on a daily basis.  Her age alone would benefit from you realizing at 77 she should not be doing the heavy lifting.  

It will help if you realize you are speaking from a place that focuses on your very valid sorrow and loss of what used to be.

There's a new reality now.  Your parents are elderly, Dad has dementia.  

The very good positives in this situation are:

1.  Mom is recognizing that she is approaching the end of productive caregiving.

2. She is willing to do something about it by placing in Memory Care which will enable her to  :

a. be a wife at visits she will enjoy as best as possible because

b. the weight of the world is not on her shoulders as primary caregiver

3.  For Dad - a better quality of life can be coming if Memory Care is a good facility.  Dementia specific activities, caregivers and a smaller environment has the potential to translate into a bit of a temporary improvement for him in therms of quality of life. 

Do not do the extreme dis service to your mother by mentioning or blaming her anxiety or depression.  Dad has the degenerative disease; Mom's mental health has been there all her life and to do so is going to extremely damage your relationship with her.

WWID?   Reframe this in a positive light and support your Mom.

Better days could be coming for both of them - and for you.

This is not your decision to make.

Support her.

The abandonment thing is your spin on it.   The fine art of fiblets can make our LO's feel loved and supported.

"Your doctor needs you to get stronger for the winter, we found a place with a good chef, you deserve it" is the approach one takes.  NOT "Dad, we're leaving you because we can't take care of you anymore."

[Deleted User]

The user and all related content has been deleted.

Marie58

Russ, you sound like a loving, caring son who wants what's best for both of your parents. Bless you for that. However...you truly don't know what your mom is going through as a 24/7 caregiver. I was my DH's sole caregiver until I placed him in MC 17 months ago. He was 64 and I was a healthy 62 year old at that time. In the beginning of this journey, I figured I could keep him home longer because I'm relatively young and healthy. But then reality sets in. Doing EVERYTHING for your spouse and EVERYTHING else that needs to be done to run a home is exhausting and stressful to say the least. No matter how young, healthy, and in love that you are, it's very hard. My son and daughter-in-law saw how the stress and lack of sleep, not to mention safety as my DH is much bigger than I making some of his care physically difficult, was affecting me. I'm usually very patient but was starting to struggle with patience, even with my sweet, sweet grandchildren. My son and daughter-in-law were actually the ones who brought the idea out in the open, even though I knew it was a possibility all along. I was sleep deprived and physically drained and not always thinking straight. The struggle is real. I like terei's idea that you give your mom a little respite and see how it really is. A week would be good. You might not see what she goes through if it's only a day or two.

This is strictly from the caregiver's perspective so I'm not saying it's time or not for MC for your dad, but please support both of your parents as best you can.

GothicGremlin

Hi Russ --

-- My mom thinks its about time to move him to the memory care center because he needs more care than she's able to give him.

This, absolutely this. I have said these exact words about my sister, and this is why I moved her to memory care.

I agree with what everyone has said above. Taking care of a person with Alzheimer's is emotionally and physically draining, plus you're always "on".  There's no rest. 

Early on in my sister's disease (when we could still have a conversation that I was confident she was understanding), we discussed assisted living and memory care. Her greatest fear was that if we moved her to memory care that we'd just leave her there, and forget about her. I promised her I'd never abandon her, and I haven't, and never will. So I get how you're feeling. I've felt the same.

If your mom moves your dad into a good memory care facility it can be very good for him. Looking at my sister, I can honestly say this has been the case for her. They have structure, activities, and family and friends are encouraged to call and visit - which we do. Peggy has told me that she likes living in memory care. She doesn't have the wherewithal now to lie about this, so I believe her.

And like others have said, if memory care doesn't work out, you can always bring your dad back home.

Vitruvius

This is a supportive forum so I will try to respond in that vein.  I am a caregiver for my DW and have never intervened in the caregiver forum, but feel compelled to respond.

You have stated that you think that a spouse should make sacrifices to ensure the best care for their LO.  I wholeheartedly agree.  The question is what in fact is the sacrifice that will in fact provide the greatest quality of life for both parties.

Over on the spouse's forum several spouses have recently placed their LO in and MC, and the reports back are uniformly that this has improved the lives of both parties.  I have read, mostly in the caregiver forum of LOs who are unhappy about their placement, I don't know why that is but I suspect it is because those were parents or other relatives who by necessity were placed when they were earlier in their dementia.

You think your dad show zero signs of dementia, but it is not uncommon for those who see their LO infrequently to see that. The PWD can often "showtime" for short periods and seem better than they actually are, often much better.  Also a lack physical symptoms is also not usual, My DW is far along but still very fit.

You indicate that your mother is not dealing with your dad per the best practices of dementia care.  Rather than her lack of willingness to properly caregive, it may be an indication that she has reached the limits of her own abilities to adapt to the stress of caregiving.

I am both physically and mentally very fit, and much younger than your mother.  I am the sole caregiver for my DW with advanced dementia.  I have related previously here that all the physical things I do for DW are very little burden at all for me and I bear them without concern.  Why?  Because I feel I am doing something productive for her care.  The "living in their world" issue however is absolutely soul-crushing.  The shadowing, sundowning, delusions, meaningless conversations every waking hour is mindbogglingly draining.

Please look deeper into the placement of your father, from all sides.

May flowers

I agree with all that’s been written by others, but wanted to add this. At my FIL’s facility, there was an independent living wing and MC wing. We knew at least two spouses who lived in the independent wing who had loved ones in the MC wing. It worked out well for them, they could visit and eat meals together, but the staff handled the more difficult issues. As others have said, the dementia patients at one point need a lot of structure and 24/7 care. Our facility had activities all day and a common area, residents were taken from their rooms and to different activities throughout the day. They never had time to sit and feel sad, they were busy and engaged all day. Even if they didn’t participate, they were still there. 

We weren’t sure how my FIL would like it but in the stage he was in at the time, he liked it. 

Stuck in the middle

Russ, as a caregiver who suffers from depression, my thought is that your mother IS doing the best things she can do to improve her mental health.  She is working, playing, and engaging with others.  And she is placing her husband where he can receive proper care.

What would you have her do as your father progresses?  Give up everything that gives her pleasure to sit at home with a nonverbal man, waiting for your weekly visit?

May flowers

Stuck, you make a very good point. Mental and physical health! My MIL completely exhausted herself and withdrew from everything to care for my FIL. We finally convinced them to move near us so we could take some of that off of her. A month after the move she was dx with stage 4 cancer. She had been suffering a while but all her efforts were focused on him and she did not pursue help for herself. I fear that is the case for all to many caregivers. You have to take care of yourself.

King Boo

 Welcome.  The dementia journey is never straightforward.  It is fraught with twists and turns, and the very long history of family relationships and dynamics.  It is a challenging time, because to make good care decisions, they need to be 'clinical' ones, and not emotional ones grounded in past family dynamics and resentments.  I feel deeply for you - family complications in the past make the now much harder.  A lot of what you write I identify with - some of it I could have said myself at the beginning of my caregiver journey.  And I have weeped and agonized (and subsequently recovered from) the hypotheticals, shoulda, coulda, wouldavs I place on both myself and other family members.   The sooner you can embrace what actually is, and not what you think things should be, you will be in a good place to help Mom and Dad.  Please read on for some input.

QUOTE:

My dad (78) has AD and is around stage 5-6.  His symptoms may be a bit atypical, in that he is mostly non-verbal (talking mostly in short, pre-programmed phrases) but shows zero physical symptoms or personality changes.  He bowled a 180 last week, but forgets basic hygeine activities and struggled to remember his birthday when we talked a few days ago.  But he asked me how my knee was (minor surgery two weeks ago).  Last week my dad had trouble showering and my mom had to help him with soaping/scrubbing - first time she's done this.  And she supervises his brushing his teeth, shaving (with an electric), choosing clothes/dressing, etc.  They are going on vacation out of state with my sister in a week, and that'll probably be his last time on a plane.  

Welcome to the discussion boards, where many are happy to help and give insight.  Some of us are still deep in the journey, some are through it and have hindsight.         The above description of your father can be part of Stage 5, in some ways the most difficult stage of Alzheimer's.  There's still enough of our old loved one to make us question the extent of the impact of the disease and torment ourselves with 'the guilties'.  Virtually all of us felt our loved ones were higher functioning than they really were at Stage 5.   The decline or absence of personal hygiene is a hallmark of this stage, loss of ability to self care.   "Cocktail chatter" is part of the disease, but typically from a later stage.  I will note that many straddle stages the entire journey.   Bowling a 180 involves more motor memory than cognition, so while it is a good thing if he still enjoys bowling, it does not indicate intact cognitive ability.   I am encouraged that you recognize that your Dad is progressed enough in the disease to know this will be his last plane trip.  It's hard to embrace these changes and the downward slop that continues. 

But this post/question is going to be mostly about my mom (77).  Together they moved to a continuing care center 18 months ago, into an independent living apartment.  She's his primary caregiver, but has daytime caregivers several days a week and friends help out taking him to activities.  She works part-time (16hrs/wk?) and has several hobbies that he can no longer join, such as playing bridge and golf (the golf is a ladies' league anyway).  Mostly the caregiving is just someone to hang out with him/watch him.  All of the "care" falls on her.  I live a half hour away and see them about once a week.  I work full time, and am single.  My sister lives 6hours away and is married/has kids. 

As a reader, I am very distressed by the placement of the word "care" in quotation marks by you because this indicates you do not think your mother is doing care and that you seem to feel a part time job, hobbies and a day of golf is sufficient to sustain your mother without issue.   Most of us have to pull teeth to get the spousal caregiver to do self care and maintain outside interests - this is a very healthy sign that Mom is doing this. Don't be so dismissive that the paid caregivers are just 'hanging out'.    Without this time, your mother's time on earth will be much shorter than your father's.

 Your Dad cannot self care, needs hygiene help, and is non verbal.   Do not underestimate the degree of stress this is on the primary caregiver, your mother.  This disease can take a whole family down.  Read many stories on the discussion board.  Her day to day is far from easy.

My mom thinks its about time to move him to the memory care center because he needs more care than she's able to give him. This bothers me because she's still physically capable of caring for him, just not emotionally capable.  And, because he's still "there" enough that he's going to know.  

Your assessment from a clinical standpoint is missing the mark so much here I would suggest you gather more information about dementia.  "Understanding the Dementia Experience" is a classic that many on the boards suggest.  I will observe the following:   At age 77 years, no one should expect their elderly parent to do the heavy lifting of any hands on care, much less dementia care.  Do not be so extremely dismissive of the emotional toll of loosing your spouse (or parent) to this horrible disease.   The physical part is also difficult, and the behaviors are so intense that most PWD will need a geriatric psychiatrist for dementia based behaviors.  At Stage 5, he's not there as much as you think . His care needs must drive the decision making.   And your mom is in the best position to realize this.

My mom has struggled with depression and anxiety throughout her life, but it has rarely been outwardly severe enough to be noticeable to me.  She's generally been medicated, but I don't know how well and exactly how long.  I'm starting to learn more about it.  At this point her GP is rubber-stamping her prescription and she's self-regulating it despite also having a thyroid condition (recovering) that also causes anxiety.  She wants to reduce her medication level, but she refuses to see a psychiatrist to check her levels or a psychologist for an alternative treatment to medication.

If anything, this is another reason why you should support her decision to move Dad to MC.  Don't scapegoat her anxiety as a fault.  I would be happy that she has decided on her own that she is at her healthy limit.  Many of us had parents who refused to place, at great detriment to themselves and the person with dementia.

I'm frustrated because I believe she could do more/better for both of them, but refuses to try other things.  She also chooses the approach of correcting/admonishing him over the standard approach of "living in his world instead of yours".  She understands the harm in this and understands that at some point his personality might change to where he starts resisting this, even physically.  She refuses to adjust.

Although there may be more productive ways to interact, this takes time to learn.  Dementia trained staff have this art down.  Even if you do have the skillset, it is draining and exhausting and filled with sorrow.

I want what's best for each of them.  When one person is sick in a relationship, the other makes sacrafices to compensate.  But while I'm disappointed by the level of physical effort she's willing to take, I also understand that mental illnesses are real and this is taking a real toll on her (not that it doesn't take a toll on people who are fully emotionally healthy).  Ideally, I'd like to get her to improve her mental health care, which will almost certainly help both of them.  But even if it doesn't, at least she will have tried. 

That is a pretty big ask.  Mom should be praised for recognizing her limits, doing care as far as Stage 5 (A HUGE achievement) and supported.  Do not scapegoat her anxiety as a lack of ability.  MANY reach a threshold to seek placement.  It is not a character fault, it is wise clinical decision making. She has done way more than 'tried' - she hung in there all the way to Stage 5.  You haven't done the day to day caretaking, so you have no clue the drain that it is on a person.   You are really asking what is best for you, and not for Mom and Dad here.

Most of all, I don't want the last conscious feeling my dad has to be abandonment. 

Learn the art of the fiblet.  The best answer is the one that brings the most comfort.  My stage 5 LO loved MC and it's scaled back setting.   The abandonment thing is YOUR spin.  Most have placed and while one is to expect a period of adjustment, the placement was done in love, with evaluation of the PWD's and families needs.   "You're here to get stronger, I hear the chef is great! You deserve this."   "Mom has to be at work and the house had a flood, you'll stay here while it's fixed".  "I know Dad.  You're stronger, younger, healthier than all these people, you're amazing!  Be proud."    Etc.

Thoughts/advice?

Support your mother, assist her by telling her when you are visiting, help her reconcile medical bills, schedule your visits with Dad to give her a break, and DO NOT insinuate she has failed, which is the entire tone of your post.  She did great - and it's time to support her now. 

 Recognize your displeasure comes from your pending loss too.  Your parents are elderly, your Dad has dementia.  Nothing is going to change that.  It's a new situation.  If you walk this with both parents in a positive and supportive manner , it will help all heal when they die.  Give Mom the gift of her remaining years and give Dad the gift of dementia specific care.  Be there for them both.  This is not your choice to make.

 

Read Less...

harshedbuzz

Hello and welcome. I suspect the replies you have received thus far are not what you might have hoped for or expected. I will say, however, that this thread is a remarkable example of consensus from people who have BTDT.

I applaud your mom's decisions around prioritizing her self-care to the same degree as your dad's. My own mom was the antithesis of yours; she neglected her own needs and ended up nearly killing herself subscribing to some expectation she fell was imposed by society to "honor her wedding vows". (I believe you phased it thusly- When one person is sick in a relationship, the other makes sacrafices [sic] to compensate.)  I always felt as though Alzheimer's was going to take one parent, but I wasn't going to allow it to take both if I could help it. Not on my watch. Alas, my mom neglected her own care and ended up nearly killing herself and as a result she has not been able to live the fully independent life in Stage 8 that she deserved after caregiving 24/7 for almost 10 years. 

I suspect that perhaps you don't understand the reality of living with a person who is in stage 6- the lack of empathy and intimacy (not sex exclusively- but a shared history and connection) and the mess. It is very likely your mom is keeping some details to herself- a man who can't figure out how to shower is likely a man who can't wipe his butt sufficiently which is a harbinger of urinary and later bowel incontinence. My mom was very discrete about some of dad's symptoms and behaviors. Because I moved them local to me, my visits were typically during the day or evening when dad was at his best in terms of function- I wasn't there for the aggression that came with sundowning or the many middle-of-the night wakings and threats. She was discrete with my uncle, too, who put on his judgy-pants to give me an earful about dad not being "ready" for MC only to be shocked when dad died 7 weeks later from aspiration pneumonia. 

My mom found the role of caregiver difficult; it wasn't something that came naturally to her. She could lose her patience and say the wrong thing because she was struggling emotionally with the loss of her partner in crime. MC turned out to be a better for dad in stage 6; the staff was well-rested and dementia trained. Mom was able to stand-down and go back to being a loving wife. We did not abandon him- we visited regularly. I used to visit dad at least 3-4 times a week and often brough lunch or some sort of snack. I wish we'd done it sooner as I think dad could have benefited more from the activities were dementia-informed and set up to make him feel successful and part of a community. There are benefits to making the move while the PWD has some bandwidth left and can more easily get to know the routines and people. My aunt went to MC in stage 5ish and became a staff favorite. 

The other piece is that you should start working on a Plan B now. Around 1/3 of caregivers predecease their PWD and many more have a health crisis of their own that takes them out of the role of caregiver either temporarily or permanently. It sounds as if your mom made this move with the plan to move dad into MC at some point. If she were to die first, would that still be the plan or would you make other arrangements? 

My mom fought me long and hard at keeping dad at home. I believed the odds about 50/50 on which would survive the other so I set up a Plan B as their only surviving child. I had a SNF which would accept dad on the fly paying out of pocket until I was able to get the paperwork completed to move him into MC. I had toured a dozen MCFs and had a sense of which would be best for dad and what their wait lists and fees would be. 

Good luck going forward- this is difficult stuff.

HB

Rescue mom

Spouses do make sacrifices to care for a partner who’s sick. That’s absolutely true. Many dementia caregivers literally sacrifice their own life. 

Alzheimer’s (like most dementias) is a terminal disease. That card is already played. What makes it more cruel is how often it takes two people, the one with the disease, and the caregiver, who sacrifices their own physical and mental health. Most sicknesses have a plan of treatment, some hope for relief. But dementia has no real treatments, and the behaviors are so variable and constantly changing, any routine or regular “relief method” is elusive. And they do not get better. It only gets worse.

I also advise taking 5-7 days to care for your dad, alone. Many, many of them can be OK for a brief visit every few days. Taking care of them 24/7 is different. It’s not just the “work” of doing things like bathing and cooking for him, there’s also the constant vigilance to make sure he doesn’t hurt himself, wander away, or cause major damage. Nobody knows what it’s like unless they’ve been there for days nonstop.

More subtle, and just as bad (according the many discussions here) for the spouse but maybe not for you, is the loss of a companion, the loss of daily conversation or shared jokes, any discussion of past fun and no chance of planning anything together for the future. 

No help with major decisions. No “sacrifice,” help or concern when the caregiver is sick (loss of empathy usually comes early). No notice of what she does for him now. The shadowing, the delusions that often develop, and also, rage and physical threat, no matter how nice he was before. My DH was really docile—until that one day when he wasn’t. They do get worse.

Many have also said and discovered that no one can do this alone, 24/7, for very long without serious help (more than an hour drop-by from friends) and breaks. Not just physically but mentally. Your mother is 77, she’s not young, and is going through what many here have said they would not wish on their worst enemy. How much more “physical effort” can she do? What’s she’s done to this point is heroic. This is physically and emotionally crushing for many much younger people. If your mom now “admits” to you she needs MC help, I suspect caregiving has devastated her for longer.

A facility is not abandonment. It’s another means of care, and for many it’s an improvement. The spouse simply cannot do it. You can all see him as much as you like. But your mother is doing a Herculean job, now, essentially alone.. She can’t do it forever, and people dropping by can’t do it either.

Please re-read kingboo response (it doesn’t appear at first glance on my screen, I had to scroll down) and others here. Also, read the online piece “Understanding the Dementia Experience” that’s been suggested.  It’s only about 25 pages PDF, and perhaps the best thing I’ve read on the matter. But your mom needs a lot of help and support.

I just saw on another thread something I thought was really good: losing a parent is always sad, but it’s expected—that’s the route of life. But your mom is losing the man she expected to spend her life with, her life partner. Adding to her grief and turmoil is the fact that while the “person” is gone, a body remains that must be cared for by someone. It’s terribly hard for any spouse.

Paris20

There’s a reason why many caregivers die before their person with dementia. I’ve been caring for my husband for seven years of Alzheimer’s. I won’t go into detail about the challenges of caregiving. There are many examples on these forums. Last year I almost died, wound up in the ER, the ICU and a week in the hospital at the age of 74. I had been physically fit, working out at the Y five days a week, keeping my weight normal, and taking care of my health.

Then it happened. My husband worsened, as all AD patients do. Covid hit and we were home 24/7. I started drinking too much wine to escape dealing with all the horrid AD symptoms. I gained weight and neglected my health. My niece died of a drug overdose. My dog was diagnosed with terminal cancer. With all the cooking, cleaning, laundry, home maintenance, finances and bill paying, I was spent. No one saw it, not even me. Now I have help in the house and I can handle the misery a lot better.

This is a roundabout way of saying that if Mom is talking about memory care, she means it because she too is spent. It’s so hard to explain to family and friends what daily life is like. On one hand there are huge changes, all for the worse. On the other hand, it’s like death by a thousand cuts. Even your mother’s engaging in that useless effort of chastising your father might be another indication that she has reached her limit of dealing with this tragedy.

ButterflyWings

Russ - I will add my voice to those who unanimously are urging you to trust, and support your mother in this wise decision she is making for both of them -- which is her job due to his impairment. 

I also really encourage you to spend a week or two, in her shoes. At least you will get to go back to your own space, with only yourself to take care of, when that respite period is over. Your mom, as full time 24/7 caregiver cannot do that. However you will have a slightly better sense of your dad's real status.

One thing we spouse caregivers can tell you, is that if he remembers your injury, surgery, birthday, and even your name...and looks well dressed and groomed when you see him...it means your mom has put in extra time and energy to make that happen. Don't be fooled into thinking that he is "fine" and only needs "companion care" every day and night, because he "seems ok" when you visit briefly. 

Every single thing that a stage 5 (much less 6) PWD is able to do, is scaffolded by his/her caregiver. Everything. Even when we are just observing to ensure nothing untoward happens. And that vigilance comes at a cost. It is described as a 36 hour day. For every hour I spend doing at least some of my own work AND all those things around the house and in our lives that DH can no longer do -- plus engaging, entertaining, redirecting, feeding, dressing, cleaning up after (repeatedly), taking care of his physical, mental, and emotional needs, and preparing for the next step-down which WILL come since dementia is progressive...well it subtracts from the time I would normally be spending to achieve a measure of balance and basic health in my own life. That is not sustainable over time.

At 77, she is nearly 20 years older than I, and has been caring for her PWD LO longer than I have shouldered this same horrible, dead end workload -- trying to survive the loss of a love before my very eyes, helping keep him safe and as comfortable as possible - often against his will as this perverse disease is wont to do - all the while weathering the judgment or indifference of others. It is so wearying and tragic -- she is amazing and hearing a bit of her story encourages me to keep going another day. 

Please, if you care about either or both your parents at all, do support her now. As the others have said, it is especially soul-crushing to do the kind of heavy-lifting your mom is managing.  My motto has been that if folks are not helpful, then they can move on. But she is already losing her spouse -- who would also want to lose their child in essence, due to this cruel disease? On top of dementia caregiving for one's spouse which is a special hell...it would add insult to injury knowing one's child does not approve and/or even opposes her successful efforts thus far, and wise planning for what lies ahead.

I hope you can receive all this feedback in the spirit that it is given. If you want to help your dad - the best thing you can do is to support the caregiver. And do spend a week or two just giving her a break, plus learning first-hand what dad is really like full-time. Good luck to you.

Joydean

Well Russ I would say you have received some really great advice. My question to you would be are you willing to spend just one week by yourself taking care of your dad? Are you willing to man up and try it? You are judging your mom, but can you do what she is doing? After all your so much younger. What sacrifices are you willing to make for your dad?

I’m 75 and caregiver for my DH, he is in late 5 early 6 stages. He also has anosognosia which simply means he does not except anything is wrong with him. This makes life even harder. There are weeks that I don’t have a conversation with a single person. I take care of everything for him, all house hold running is solely on me. When I know our kids might get to come “visit “ I make sure he is bathed, shaved, and I trim his hair, nails, and make sure he has on clean clothes. From any text message I have received from them that’s important, I go over and over with him, sometimes he can retain bits of it. He’s good at showtimes for a short bit of time.

And then they go back to their home and for the rest of that day he complains about everything , he’s sad because they’re gone and he cries and is depressed. 

Spend just one week in your moms place, just you and your dad,  before you judge your mom. 

JJAz

None of us can make the decision for someone else as to when they have done all that they can do.  If you Mom says she's done, don't judge that.  Just accept it.  Then you have 2 choices . . . either take over care yourself or move Dad to memory care.  You have no idea how hard it is until you're in her shoes at her age.

M1

Russ not to sound like a broken record, but as I was getting ready for bed tonight I was aware of how worn out I am by caregiving for a stage 5 partner, and I am struck by, and echo, all those who are saying the same thing in this thread. I have done nothing all day today except put out fires, and MC looks more and more attractive. We're not trying to come down hard on you, but we are all in that Boat with your mom.  I'm exhausted, and I'm 12 years younger than she is.

Good luck, I hope your family finds a solution that works for all of you. I'm sure your mom needs your support.

dayn2nite2

Honestly?  Your feelings and thoughts don't count.

You asked for thoughts and that is mine.  Until you are in the position of doing what your mother is doing, what you think is unimportant.

If you have nothing nice to say to her about this move, then don't say it.  And hope you are never in the same position.  Be glad they planned well enough to afford him to move to memory care.

And for the usual people who complain that I’m mean, etc.  I’ll say that the OP’s mother probably wishes she were dead every day when she wakes up to the same nightmare.  She will probably die before him if she keeps doing this.  So whether she is “ outwardly” showing signs or not is of no difference.

If OP feels so inclined, perhaps he’d like to take his father in and get a taste of what she’s lived with for years. 

Quilting brings calm

Russ-  moving him to memory care is not something being done to him, it’s being done for him. Not only that, but it may be a requirement for your mom to be able to stay in her current location in the care complex.   The staff in the independent living area are not equipped to be taking care of someone in the stage 5-6 of dementia.  And I mean the staff aren’t equipped for every aspect - meals, hygiene, activities, escaping, wandering, sundowning, etc.    they will refuse to help your mom and may force him to be moved or tell them to leave.  The facility has the right to refuse someone who needs more care than they are equipped to give. Independent living centers in my area do not have staff evenings and weekends.  Even if the next building in the complex does. 

The staff in the memory care area are equipped to handle your dads needs.  Even if his specific needs are somewhat  different from another person’s needs. They will be staffed 24/7, with staff awake and alert at 3am if your dad wanders, is upset,  or needs cleaned up etc.  They will have activities that he can do, instead of him being in the apartment while your mom does an activity he can’t do.  Moving him now allows him to meet and get to know the other residents and have some enjoyment before he gets worse. 

Your mom will be able to come and go from the MC to visit him, as will you.  If he is amenable to going on an errand with you or her, that can be done too. Your mom might even be able to have him back in her area for a few hours a day or every few days.  

You mention that your mom is physically capable, but mentally and emotionally unable.  You mention her own mental issues.  Caring for a dementia patient is mentally and emotionally draining for people without mental and emotional issues.  Someone with those issues does not have the reserves to do this care 24/7 or even 24/6  or 18/5.   She may break and die before he does.   I put my parents into assisted living when he was 79 and she was 81.   He was incapable of caring for her emotionally and mentally.  She wandered out of their independent living apartment ( that they had just moved into), went to a strangers apartment and was brought home by the police. My dad was asleep until the police pounded on the door. 

It sounds to me like you aren’t very close to your mom, and have a better relationship with your dad.  Are you sure you are being objective about her physical capabilities?  I would also ask why you think your mom should not be able to enjoy her last few years of life? Why do you think your mom should be up all night, should be trying to physically wrangle your dad into/out of the shower, bed, etc.  

Please go the spouse forum and read some of Lady Texan and Josey Wales posts.  Both of which are a couple decades younger than your mom and both of whom  are totally exhausted.  

mommyandme (m&m)

Russ, 

I wonder if you feel breathless under what might feel like a “dog pile”?

Listen, I can tell that you love your father very much and, of course, your mom.  You want the best for him for as long as possible. As a family member of a dementia patient, early on we somehow think that if we keep things normal our LO will just stay the current course, the disease won’t win, for now.  Unfortunately, that wishful thinking doesn’t stand in dementia’s way.  

Your dad is getting worse daily even if it seems he perks up here and there.  Caregiving a dementia patient is a constant battle inside the primary caregiver’s soul.  Your mom’s soul and well being also need attention and support. 

He is HER husband. She likely knows what’s best for both of them.  I hope you can be proud of her for being sensible and speaking up for herself and your dad. 

My advice is: honor your mom while she makes the tough and heart wrenching decisions as she honors her husband. 

LovingAwareness

I won't pile on, but just want to add that all of the questions you are asking about your Mom, "why can't she do more for him?" "He doesn't need all that much help, he's fine with supervision/cueing/direction, so why is that so hard?" "Isn't the best place always going to be at home with loved ones and how could anyone else care for him as well as the one who knows him best?" "If he's just sitting around all the time, then why can't she multi-task and take care of things?"...

Believe me, these are all questions I asked myself constantly in caring for my Dad for years... as his needs got greater, my ability to have time and mental space to get anything else done - even a load of my own laundry or brushing my own teeth - just diminished more and more. I was staying up all night working to hang onto my job because I literally could not get anything done while he was awake. He needed constant attention, reassurance and reinforcement. Putting on a fresh pair of socks was a project - a shower was an all-day affair.

She is literally carrying his life, and that load has gotten heavier and heavier. She has been through a progression towards death alongside him as his brain has been dying, and this has been spiraling downhill for years. 

My Dad is now relaxed and better off in memory care. He adjusted almost immediately. All of my fears - that he would not be cared for diligently, that he would feel abandoned, that he would want to come home - were unfounded. He is where he needs to be. 

I wish for this blessing for your Mom and Dad too.  

ImMaggieMae

Russ, since you live only half an hour away and "He doesn't need all that much help, he's fine with supervision/cueing/direction,“ perhaps you could go over to your parents home and spend every evening and night to give your mom some much needed  help and be available in case he gets up during the night.  This would also give you precious time to spend with your beloved father. 

Marta

Russ:  what was your purpose in posting?  Were  you looking for validation?

Were you venting?  Or do you need help with something else? 

Iris L.

I am late reading this thread, but please read threads regarding airplane travel and vacationing in general.  PWDs don't do well in new situations even if they are visiting a relative's home.  Can your mom go and you stay with your dad?  

Iris L.

jfkoc

I concur with most of the above and would like to emphasize that more participation on your part may solve a lot of "problems".

What helped me the most was knowing exactly when my daughter was going to be here and for how long. Regularity was the key. Go one evening a week with take out in hand. Spend part of Satutday and Sunday with your father. Take him out.

Be consistant. My being able to count on and look forward to was they key.

Helping with legal and financial thing will certainly help your mother if she will let you. Ask her  what you can do to be helpful.

Spending more time with your parents will also give you a better idea of what is going on. Helping your mother with legal and financial things will lighten her load and let her have some "wife" time.