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Nursing homes are not terrible places
IndCareSon
Posted: Monday, July 8, 2019 11:59 PM
Joined: 1/22/2018
Posts: 30


Nursing homes tend to have bad reputations. We tend to think of them as bad, awful, horrible, terrible places. They have a reputation as being houses of horrors.  A common statement is “I sure hope I don’t ever have to end up in a nursing home. They don’t treat people well there.“

Nursing homes are not inherently terrible places.  It’s true that sometimes there are exposes of bad things happening at nursing homes. However, nursing homes are heavily regulated.  There are rules about how patients can or cannot be treated.

 I think one of the reasons nursing homes have such a bad reputation is that we tend to associate them with memory loss and growing old. It’s the condition of aging that appalls us, not the home itself. A good nursing home can actually be best for one’s loved one. 

If your loved one is in a nursing home, you can keep the home honest by visiting your loved one regularly. This shows the staff that your loved one is cared about and that someone is keeping an eye on them.  

  I realized my mother was better off in a nursing home than my continuing to care for her during the increasingly severe stages of her condition, as I did for over a year.  She can be kept an eye on 24 hours a day, while I have to sleep for at least eight hours every day. I cannot keep an eye on my mother all the time, and I had no one to help me. 

My mother needs the company of more than just one person. She tends to be lonely even when I am present.  At this point in her life, the company of other people her age is a comfort. The hustle and bustle of other people walking around the halls helps to occupy her attention. 

I knew she was in the right place when I came to visit and she told me that I didn’t  have to visit her all the time.  I have to be honest and admit to myself that I am just another person to her now. 


markus8174
Posted: Tuesday, July 9, 2019 5:07 AM
Joined: 1/25/2018
Posts: 531


In my experience I have found your statement to be in error, however I pray you are right. I will be needing a place for my DW in that her care is getting beyond me at home. It's just that , so far, I am providing care at home that is so far superior to what she received in two facilities she was in briefly, I cannot bring myself to return to them.
SelEtPoivre
Posted: Tuesday, July 9, 2019 8:18 AM
Joined: 3/8/2018
Posts: 788


There are very good places, average ones, mediocre ones and “I wouldn’t send my worst enemy here” places.

When I first considered placement for my mom, I read online what to look for, and went to two NHs in my town. One was OK. One was awful. Sadly, their short term physical rehab center is a palace, but their NH is a shame.

I ended up selecting a NH that’s 40 minutes away from me,  its very good and my mom is getting good care in their MC wing.

I think resistance and repulsion (?) about nursing homes originates in a fear of leaving ones own home, and being on a pathway to end of life


IndCareSon
Posted: Tuesday, July 9, 2019 10:35 AM
Joined: 1/22/2018
Posts: 30


  When I placed my mom, she was starting to forget that she was at her home anyway. She was even starting to forget that I was her son.  

When I brought her there, it was in the evening after taking her out to dinner (as I did every night) because she was starting to think of bedtime at that time anyway. When we arrived, she didn’t even make any comment about being in some kind of strange place.  She was ready to go to bed almost immediately.

So the transition was a lot more painless than I feared.  I’m sure different people adjust to the change differently, and it also depends on how advanced their Alzheimer’s is when you bring them in.

After I brought mom there, she asked about me frequently and I came to visit frequently, but I usually came just before dinner time, and she was ready to go to dinner after I visited with her.  As time goes on, she has become almost indifferent to my visits, which is saddening on one level but is a necessary part of the process on another. 

By the way, nursing homes are heavily regulated in what drugs they can give the patients. The practice of heavily drugging the residents with sedatives like Thorazine, as used to be the case many, many years ago, is against the law today. 

 Yes, the lounge of the memory care area is much smaller than the main lounge of the nursing home, but the purpose of the unit is to bring the people with Alzheimer’s together with others of their age, making them feel that they are not all alone and giving them company. I had an expensive leather La-Z-Boy recliner brought to my mom’s room for her to sit in and rock but she rarely uses it, much preferring to either lie in bed or sit in the lounge area. 

 The dining room of the memory care unit has a view of a small fenced in courtyard with a gazebo and some shade trees. The staff opened up the door on a beautiful sunny day and let the residents go outside. The reaction was fairly typical. They went outside, walked around a bit, quickly got bored, and came inside again. My mother was  interested in being outside only as long as I was sitting with her. 

The main concern of that stage in the disease is simply having company – any kind of company. We tend to project our own biases and preferences on to people with severe Alzheimer’s. Their main interests now are not necessarily what their interests used to be. 

Their main desire is simply to be with other people their own age and even their own gender. The women tend to sit with the women, and the smaller number of men tend to associate with the other men. They don’t remember their own families anymore, but they do like being around other people.  

That, I suspect is one of the most basic aspects of human nature and always will be. 


Rescue mom
Posted: Tuesday, July 9, 2019 3:46 PM
Joined: 10/12/2018
Posts: 906


You are so right. I’ve seen many wonderful facilities...but the term “nursing home” and what most people think, is so different given the variety and different levels of facilities. 

I’m sure it’s like everything else, good and bad places. Our job for our LOs is to find a good place. No place is perfect; my own house is far from perfect. 

And as said, it’s important to remember PWDs do not see things like we do. We have to be careful not to assume they are completely like they used to be. Everybody changes with time, they change with a disease.

There are many assisted living and senior living places I would LOVE to live in. Hopefully I will, in the next few years. But today’s real nursing homes are not all that different from hospitals, and hardly anyone wants to be in a hospital because that means you are sick....The memory care places, though, are like a real home, but with appropriate care as needed.

It’s all the gradations in between. I hope to never need a nursing facility, but the MC facilities and ALFs I know are great places. 


Sayra
Posted: Monday, July 15, 2019 7:39 AM
Joined: 8/10/2016
Posts: 1567


IndCareSon,  My aunt 89yo, lived by self, no other relative in her state, falling frequently, stressed out with bills etc.   After last fall, she was told it is not safe for you to live by self.  She chose to go to a nursing home in her town instead of moving to another state.  She loves it and it is not a fancy place nor does it have the best of reputations.  She doesn’t have to worry about stuff anymore.  She gets more visitors there because she doesn’t need things done now, they can just visit.  Is it perfect, no, but for her it is way better than the alternative.  She has given me a different outlook for if I end up in one.  For that I thank her.
NoSiblings
Posted: Friday, July 19, 2019 3:07 PM
Joined: 9/3/2016
Posts: 214


As the original poster said, no one ever says "I want to go to a nursing home." But sometimes they are necessary, and they are not all created equal so shop around before choosing one. In 2012 when I moved my mom and dad into my home I truly believed I could do it all, and would never need to put them in a nursing home. I desperately wanted to keep that from happening. Well, guess what? It turns out I'm not Super Woman and Alzheimer's is a relentless foe. For my dad I could manage at home. He did not have dementia but did have congestive heart failure, COPD, and kidney disease. He also broke his hip. But with my mom, the Alzheimer's just kept marching forward rapidly. She became very violent to the point she sent my dad to the ER on two different occasions. My alarm was literally set for every 3 hrs 24 hrs a day because there was something constantly that needed to be done for one of them. Finally, I had to admit defeat after 6 years. They simply needed more care than I could give, and my own doctor had already told me that something had to give for the sake of my own health. I'm an only child, so if I went down we would all go down. So as much as I hated it, I had to find a nursing home. My dad refused to allow my mom to go without him, so both went into the nursing home in March of 2018. In November 2018 my dad passed. My mom is now well into Stage 7 AD, and on hospice. Is the nursing home perfect? Absolutely not. But, I they have a whole staff of people 24/7, so my mom is receiving better care than I would have been able to give as she is 100% helpless now, can't walk, can't sit, etc. Do I like seeing her there every day? I hate it, but I know it is for the best. What I do especially like, however, is that I can be a daughter again as opposed to a worn-out caregiver. I can play music for my mom, read to her, sit beside her and hold her hand. I don't have to be thinking is it time I should change her, I need to feed her, etc. I can just be her daughter and love her.
IndCareSon
Posted: Tuesday, July 23, 2019 2:05 PM
Joined: 1/22/2018
Posts: 30


 NoSiblings, it sounds like you went well above the call of duty, doing more for your parents than what 99% of children feel obligated to do.  It seems like the people who care the most feel the most obligated to beat themselves up over their decisions.

Here are some of the factors that led to my decision. Maybe other people here can see parallels in their own situation:

  • My mother had to deal with her own mother’s slide into dementia, and she did so without excessive hand wringing or remorse. 
  • My mother said on a couple of occasions that she should go into a place if she got bad enough.
  • My mom wrote a living will, prepaid her funeral arrangements, and even held a long-term care insurance policy because she did not feel that old people should be a burden on their children. 
  • My mother fortunately avoided the depression associated with Alzheimer’s for many years, in fact, frequently talking about how happy she was and how she wanted me to be happy as well, but in the last year, she took a definite turn for the worse. She became exactly the opposite, crying frequently (pseudobulbar effect) suffering from extreme boredom because she could no longer concentrate on her reading (which had been her primary way of passing the time), etc. 
  • Her personality changed in other ways as well, going from being an introvert and a homebody to one who was most pacified when we went out, such as going to the mall and just sitting on the bench and watching the people go by (which I knew we could not do all the time) or sitting along the walking trail in camping chairs, which we could no longer do when the weather got cold, etc. So it was clear that the nursing home environment where she was around other people all the time was the best for her. 

 


feudman
Posted: Thursday, July 25, 2019 9:23 AM
Joined: 6/5/2014
Posts: 1285


It has been a while, but I recall about a half dozen threads (usually by new members) asserting  that "ALL nursing homes are horrible places." Obviously, these threads were long on opinion, and usually devoid of evidence beyond the posters' limited personal experience.

Imagining the crippling guilt such threads could inflict on the many members who, at any given time, could be wrestling with the difficult "placement" decision, I always made it a point to respond to these threads. After all, a single positive experience would refute such bold claims, but I would imagine the damage had already been done.

The purpose of this forum is to support other members. Even if the posters believed these posts to be true, how could they be in any way helpful? Not all of us can keep their LO's home. Sure, there are some really bad ones (see the "Special Focus" list Michael linked!) but we can use that fact as a reason to look closely and choose carefully. It's hard enough, as we all know, to get through this journey guilt-free... such posts are truly an evil.


Acoxe3
Posted: Saturday, August 24, 2019 12:14 AM
Joined: 2/9/2019
Posts: 114


Thanks for reading my two cents worth:   it seems that the quality of nursing homes varies from state to state.  I am in Washington State where the term “nursing home” is very rarely used(at least on the western side of the state) but the term “assisted living” is used more often.   But our state is one of the “worst” they say for healthcare—go figure! Great care when you can get it, but lots of obstacles and red tape—yikes!   I just want to encourage all of us, take to heart the words of Angela Davis: “Accept what you cannot change; change what you cannot accept.”  When you find yourself in the place when your precious LO has to be placed in a nursing home/assisted living facility, do your homework and research all that you can about the facilities.  If you find that your state is sorely lacking in a quality facility, make your voice heard—even small things can have a big impact.  Be like the little Who in “Horton Hears A Who” who calls out in his tiny little voice, “We are here!”  Together we are strong.  Thoughts go out to you, fellow champions.
markus8174
Posted: Thursday, September 5, 2019 10:21 PM
Joined: 1/25/2018
Posts: 531


We are at the point of placement for my DW. I am just overwhelmed when I try to narrow down the choices. I don't really care how far away she is placed as long as she can get decent, respectful care. The problem being she is still lucid many hours of each day. Not completely normal certainly. Frequently delusional, but alert enough to have a conversation about what she would prefer for dinner, what her favorite kitty is doing, how the grandkids have grown.... How do you actually go about placing your loved one? "Hey, Lets go for a drive !" seems cruel. Do you pull up to the door with an overnight bag, get them into the lobby, and then run out and drive off before they realize where they are? This is impossible, and I don't know how to resolve it. My DW is completely incontinent of urine, and refuses to wear protective garments. Every seat in the house is covered with waterproof pads and throws. I'm doing 8-10 loads of laundry a day to keep up with her pee, and my house still smells like an outhouse in the summer. She isn't safe to be left alone even for an hour- I'm afraid she'll turn on the stove and put her kitty in the oven to help her get warm !  I get "What do you want me to make for supper"- literally every 5 minutes from noon on. Finally I relent and start cooking our evening meal at 2:30 in the afternoon so she doesn't put some random item from the fridge in the oven and turn it on. All the time I'm cooking I get "What can I do to help?" even though turning the one burner being used on the stove from medium to low is a major brain buster for her. A hundred times a day she asks "What time are we leaving here to go home?" There is no chance of reorienting her to place, and she just keeps getting more and more agitated that I won't "take her home!!!" I'm afraid she may become violent any day now. She's still alert enough to say "If you aren't going home, fine, I'm leaving here.  I'll call a cab to take me to the airport, so I can go home and see my girls !!!" I also get "I love you a lot, and am so thankful to have a husband like you to help me!" a dozen times a day. It's more than time for placement,  but I still don't know how to physically move her into a facility, even if I could chose one and they would accept her as a resident. No matter how I place her it will brake both our hearts. God help me I understand the murder-suicides you hear about on the news from time to time. I hear those stories and instead of being appalled, I'm jealous that some couple got to escape this hell we are living through every minute of every day. I feel guilty that I don't love my spouse enough to load a gun, or give a dozen too many Seroquel with her evening meds. SORRY FOR THE WHINING. It's been a long summer.
Jo C.
Posted: Friday, September 6, 2019 9:39 AM
Joined: 12/9/2011
Posts: 9962


Hello Markus, I have been thinking of you as have some of the other Members on the Spousal Forum, it is good to hear your voice.

First thing, Markus, the Alzheimer's Assn. has a 24 hour Helpline that can be reached at (800) 272-3900.  Please consider giving them a call, you may find it tremendously helpful.  If you call, please ask to speak to a Care Consultant on an urgent basis.  There are no fees for this service and Consulants are highly educated Social Workers who specialize in dementia and family dynamics. They are good listeners, highly supportive, have much information and can also often help us with our problem solving.  I think it would be a good option to discuss your situation and be helpful for you.

Taking lives is NOT the answer nor would most of us want our family to live with the fallout from such an act.  If you find it being needed, the number to the Suicide Prevention Hotline is: 1-800-273-8255

I am truly sorry for what is happening and can understand your heartbreak and worry.  For most all of us, there is a deep sadness when transition to a care facility becomes necessary.  What is true is that we are not doing something TO our Loved One, we are doing something FOR them.

As for how, there are options:

One can have a bed ready to accept in the chosen facility and if our LO is in the hospital either as an inpatient or in the ER, we can have our LO transferred by ambulance directly from the hospital to the care facility - and yes; sometimes we must use a fib to have a successful transfer.  It can be said they are going for "rehab"  or, "for more treatment" by doctor's order and to regain strength and "get better." 

While this may be difficult for you, and while there will be an adaptation period for yourself as well as your wife, you will probably, as most of us do, come to the realization that it was the best decision for what exists actually for the both of you.

You can be there with your wife as the loving husband and not the burned out caregiver; you can attend activities and special programs with her; walk her around the grounds or by wheelchair; bring her treats, help her to socialize to her abilities, and you can go to bed and get a good night's sleep at home and begin to recoup your energy and your health.   You can visit as much as you wish and be with her as much as you wish; it is not shutting her out at all.

Markus; you will NOT have abandoned your beloved wife, you are continuing on as her carer; just in a different way.

One admission with my LO was from hospital by ambulance to the care facility.  The second time this had to be done with a LO I had to drive my LO there.  My heart was pounding, and I sure was second guessing my decision . . .  . a fib was used:  "doctor had recommended rehab" and that was where we were going.  Yes; it was heart wrenching and very difficult, but a necessity.  After a few weeks adaptation, I came to understand and realize that this was a good choice.  It takes time and we have to let tincture of time resolve the feelings and settle ourselves and our LOs.

You can do this because you are a loving and caring person and have gone as far as can be and more with the situation at home which is no longer healthy in various ways for either one of you.

Want to mention, why not take the knobs off the stove so your wife cannot operate the burners or oven, and unplug the microwave so she cannot use it if one is within reaching distance for her.  If the stove is electric, you can unplug it.  You will feel better that she is safer in that regard.

Also, wanting to, "go home," here is a good link to a wonderful, detailed writing by a dementia expert, Jennifer Ghent-Fuller; "Understanding the Dementia Experience," it may be helpful in explaining some of the dynamics:

http://www.smashwords.com/books/view/210580

Do think about contacting the Helpline, it may be good to talk to someone professional who can assist. 

Please continue to let us know how you are and how things are going on any Forum; we are thinking of you, Markus, and we really do care.

J.


Jo C.
Posted: Friday, September 6, 2019 1:43 PM
Joined: 12/9/2011
Posts: 9962


Markus, I just re-read your Post and recalled your asking how one makes such a move; with a "packed bag, " or what.

I can share what I did when it came time for my LO to make that transition into care.

Before my LO arrived at the facility:

I had all of my LOs clothing marked and placed into the closet at the NH; I had all toiletries and grooming supplies purchased and put inside the nightstand and other drawers. (Don't forget to mark shoes too.)

I had a favorite bedspread (and later bought a pretty new one) placed on the bed.  I had a favorite afhgan folded at the foot of the bed.

Picures were hung on the wall..   I also had a favorite lift chair brought in as there was room.

Our LOs get upset with too much activity going on around them, especially in a new setting; so I had everything put away in its place and our half of the room put together as homey as possible prior to my LOs arrival.

I also let the NH supervisor know my LOs favorite food and they had it for her about an hour or so after my LO was settled in. (Fruit plate with cottage cheese.)  I had some of my LOs favorite treats at the bedside.

For the first week, one particular orientation aide was assigned to get my LO to meals, and to take my LO to activities.

I asked for an early multidisciplinary meeting to set a plan of care into place; this included the DON, the unit supervising RN, P.T., Dietician, Social Worker, Activity Director and a unit aide.  Problems and needs were discussed and a plan of care put into place with crucial matters put into the daily reports for each change of shift report by staff.

This multidisciplinary meeting could not happen within a few days as the staff had to get acquainted with my LO and vice versa.  It happened within a couple of weeks. 

I also had typed a detailed list of my LOs likes, dislikes, what was soothing, what caused upset, other physical issues, etc.  I made it easy to read and discussed all of this with the Unit Supervisor in a scheduled meeting.

I also asked for my LO to be seated at a table at mealtimes with other residents who functioned at the same level so my LO would not be upset by far more behaviorally challenged individuals which would have affected eating.

THEN:  One waits to adapt and addresses things as need be.  Pick battles carefully and not nitpick every tiny thing.   It took some weeks for both myself and my LO to adapt, that is par for the course.

When I visited, I found it better to visit in a public area such as the activity room as my LO behaved better in front of others; when privately in the room, there was some acting out.

When I would leave, I did not say I was going; I said I had to use the restroom, then clued in an aide and asked the aide to distract my LO with other activity, etc.  This was successful in not having acting out when I left.

That was the start.  Eventually, my LO came to love two aides; and sometimes balked at others.  The DON was wonderful assigning the specifically loved aides each day which was so appreciated and really smoothed matters.

Also, it is very nice to show appreciation for staff by bringing in treats for them at intervals and to compliment those doing great care or extraordinary assistance; sometimes writing a letter regarding the same to the DON for the staff's file and giving a copy to the staff member. Everyone is fast to complain, and not much about thanking and it is always greatly appreciated.

If you have any other questions, please do ask; if I can be helpful from my own experience, I would be happy to share.

J.


markus8174
Posted: Friday, September 6, 2019 10:40 PM
Joined: 1/25/2018
Posts: 531


Jo C- I'm still stuck with the problem of how to do the actual move. It feels too much like when I had to take my beloved kitty to the vet for euthanasia when his suffering was too much to continue to allow to go on. "Hi my love, love ya. Are you in the mood for ice cream? lets go for a drive.." !!!" I don't know how I'll ever be able to take her to a facility when I know she will fight it every step of the way. I had hoped to wait until she is far gone from her AD that she can't realize where she is or where she's going. I don't know if I have it in me to continue to manage her at home 'till then. She is already bordering in becoming violent because she feels I'm deliberately keeping her from going "home" to see her kids. How is she going to handle it when that is a true assessment, not some warped delusion? How am I going to handle her even just driving to the long term care? Every time I try to work out a plan, I end up defeated and just pray that tomorrow will be better- it never is. Sorry to hijack the thread. I'm just struggling with this decision and don't know where to turn.
ruthmendez
Posted: Friday, September 6, 2019 11:05 PM
Joined: 9/8/2017
Posts: 2078


Markus, you didn't hijack this thread.  This is about exactly what is being talked about here.  Placing in homes.  

You just gotta do it, like with kitty.  It's just going over that hill that is hard, but we do it, and it's done.  That part, I mean.  The move. 

I understand the problem is that you feel you are doing this alone.  But I see you believe in something, so my guess, is that you're not doing it alone.  

I guess one thing to tell you, is that. there are changes, and we just have to float sometimes.  The next will come, then the next, then the next.   At some point, the current problem, becomes the lesser problem, then the next thing, then the next thing, and then what we think now, will eventually be.  What you feel in your heart.  I think, somehow, it will be the answer.

Stay strong.  You can do this. You will survive.  You're wife will eventually be okay.  Just as JoC said, you  will still be there for her.  

Good thing JoC is here to help you and others who have gone through this.  You are not the first, and you can be here to help the next folks going through this with what you specifically will experience.  
The "hi love, let's go for an ice cream, for a drive..." yeah.  Like that.  What other suggestions are there?  That ain't so bad.  The facility you would like to take her to, can help you.  It's just getting over that awful feeling you're going through to make the move, but that will eventually subside. I  believe that.  

Just step over that hill, Markus.  Then after, just take a walk somewhere, cry all you want, and we'll meet you here. 


Jo C.
Posted: Saturday, September 7, 2019 8:55 AM
Joined: 12/9/2011
Posts: 9962


Lovely response from Ruth.

Markus, I do understand your feelings as I had some of them myself when facing such a, significant move into the need for placement which affected me deeply.  BUT; sometimes our perspective gets so skewed in emotion and imagining what can go wrong, (but probably never will), that we become the barrier itself.  I have lived that.

I don't know if it has occurred to you Markus, but after getting settled in, your wife may do better at the care facility than the dreadful situation that has evolved at home, and may even begin to thrive.  Routine, structure, 24 hour aides, better access to physcians better ability to care for the basics including hygiene, adjustment of necessary meds, activity and socialization to whatever level is best for her; in time, this may make a huge difference to the actual quality of her life.  You will still be part of this to the level you wish.

From what you have written, I do not think you have screened facilities yet.  Just beause you screen them Markus, does not mean you are going to take immediate action or even any action; it means you now have the knowledge you need when you decide it is time or when it becomes an absolute necessity. 

You need to start somewhere; so . . .

1.  Have you found a facility or screened facilities that you feel may be good candidates for care?  This is the starting point for all else.  Sometimes facilities have a waiting list, so it is good to find this out so you can make plans as early as possible when you feel you are ready.

Once you have found a facility and once you have decided to take the steps for admission and arrangements are completed for a bed, then you either take it by the horns and drive your much compromised wife to care yourself; she can be given a medication to calm her while you do this, OR . . .

Once you have found a facility and have completed arrangements, you can have your wife taken by ambulance to the ER . . . . reason to the ER will be, "an abrupt or new change in condition," let her be seen and assessed for UTI, etc., AND then, at discharge from the ER, have your wife transferred by ambulance to the facility you have chosen.  Be sure to let the ER doc and RNs know about the transfer to the NH up front out of your wife's hearing..

If it makes you more comfortable and if your wife can understand, you can always say that the doctor has ordered care because she is ill, and then transfer.  Markus; if she yells, hollers and acts out, that is not a barrier.  Also, the ER physician can prescribe something to calm your wife while the transfer is made. 

If needs must, because of your feelings, you can always absent yourself from the area while she is readied for transfer and meet her at the NH facility instead.

In my other Post, I mentioned having everything ready in the care facility room prior to arrival; but you need not do this up front if cannot easily be done.  Just get her to where she needs to be for necessary care and then bring her items in.  If you have a small case in the trunk of your car, that too is an option.

2. Why not put your toe in the water and actually screen facilites.  You can also begin writing that information document I spoke of in the other Post; your wife's likes/dislikes; what comforts/what upsets her; all those things about her that are her issues, etc.  This will get you doing something concrete moving towards the ultimate goal.

There is never an easy way, Markus.  Your intense anxiety about this is real and understood; it is also the hurdle to be overcome.  I know from experience that is not easy and feels threatening.  I am truly sorry for the level of this that you are feeling.  It takes bit of time to adapt to the, "new normal," and when doing so, you will find that you are breathing much more easily. 

None of us do this in a vacuum; most of us have deep feelings for our LOs; but at some point, one has to dredge up the strength on behalf of our LO and move forward for the betterment of all concerned.

It may also be helpful for you to see your own doctor.  Your stress levels must be off the chart; that is concerning.  You may benefit from a prescription to help calm and center yourself as the stress and anxiety must be dreadful by this point.  There is help to be had. Don't forget about the 24 Hour Helpline at the number in my prior Post; it may be good to speak to someone in real time and vent and get care and helpful input.

We are here, Markus; and as Ruth said, "We will meet you here."

J.


Jo C.
Posted: Sunday, September 8, 2019 11:40 AM
Joined: 12/9/2011
Posts: 9962


Hello Markus, just letting you know that someone is thinking of you.   So hope that you were able to get a bit of restful sleep last night.

I have full confidence in your strength and believe that you can handle this when ready.  You care deeply; that is part of who you are.

What I found with myself is that as I got much nearer completing the threatening situation, the more I get wound up and believe me, I can set imagining potential disasters to new heights; but those things never happened.

A quote I like from Milne; "Remember . . . .. you are braver than you think you are, and stronger than you believe . .  ."

You are going to do fine and I believe Markus, within time, there will be a new peace within yourself and for your wife. 

Let us know how you are feeling and how you are doing; we truly do care.  And remember, that 24 hour Helpline is but a phone call away anytime night or day.

Wishing you the very best,

J.


jfkoc
Posted: Sunday, September 8, 2019 12:05 PM
Joined: 12/4/2011
Posts: 17184


Placement is something I did not face but I did have Plan B in place. Did I make the right choice by having my husband at home? I think  so but I weighed the decision constantly.

The fact remains that my husband might have done better under the care of professionals. It happens. 

I will never know.

You have a really tough decision to make and it is riddled with unknowns. It is impossible to know what is best (better) for your wife and for you.

I do know this...it is a good thing that we can hash this kind of situation out here with people we will never meet that care an awful lot about us.

 

 


markus8174
Posted: Sunday, September 8, 2019 10:20 PM
Joined: 1/25/2018
Posts: 531


Jo C- part of my fear is my DW will do better   under the care of a facility-health wise. Less or no "junk food", healthier diet, regular hygiene... What if she returns to early stage 5 while there- do I try to get her to forgive me for "dumping her in that place" (her description of skilled rehab after her surgery last winter), and bring her home in hopes of having a few good months together- maybe one more Christmas, Anniversary, New Years.. Or do I leave her to deteriorate in some nursing home, even though much of the time she could be managed as well (or better) at home. I just keep seeing the anguish, hate, and hurt in her eyes when she realized she was in a "Nursing Home" for rehab last winter. She gets better, she will feel all that again. Do I stop her Alzheimer's meds to allow her to sink into late stage 6? How about "Hospice Care" : stop her antihypertensives, Alzheimer's meds, diabetic meds, ?antidepressants?, She'll be dead in 60 days, outside. That seems too much like putting my kitty down. Her care is definitely getting beyond me, but for her endless somatic complaints I offer PRNs in 2-3 minutes. When she's anxious, I hold her hand for hours- reminiscing about the happier times in our past, when she is incontinent, I change her bed, the pads on the couch, the pad on the porch chair- over and over and over, because she hates incontinence garments. All that is driving me over the edge, but I don't see any of that happening in a long term facility. Here she has a24hr 1on 1 health care provider, advocate, and friend. Most nursing homes boast at a resident having an RN for up to 45minutes a day, an LPN(LVN) for maybe an hour, and a nursing assistant for an hour and a half.- 3hours and 15minutes of care at the very best of facilities. What about the other 20 hours, 45minutes I am providing care. She is on her own, and in competition with 40-50-even 70 other patients for the licensed staffs attention. Maybe half that many for a unlicensed caregiver who can do almost none of the things I am doing for my wife at home. Like I said, I almost fear she will do better, well enough to know how poorly she is being cared for and enough to miss being at home with me. Not a good outcome. I know I'm not unique in this dilemma, but I'm an RN, and I have had recent experience of seeing her in a long term facility. Her bad response isn't some fantasy, but an established pattern of behavior. That is what is making this so tough. I'm afraid once I drop her there, my best course is to never see her again this side of the grave. It would just cause the wound to scar more slowly for her and myself. That's a goodbye I'm just not ready for yet.
Sweetwater
Posted: Monday, September 9, 2019 7:17 AM
Joined: 10/6/2016
Posts: 172


Markus, stress can be a killer. If something happens to you, what happens to her? Answer honestly to yourself. Sweetwater.
Jo C.
Posted: Monday, September 9, 2019 8:43 AM
Joined: 12/9/2011
Posts: 9962


Guess I should say where I am coming from.  Markus, I am not a physician; I am a person who was primary caregiver for two LOs with dementia and care coordinator for two other LOs with dementia. One LO for whom I was primary carer, was over the moon with FTD and beyond dreadful behaviors and tremendously care resistant; so I have been in a similar situation.  I am also an RN who spent years as Administrator of Patient Care Management after years working as Supervising RN and primary care RN on medical and surgical care units and have had lots of hands on.  I take my understanding from what you have written and can only try to be helpful.  I strongly  recommend getting good professional input from healthcare providers who can assess, guide and support both you and your dear wife.

I hear you and understand where you are coming from; you need not do anything you do not want to do.  Perhaps an advocate for you; a counselor to help sort through this and bring you a bit of peace may be very helpful at this difficult point.  Getting a checkup by your physician would also be a good idea secondary to the severe and ongoing stress you have been living with. We too often need care. 

Just crossed my mind; has your wife seen her physician for followup and assessment since her return home from the hospital some months ago?  She may well have had a recurrence of a UTI, have other lab abnormalities, and perhaps needs meds adjusted for where she is now; not where she was some time ago. Just a thought.

I am concerned on your behalf.  If things continue as they are with your severe level of stress and with your wife declining in the home setting; if one or the other of you falls apart, then plans may be out of your hands.  Your health is important too.

Markus, just looking at and assessing facilities does not mean you need to do anything; BUT it is good to have that knowledge of what is acceptable if something unforeseen or abruptly happens.   It will be comforting to have knowledge.

You wife was in a Rehab, not in a NH or Memory Care custodial care setting; the goals, focus and staff attention is very different between those settings.  

1.   It is not mandatory to continue with NH placement once placed.  At any time, you can reverse course.  If anything else, you could certainly use some respite care to allow you to recoup as much as can be.

2.   If your wife goes into care and regains some of her cognition and function and once again able to be cared for at home and if it is your decision to take her back home; if she questions where she has been; "she had been ill and needed care."   However; she may actually continue on being comfortable in the care setting if she feels more comfort and peaceful where she is.  What happened way back in time does not mean the same thing will happen again.

3.  Just a few months or so ago, your wife was in a dreadful physical state. She was in a severe downturn of behaviors; she had not had hygiene in many months (neither bathing nor hair washed); she had a UTI, and other body infections; being obese she is at higher risk for this.  She required acute hospital admission where her issues were addressed.  She improved.  Then she returned home. 

4.  Once again, refusal of hygiene, poor nutrition, fully incontinent rhrough the pads onto the furniture making your house smell, in your words; "like an outhouse in summer," because she refuses incontinence wear.  Her behaviors have once again worsened; her physical self has worsened and you are exhausted.  She did so much better in care which indicates her level of care and quality of care needs do seem to need a care setting.

You will as said, not be abandoning her.  You will still be her carer; just in a different way. Markus, it is NOT all or nothing; you will still have control over decisions and will still be her advocate,  and loving husband, etc.

5.  Up to you.  It may be that if you could find assistance for your feelings, this would perhaps take a different path.  You had in the past mentioned that finances were also an issue.  It may also be, that if you qualify for assistance in the home through a program that provides aide care, that being home may be more manageable if that is what your care decison is.

From your writing:  You need not ask to be "forgiven," because you did NOT dump her; you got her to adequate care at the level she desperately needs; you got her to care out of love for her.  NOTE:  Markus, your wife has dementia.   Her processing, her reasoning, her judgment is severely compromised.   One cannot expect her to make rational decisions or even rational thought processes as she is not able to.

6.  Is there anyone who can be at your side to help with support?  Is it possible perhaps for you to be able to get out and see a counselor who can help you sort through all of this?

7.  My guess is, that there is a history of your DW being able to manipulate you and through sheer exhaustion it is easier to give in to her; that may well modify with a change in plan of care and/ or setting.  No need to change meds except for what she needs for any new or changing conditions. 

8.  Christmas.  Every facility has Christmas parties and family invited; family also can arrange for private room for celebrating alone; your anniversary, etc. can still be celebrated and probably far better than what is happening now.  I only mention that as you had raised the that as part of your thinking.

There is not too much else that has not been spoken of; it really may be that support for yourself will help you tremendously and remove much of the burden you have been carrying alone for so long.

Please continue letting us know how you are and how things are going; I so hope for a good outcome either with care assistance in the home or with a professional care setting and support for you too.

J.


jfkoc
Posted: Monday, September 9, 2019 9:55 AM
Joined: 12/4/2011
Posts: 17184


Marcus, I do not think you are ready for your wife to leave. Please, get some help at the house!
Bob Sacamano
Posted: Monday, September 9, 2019 10:20 AM
Joined: 1/31/2012
Posts: 471


jfkoc wrote:
Marcus, I do not think you are ready for your wife to leave. Please, get some help at the house!
 
Agreed, Marcus this has probably been mentioned before, but if your state has it, have you looked into a Medicaid waiver which may be able to provide the assistance that you need to help keep your wife at home with you? 
 
Also, in my state, Massachusetts, and I believe at least 30 other states, there is a program called PACE whose mission is to provide the help necessary to keep frail LOs in the home.

Jo C.
Posted: Monday, September 9, 2019 11:07 AM
Joined: 12/9/2011
Posts: 9962


Markus, I agree with Judith and Bob.  Though your multiple Posts on the Spousal Forum and here involve facility placement and questions regarding that, and folks do their best to answer in that mode, I do not think you are ready for facility placement either.

Bob's input is especially valuable.  You can look up PACE and what it is on Google.  You can also contact your area's Agency on Aging, they should be able to provide you with information regarding programs that will help provide some hours of aide care in the home when one financially qualifies which you probably would.

In addition as part of the care team, there is also the option of "Palliative Care," this is NOT Hospice.  In this, they will provide you with your own RN, with a bath aide, and guidance by physicians, work with your own physicians and provide supportive services and address evolving care needs of both your wife and also support of you.  Palliative is for anyone with a chronic disease, including Alzheimer's Disease likely to eventually become terminal.  A person can continue to obtain acute care, hospitalization if needed, and life saving care; Palliative does NOT have the same criteria for Hospice.  Palliative follows at home and in facilities.

I think if you had some hours of aide service and Palliative Care in the home, between these two, this would really give you some hands-on assistance and lift some of the exhaustion and load making things more workable.

https://getpalliativecare.org/wp-

 content/uploads/2019/01/GPC_WhatYouShouldKnowHandout_2019.pdf

It is a different way of looking at things and perhaps will be more acceptable. 

J.


Jo C.
Posted: Friday, September 13, 2019 2:00 PM
Joined: 12/9/2011
Posts: 9962


Hello Markus; wondering how you are doing and how things are going.

J.