Caregiving resources for every stage of the disease.
RSS Feed Print
At the last minute…
MrToad
Posted: Thursday, January 11, 2018 9:00 PM
Joined: 7/13/2017
Posts: 199


DW is increasingly refusing to set foot outside the house, often for many days running. I am concerned that this is going to set up a real problem the day of placement. Once I get her into the MC facility, I know the staff will help me finesse an exit, but I haven’t yet settled on a strategy to get her out of our house (oh, that sounds horrid, but you know what I mean).

The best idea I have come up with so far is to turn the furnace off first thing in the AM, then go through some motions, “make some phone calls”, and tell her, as the house cools down, that the furnace is busted and can’t be repaired for a couple of days. It will be frigid outside, and far too cold to endure at home. So I will make arrangements for the facility down the street to put us up for the night.

Think that’ll work?

Any better ideas?  

 

 


LKAC
Posted: Thursday, January 11, 2018 9:20 PM
Joined: 3/22/2017
Posts: 294


Good luck Mr. Toad. You are such a loving creative and resourceful caregiver that I am sure you will have a plot that will work! Would she be willing to leave the house to show off the "puppy" she loves?

 


Mike&BrendaTX
Posted: Thursday, January 11, 2018 11:13 PM
Joined: 7/10/2017
Posts: 218


Mr Toad,

Turning the heat off seems like a LOT of trouble.  Is there someone from the MC that can come down and help you? If you can get her in a wheelchair it seems like you can just wheel her out despite protests.  There must be a simpler way....

Since she sees you as "Daddy," maybe a fatherly authority can do the trick?

Any friends or family that can help? If she has a friend or nearby family member, maybe she can come over and they can go out to a restaurant for coffee, and then go to the MC from there.

Kind of sounds like she knows what's coming and is resisting.

Mike


Jo C.
Posted: Thursday, January 11, 2018 11:20 PM
Joined: 12/9/2011
Posts: 8592


Good evening, Mr. T.   You are on the right path by using a therapeutic fib to salve your dear wife's feelings and gain her cooperation.    Since you know her best and what her belief system is most likely to be, whatever fiblet works best will be the ticket.

One of the things to think about, is that our LOs do not like a lot of disruption going on around them, and often do not like to see their belongings fussed with.  In light of that, if you can have her clothing, shoes, toiletries, etc. already over in her room and in place, that would be good in keeping her more centered and keep kerfuffles from happening.

Since you are in snow country and since she is with you in the house, it may be hard to do this, but if you can make arrangements to have her favorite chair brought to her room, pictures for the wall, framed photos of family (not just for her, but for staff to see her connections too), perhaps a favorite bedspread for the bed and a favorite afghan; anything to make her comfortable and seem "homey" may help her feel a bit less out of her element.

Little Hasbro may become an issue as he may find himself kidnapped by other residents, so that will be something to think about.   If she is dependent upon Hasbro, and must take him with her, you may want to have a "spare" at home, "just in case."  Also, if eyeglasses are worn, you may want to have another pair at home as eyeglasses seem to grow legs and wander in a facility.

It is also good to remember that not only our LOs have a period of adaptation, we too have our own adaptation period and our feelings can run up and down the entire emotional spectrum during the early days following placement.

You are an extremely intelligent person, and have the gift of being able to feel another's feelings very easily; you are also creative, kind and thoughtful, you are doing a very good job and as always are an advocate par excellence.

We are with you in spirit and are thinking of you and your sweet wife;

J.


ladyzetta
Posted: Thursday, January 11, 2018 11:29 PM
Joined: 2/16/2017
Posts: 388


Mr. Toad

When I took my DH to MC his caregiver who I had helping me with him at home went with us. We told DH we were going to go meet some of the caregivers friends. Then we followed the caregiver to the facility I pulled up to the front door and the caregiver came to help DH out of the car and I said I will park the car and be right back. I did not go back for 3 days and cried all the way home. Of course this was all planned out I could not have done this without their help. Then the next fiblet was when he asked where I was they told my DH that we were both there for testing that the Doctors wanted done and I was in a different room. The facility will have a lot of good ideas that may help you. Good Luck, Zetta 


MrToad
Posted: Friday, January 12, 2018 8:39 AM
Joined: 7/13/2017
Posts: 199


Thanks folks for the good ideas.

I am indeed already engaged in yet another skill I never thought I'd have to develop: "surreptitious packing" (a box of her art and photos, a bedspread, some of her clothes, etc. all put together while she was sleeping and put out in the garage out of sight.  There's also an extra easy chair from the living room now covered in a sheet out in the garage, and so on. )

The plan is to have a companion/home aide visit with her one day while I schlep all this stuff over to her new place and get it set up.

As to getting her out of the house, if I need to, I will try various persuasive stratagems (like going to visit grandbaby), but I still know where the thermostat switch is.


Marty Cares 79
Posted: Friday, January 12, 2018 9:15 AM
Joined: 11/1/2017
Posts: 98


Wow, I think you are so RITE ON in the way you are making the change.The furnace idea sounds good,Fiblets make it easier for all.Placing her personal items there should help,You will miss her but it becomes necessaryGood Luck and God Bless


elainechem
Posted: Friday, January 12, 2018 9:36 AM
Joined: 7/30/2013
Posts: 5470


Turning down the heat seems kind of drastic to me too. Can you lure her out with the promise of an ice cream or other treat? Perhaps someone from the facility can come over and help you get her into the car. Often, a total stranger can get our LOs to do things that we can't anymore. Maybe Hasbro wants to go for a ride? Or you need to go to the store to get more food for him. 

 And you should definitely get more doggies as spares for the times one goes missing. 


Jo C.
Posted: Friday, January 12, 2018 9:57 AM
Joined: 12/9/2011
Posts: 8592


You are doing a really great job of anticpation and prevention of problems.  I wonder if DW resists going outside because it is SO bloomin' cold where you are.   This from a transplanted Michigander who now shivers when the temp falls into the 60's in winter in the land of make believe and the Pacific Ocean.

Good idea you have to move all stuff when she is otherwise engaged with a "friend" who is visiting; you have capably got it covered.  Please take good care of you too and try not to overdo; why not hire someone to do the heavy lifting and hauling.  

Reading your Posts brings back strong memories of when I was doing the same thing; logic told me that it was absolutely the right decision, (and it really was), but my heart was feeling the grief of it all, my brain was throwing out moments of stark guilt, and then there were those moments of second guessing myself, all on top of the running about to get it all together as very best as could be, at least I hoped so.  Seems for many of us, this is part of the process.  If we were not caring and loving people, it wouldn't make a dent in our feelings; but we do care, so we get all the bits and pieces that spring to the surface in such a situation.

Oh boy; on admission day, I was a bundle of quivers and quakes; frankly, for a strong person, I was a bit (more than a bit) of an internal mess, though the outside kept smiling for the sake of my LO.  I imagined all sorts of dreadful possibilities that could happen; the worst imagining being the possibility of an overwhelming epic meltdown of my LO.   I feared what may happen, and of course, my imagination was far worse than the reality.  In fact, everything went far more smoothly than I could have imagined.

The staff of the facility were marvelous.  They had asked in advance what my LOs favorite snack or food was; it was a fruit plate with cottage cheese.   When we arrived, the room was cozy; I had everything in place and it was actually nice.   The administrator, social worker  and an aide came to the room to great us.   They did not overdo, it was just a nice, soft, social greeting.   When we were settled in, suddenly, a fruit plate with cottage cheese appeared and was greatly appreciated by my LO who was smiling big smiles.

I exited stage left quietly as the aide assigned to my LO stayed and engaged in soft conversation.   All was well . . . . except there I was at 2:00 am, eyes wide open looking into the dark and wondering how my LO was doing.   So, I got up and made a phone call and found that all was well and my LO was peacefully sleeping and all had gone smoothly the entire afternoon and evening.   Talk about grateful.

Guess the most important thing is to remember that it quite often does take tincture of time for adaptation, and also that there is most often no perfection in all of this; there is only the very best that one can do under the circumstances; and you are already off to a really, really good start.

Big warm thoughts are coming your way again, and along with them, two soft hugs . . . one for you and one for your wife.  

J.


harshedbuzz
Posted: Saturday, January 13, 2018 7:56 AM
Joined: 3/6/2017
Posts: 647


Mr. Toad-

I am watching this thread with interest. We're planning a trail/respite that could become permanent in May. I hope with can do this as thoughtfully as you are. Right now I am focused on logistics. Do we bring in his stuff from the outset to keep it familiar or do we move him into neutral space with the idea that he's there for rehab until he's ready to come home which may or may not be the case. Mother hasn't made up her mind.

In terms of your fiblet with the HVAC unit, YMMV, but it wouldn't work here. My mother's furnace died in the midst of the historically brutal cold snap last week. It was 2 days before the company could arrange the install of the new unit. I encouraged my parents to go to a hotel. They stayed at a lovely place last year when we moved them from their apartment into their new home; dad loved it- he went to the pool and emptied out the minibar of snacks. This year, he wrapped up in his down duvet and refused to leave the bed for anything longer than a quick trip to the bathroom. 

Good luck.
LastFire
Posted: Saturday, January 13, 2018 10:59 AM
Joined: 2/26/2017
Posts: 157


When I took my DH to memory care I did not take many personal items.  He never seemed to relate to "things" at home, so I didn't see the need.  I did take his ruler, pencils, and tablets....he was an engineer.   My son and I told him we would be going for a ride and checking out the new building at the memory care.  I did not have any problems with him.  I didn't visit for a couple of weeks and when I finally did go, he tried following me out of the building.  The attendants distracted him with a snack.  He is so into himself (because his world has become so small due to the disease).  I understand why his personal comforts are so important now.  He wants to be warm, comfy, well-fed, secure, and treated kindly.  He cannot relate to the outside world; all he has now is himself.  I am so sad for him but he is not violent or angry or agitated.  He is quiet and alone.  I do so wish I would share his burden but I can only keep him safe and secure.  Your wife may call you "daddy" because you represent the safe, secure feeling she needs.  At any rate, don't stress yourself too much about how she will react.   She no longer has the same normal emotions (anxiety) that you are feeling.  Please let us know how the transition goes.
MrToad
Posted: Saturday, January 13, 2018 3:23 PM
Joined: 7/13/2017
Posts: 199


littlejo:

ouch.


MrToad
Posted: Saturday, January 13, 2018 3:37 PM
Joined: 7/13/2017
Posts: 199


Oh, I know this will be the right thing for her. She will sort of kind of miss me, but she has not understood me to be her husband for quite awhile now. This AM when I went to her bedside to wake her, she was genuinely happy to see me, "Oh Daddy, how nice you look. You got yourself some glasses!" I have worn glasses every waking hour since childhood.

I still love my wife as she is, and as she will be,  but I sure miss my wife as was. Living apart, and her getting the more intensive professional care she increasingly needs, will not change that.

 

 


Sweetwater
Posted: Saturday, January 13, 2018 3:51 PM
Joined: 10/6/2016
Posts: 98


Mr. Toad, OMG! I hope you disregard littlejo's response. I understand frustration and bitterness, but it needs to be directed elsewhere in my opinion. You seem to be the kindest person in the world and your concern about how to move your LO is indicative of that. There is no doubt in my mind that you will make the right decision about how to move her that is best for her and yourself. I truly enjoy and appreciate your posts on this forum and I wish you well in this next step of your journey with your wife. Good luck! Sweetwater.
jfkoc
Posted: Saturday, January 13, 2018 5:00 PM
Joined: 12/4/2011
Posts: 14414


Mr Toad...not everyone is going to understand the love and bond between you and your wife...most of us understand and are right by your side.


JJAz
Posted: Saturday, January 13, 2018 5:09 PM
Joined: 10/21/2016
Posts: 1372


littlejo wrote:
well all I have to say is your ridiculous ! you don't let her run you , you run her, who's the one with Alzheimer's ? you or her ! take control and call the facility you want to put her in and have them come and get her !  my god toad, why are you making yourself miserable with the one you love that doesn't know what's going on ? unless you can't afford to have her in a facility, get Medicaid to help.
Chill out.  Are you a troll?

Sayra
Posted: Saturday, January 13, 2018 7:04 PM
Joined: 8/10/2016
Posts: 828


(((MrToad)))
Eileen72
Posted: Saturday, January 13, 2018 8:01 PM
Joined: 6/10/2017
Posts: 313


Dear MrToad,

The post from littlejo was harsh.  Please read her profile and I think this speaks more of what she is going through than what you are doing.  Your posts have always been encouraging, loving and thoughtful.  And sometimes downright hilarious.  And we so need that laughter.  A sincere thank you from someone whose DH was placed June 30, 2017.

That day was the hardest day of my life, but for DH it was the right decision.  And I will always do what is best for him.  His life has become very narrow but he is thriving in that environment as best as anyone with a brain disease can thrive.  The physicality of his situation, constant falls, prevented me from caring for him by myself any longer.

IMHO, you are doing all the right things.  You, as her husband and sole caregiver, ( for many years) know her better than anyone else.  As each day goes by, I have found I love him more each day.  I visit most days and take him a home cooked lunch and am grateful I am able do to this.  My hardest task was me accepting this is our new normal. 

Please continue to post.You have helped me and I believe many others on this board.  My best thought and prayers are for you, your DW, Daughter , and the sweet little baby as you travel this difficult part of your journey.  

Eileen


mike9569
Posted: Saturday, January 13, 2018 8:03 PM
Joined: 2/4/2014
Posts: 592


Mr. Toad-

Rather than do a placement  post-mortem to determine mistakes made, lessons learned, I applaud your efforts to do a placement pre-mortem (my terminology--sorry).  Determine NOW what you think will be the best approach, smoothest transition, optimum moment to pull the trigger, what enhancements your lovely wife would appreciate most and what would make her happiest.  My wife gave me 46 years of sunlight and 4 years of filtered shade; 100% of what she had to give and I still get the occasional bright shaft of love from her because she's genuinely happy in her new home and feels reassured and has her dignity.  I worked hard to foster that feeling and, no doubt, you'll execute just as well and give your bride something for her to cling to.  Placement is not necessarily for forever but, done right, generates the best result for both of you.  Everyone knows the stakes are high.  Best of luck.


MrToad
Posted: Sunday, January 14, 2018 8:48 AM
Joined: 7/13/2017
Posts: 199


 

Thanks for the various electronic pats on the back and verbal hugs, folks. I sure understand that everyone here has their own pain, so an occasional not-so-nice comment is merely a sign that we are all human. I am sorry for the pain, the anger, the frustration we all are bearing.

DW spent much of yesterday in her bedroom in an extended conversation with her electronic doggie. When I went in to check on her, she told me “Get out of here; we don’t like you; you’re mean to the doggie!” (Gee, and I fed him first thing, even took him for a walk, with an extension cord, of course.) Yes, it’s time.

(Product plug: the Joy For All Pup impressively responds to touch and voice, but stopped doing so after two weeks. One call to Hasbro, however, resulted in an immediate, no questions asked replacement via Fed Ex.)

I now have several alternative  scenarios for getting her out of the house on Placement Day.

Plan A is to persuade her to attend a music program over at “the Clubhouse”. As an inducement I may say that the clubhouse has invited a bunch of little kids to also attend the program, and that our granddaughter is coming too.

Plan B is to go to lunch at favorite diner, then, oh by the way, go to the "clubhouse" for the music program

Plan C is for the furnace to break down necessitating us to move to a warmer building while they fix it. Avoiding cold is a strong motivator for DW. ( Variation: this could become a gas leak requiring urgent evacuation of the premises.)

Plan D is to receive an urgent request from working daughter for us to go and pick up grandbaby from day care because she has a fever. We've had to do this before. This will get her out of the house. We'll drive around a bit before getting a call that it was a false alarm, and then oh by the way go to the clubhouse.

These are not all mutually exclusive, especially given the “Magic Slate” nature of DW’s short term memory these days. 

 I’m sure I can make something work.

Pretty sure.

 

 


Jo C.
Posted: Sunday, January 14, 2018 9:09 AM
Joined: 12/9/2011
Posts: 8592


Well, Mr. T., I can see all your years of executive decision making and problem solving coming to the fore.   It looks as though you have it all covered with contingency plans.   On "the day," when taking DWs emotional temperature, you will come up with just the right personal approach to fit whatever is happening on that day; you are very skilled at that. 

You are a very thoughtful fellow and are doing great . . . . (you are also a fellow who can  make a killer Sicilian Lasagna; can't leave that out.)   A man of many talents, compassion and thoughtfulness.  You have been an inspiration to many of us here.  I will be mentally keeping fingers crossed on your behalf that all will go smoothly. 

What day is the planned admission?  Please do keep us posted as to what is happening, we will be thinking of you and we will be standing next to you in our thoughts.

J.


Mike&BrendaTX
Posted: Sunday, January 14, 2018 9:15 AM
Joined: 7/10/2017
Posts: 218


Mr. Toad,

From one scientist to another, "Magic Slate memory" totally nailed it. Thanks.

Mike


MrToad
Posted: Sunday, January 14, 2018 10:13 AM
Joined: 7/13/2017
Posts: 199


Jo C:

The 17th is the target day. I thank you for your kind words.

(When the dust settles, I will write out my lasagna recipe and figure out how to get it to you.)


jfkoc
Posted: Sunday, January 14, 2018 11:03 AM
Joined: 12/4/2011
Posts: 14414


Please, we all want the recipe!
Eileen72
Posted: Sunday, January 14, 2018 3:02 PM
Joined: 6/10/2017
Posts: 313


Your plan A, B, C, D are all thoughtful and caring and as you have demonstrated , you can “dance your DW’s dance”  as needed. 

My best to you and your family.  

I , second , we all want your recipe.


w/e
Posted: Sunday, January 14, 2018 5:11 PM
Joined: 3/7/2012
Posts: 1599


I will not attempt to give you, Mr. T, any suggestions because my daughter and I did not experience the heartbreaking decision that you and your daughter had to make: the decision of the medical necessity for a different habitat under the circumstances.

 The decision is love in action. Compassion in action. Thoughtfulness. Care in action.

How painful it must have been! How courageous you and your daughter are! Yes. I believe that it was a loving, compassionate, thoughtful, and caring decision for your beloved's benefit and for her needs. Furthermore, from what I have read, a decision that also had to be made because your physical condition is not in the best of shape. What a difficult decision to make for the good of the family unit!

What empathetic heart! 

I did not experience change in habitat, but I did experience 10+ yrs of dementia/ AD care 24-7/365. And the shock of the very, very, very sudden cardiac death of my 68 y/o immortal beloved, at home in my arms. Some people have said that I was lucky that he died at home. That it was fortunate that he did not have to endure stage 7.  Am I "lucky"? ... Not really.

From taking a few reads of your postings, I believe you will be in-tune with the rhythm and the melody of the moment. In spite of doubts, fears, the trembling of the legs, the fast palpitations of the heart, and the lack of oxygen to the lungs, I know that you will do a fabulous "dance" on the 17th. With the genius of your intuition,  you will know what to do, when to do it, where to do it, why to do it, and how to do it..."Break a leg", my friend. 

Recently, you shared with us about a lovely and joyful day when you and your beloved were dancing for the baby granddaughter. Keep dancing with your beloved (and the baby, of course!). Music, singing, and dance. It is good medicine for the mind. And for the heart.

 I was just listening to a touching song written and performed by Leonard Cohen, "Dance Me to the End of Love." There is a line in it re the Holocaust, "Dance me to your beauty with a burning violin." It made me cry. My immortal beloved died 4 yrs ago this month. I still dance for him. And with him.  I celebrate our love, daily. On the far side of the desert of existence, he is still my oasis of divine love and desire. We had the full blessing of Aphrodite, daughter of Zeus. But, I must confess,  Dementia Alzheimer's is my quiet personal holocaust. The pain remains. And I will never forget the moment of death.

Kisses and hugs for your family.


Jo C.
Posted: Sunday, January 14, 2018 6:56 PM
Joined: 12/9/2011
Posts: 8592


Thank you, Mr. T.   (Do you cater?)   It would be wonderful if we could all meet around a table (I will bring the red checkered tablecloth and napkins), with a good lasagna, salad, a few bottles of vino and lots and lots of camaraderie and even laughter.   One can dream.   I feel like some of the most awesome people I have met are here on this marvelous Message Board.

w/e, one of my favorite quotes that comes from one of Leonard Cohen's writings is "Ring the bells that still can ring,  forget your perfect offering,  there's a crack in everything,   that's how the light gets in."

Somehow, that just seems to fit so many different things that happen in life.  As I become more, ahem, mature; this seems to fit even more often

So the 17th.   We will be sure to have that on our calendars and we will be thinking of Mr. T., his beloved wife, and his lovely daughter.  It is a day to have good thoughts from friends.

J.


elainechem
Posted: Sunday, January 14, 2018 8:09 PM
Joined: 7/30/2013
Posts: 5470


Or... the day arrives and you say to DW, "Let's go for a drive," and she does! All this worry could be for nothing! It could happen.
LKAC
Posted: Sunday, January 14, 2018 8:18 PM
Joined: 3/22/2017
Posts: 294


Mr. T, I have enjoyed reading your thoughtful and well plotted posting as though it were a novel and  can't wait to read the next chapter...and then what  happened? My bet is that  something completely unplanned will occur and you will dance your dance with all the right moves and magic will happen for your bride. And thanks to all who gave  such  lovely responses, what a treat, to visualize a bountiful table with lasagna surrounded by the

magnificent group of folks on this site. Bon appetit yall,


LKAC
Posted: Sunday, January 14, 2018 8:20 PM
Joined: 3/22/2017
Posts: 294


Mr. T, I have enjoyed reading your thoughtful and well plotted posting as though it were a novel and  can't wait to read the next chapter...and then what  happened? My bet is that  something completely unplanned will occur and you will dance your dance with all the right moves and magic will happen for your bride. And thanks to all who gave  such  lovely responses, what a treat, to visualize a bountiful table with lasagna surrounded by the

magnificent group of folks on this site. Bon appetit yall,


 
× Close Menu