Should I stay or should I go?

M1

that is my current dilemma; now that i can visit my partner in MC (not tolerated by her at the previous facility) I am struggling to find the right balance. She wants me there, every day if I could be, though it makes her somewhat unhappy when I leave and there is a constant "why can't we just leave and I be with you?" I also am still deferring a lot of outside farm work that begs to be done (not much energy and currently sick from the grandkids), much less just having time to sit and vegetate, which is what I really feel like doing. I'm tired of the push and pull, the guilt, the worry, the grief. Not to mention putting up with the constant repetition, the sadness of "she doesn't remember asking me that two minutes ago" and "she doesn't know my name any more." I can't even really think about that because it's so heartbreaking.

Just a vent, Guess I'm down today. Need to go to the dump, the grocery store, the feed store, mow, and spray the fenceline. Maybe if i get those things done at least I'll feel better.

Ed1937

M1, there's no doubt in my mind that you need a break. You don't have to be up there every day. You have other responsibilities to care for too. I'm sorry you just can't seem to get a break. If you have to force yourself, do it, but take a break. Our minds really play havoc with us. I have a feeling you already knew everything I said.

mrahope

FWIW, I often feel a bit down, as you describe it, and I can tell you have every reason to be. I tend to be a "worker bee" and it often provides a distraction to me to simply work on stuff. I've cleaned out our entire spice cabinets because I was too stressed to think about what was going on with my DH. That being said, however, the most important thing to do is listen to your own heart and soul and do what they tell you. Although sometimes work helps, once in a while I'm so far down I just lay in bed watching cooking shows. Just listen to your interior self and don't be afraid to follow your instincts. YMMV

RickM

Good advice mrahope!

gampiano

'You will be better company for your loved one if you give yourself a break. If you can't take care of what needs to be done, and have those things looming over your head, you will become resentful, and anxious."

This is what i say to myself when i'm feeling stretched. My DH is still at home, so when i am able to have a caregiver for the day, i'm out the door and i don't look back. Sometimes i don't even have a plan, and just take a book with me, drive the car to a scenic spot, read and have a snack and a nap.

You are fortunate to have Memory Care for your partner. If it were me, I'd take advantage of the gift of freedom.

All the best to you,

Maureen

jfkoc

I guess you would have to look at the pluses of visiting every day....for you and for her. If she is happy when you are not there then ??????

ghphotog

M1 That's hard. Guilty if do and guilty if you don't. Sometimes wonder if I put my mom in MC prematurely as she seems fairly coherent for MC and feel guilty for it every day. Worse at night when I'm lying in bed thinking about all of it but then I remember why I did. Have to go through it again at some point with DW.

Dio

M1, I completely understand your dilemma. I, too, am wracked with guilt for not visiting my DH since his move-in. However, I've determined that visiting him now will do no one any good. Do I want to take the chance of agitating him due to my visit and have the facility staff bear the brunt of the aftermath? Of course, there's a slim chance he may not get agitated, but do I want to hedge that risk? I do swing by the facility to drop off medications and treats to thank the staff, talk to the staff to keep up my rapport with them, and the facility has been very diligent in giving me updates and sending me photos of DH engaging in activities.

I can't explain it but I went through several weeks of deep grieving where I'd have bouts of spontaneous crying. As mysteriously as this phase surfaced, it waned just as mysteriously without me doing anything. Now that the bouts of crying have stopped, I've decided to use this "freedom" to take care of essential business, like getting my investments in order for my own future, purging my cluttered house, and most importantly working on my health. I know your situation is different. With that said, however, please take this opportunity to take care of yourself now. Guilt may still gnaw at you. Sadness may still cling. These are just some things we can't deny or shake off easily. Know that you've done a stupendous job already since day 1 of this journey taking care of your wife. At this juncture, it's time to focus on taking care of yourself as being equally important, if not more. Taking good care of yourself is, in effect, actually taking better care of your LO.

Caro_Lynne

Wish I had sage advice to share; as others have so eloquently expressed. When I get into a funk, I remind myself that this too shall pass ❤️

loveskitties

M1, every day will always have things for you to do in addition to visiting your LO.

What you don't have on your list is a daily "me time"...even if it is only an hour to do something you enjoy.

The only things critical are taking care of animals, monitoring LO's facility stay, and taking care of you.

This may not keep the blues away entirely, but at least you would have 1 enjoyable thing to look forward to each day...and in the big scheme of things...that small amount of time will not matter to the other things on your list.

M1

Sage advice, all. Like I said, mostly a vent. I'm too tired to have much that I want to do right now, personally--maybe some of it will come back eventually.

Ed, I am thinking of you this week.

Jfkoc, she's not especially happy when I'm not there, I guess that's why i feel so pulled. She won't come out of her room (even for meals) and won't socialize, won't participate in activities. won't let the aides help her shower, won't let the housekeepers clean her room.

I did end up staying home today and got my chores done. My eyes look like something out of the exorcist (conjunctivitis) so they woulnd't have wanted me there today anyway. Tomorrow, we'll see. The afternoon mowing and spraying was punctuated by a big fat rattlesnake in the middle of my driveway. Didn't even pause to take a picutre, you'll have to take my word for it. Wide berth.

Denise1847

Dear M1, Can you get some advice from the facility about this. I am wondering if you didn't go for awhile, her resistance to socializing etc. would change. Is this the way she was before or is this behavior new? Maybe she holds out for you to be all of those things which kind of defeats the purpose of MC.

I hope you give yourself a break. Think about it, you cannot be everything to her - it just isn't possible. Please take a break for yourself as you have done all you can.

Quilting brings calm

Given that you couldn’t visit for months at the old facility - and that she’s not really changing her behavior now that you are coming every day - I suggest you cut back to no more than every other day. The behavior you mentioned in the reply sounds just like what she was doing at the old facility.

You know that she won’t be happy either way (you there or not)… so go ahead and get chores done because they need done. Go ahead and spend some time doing something that makes you happy. One of you has to survive this.

ButterflyWings

Hey M1,

I'm sorry you are feeling down right now. Completely understandable. You are such a devoted partner and this is such an unforgiving disease. For all of us dealing with this, I can say "if only"...right? But as we know, we didn't cause "it" and can't cure it. Which doesn't make it hurt any less.

It occurs to me this evening/morning, that as a medical pro and healer it might be so much harder for you -- not being able to fix your loved one. It is so hard and heartbreaking seeing/feeling them decline. I recall how much you went through trying to imagine having her at home a bit longer without complete disaster and then trying to get her into a place where she'd be safe, pain-free, and hopefully content. Sometimes no matter how hard we try, it is not to be. It seems like visiting even every other day might not be healthy for you, if leaving still brings sadness or guilt-inducing requests to leave no matter what. That can't be good. And you are important too. Can't let dementia take you both down.

I have the other problem with not being able to get things done because of the 24/7 (36-hour) caregiving here at home. DH is "easy", but Alz is not. I can barely do anything else around the house, nothing in the yard, and very little for me (and I mean basic - did I even wash my face before noon? - stuff) I think we will have to create a routine that schedules in "me time" as someone said above and make it as high a priority as the things we try to do for our loved ones. Easy to say, I know, but I am going to take that advice. It could save our lives and sanity really. I wish you some peaceful moments this weekend.

harshedbuzz

I'm sorry. This is all such hard stuff.

Being caregiver to a PWD in a MCF is different than doing so at home, but it isn't necessarily easier-- just different. And you still find yourself trying to carry 100% of the responsibilities of a household/relationship in which she was once carry at least half the load. And trying to practice self-care from a place of great sadness and loss. It's no wonder you find yourself running on fumes.

As for visiting, you'll find your way around what is most doable. I found by the time dad was placed, his orientation to time was such that he was completely "in the moment" with no sense of how often he had a visitor. I once heard him complain to an aide that my mother never came to see him, that I was there all the time and that his brother and cousin lived in a different hall and that they went out to clubs most days. In reality, mom and I pretty much went the same number of times-- about 3 x a week each while I tended to stay about an hour while she stayed longer. My uncle went once; I checked the logbook.

Another option might be to delegate some of this. Is it possible to hire out the landscaping work? Can friends, family or even a hired 1:1 aide provide your LO with some attention? A number of families where dad lived had a paid caregiver come in an dote on their LO a few days a week.

HB

Jo C.

M; I am so sorry for this dynamic; it is not an easy one. It is good to recall that it is still early days and she is still in that adaptation period to the new facility and setting, as are you. It may take several months for things to adjust for her.

I recall your sharing in the past that your visits were a "trigger" for her behaviors; I wonder if the frequency of the present visits may be triggering some of what is happening. What is her memory retention like? If she does not have good retention, that means very soon after you leave she has forgotten your visit.

Is it time to have meds reviewed? Is she on an antidepressant? Sorry; but I cannot recall.

It seems that your visiting less for a time may possibly be part of the answer to this dilemma. However; a meeting with the care team to develop small ways to begin to integrate her, and finding her comfort spots would be helpful. Her taking her room apart, etc.; she was in major construction with hands on, and she built and created so much in so many ways. . . . . this taking things apart and moving them, etc., may be the way she continues in what she was able to do in the past in the real world way.

HBs suggestion to see if you can hire a "friend," companion several days a week for her is perhaps a good idea. We did this for our LO and it went a very long way to settling things and making a difference in quality of life. It may be a good idea to look into this and to choosing such a person very carefully who would understand the sensitivity of the dynamics . . . someone she would respect and age of the paid companion may be important . . . would she respond to someone closer to her age or would it be better to have someone younger? This person can be part of the team and slowly, slowly engage one to one and then getting her out of her room a little at a time for an activity, or sharing a meal together, or doing some small chore, etc. Sometimes just talking together.

Perhaps cutting your visits to two or three times a week only for a short while may begin to break patterns; not showering or going to the dining room, etc., all those things become part of a slow moving care plan by staff in a team concerted effort. Staff should not get too comfortable with your visits and get a bit lax about meeting the challenges themselves because they are depending on you to do all.

Just so difficult; and no easy answers. Trying different approaches for even a small improvement until this period is passed through is all one can do. You of course need to be able to breathe, to take care of the property and all and sundry; you too are very important in all of this.

So hope that a way is found to bring peace to you both.

J.

Pinkscarf

Hi M1,

Thank you for sharing this. It is the exact thing I am struggling with today. In my case, I have a FT job with a lot of flexibility, so when my DH in MC calls me (almost every day) to ask when I'm coming to visit (even if I was just there), I can usually go over if I think he really needs me. The question I have to ask myself almost every day is, does he really need me? If my answer is "yes," sometimes I rush over only to find he has no idea he called me. If my answer is "no," the guilt consumes me.

My DH has been in MC for 21/2 years and it honestly hasn't gotten any easier. Some days I can deal and some days I can't. Today, I can't. I know where you are coming from.

jfkoc

Doesn't come out of her room? That really makes it hard....

M1

Yes it does jfkoc. I have to go today to take her to a derm appointment--waffled about making one, but she has some precancerous growths on her face that are bothering her, so I decided to take her.

I haven't been in since Friday because of non-covid viral respiratory illness/crap from my grandkids (one of the few downsides to being around young children). I'll be interested to see how she's done for four full days without me there. Especially whether any of the aides have been able to get her to shower (doubt it) or eat. Will update later.

White Crane

M1, I've been following your post and have been thinking about you. I hope you can find a solution that works for both of you. That said, I agree with others about cutting back on visits. You need time to take care of you. And you need time to consider how to get all the work done around the farm. I know it isn't easy for you. None of this is easy. Please remember though that you count too. Your health and well-being are important too. You have been a wonderful caregiver for her. Now let others take some of that care from you so you can have time to heal.

M1

I know you all are right, and i am aware of the very high stress levels. She was thrilled to see me this morning, not upset that i hadn't been there, and we actually had fun on our little outing- she loves her dermatologist, and we went to Wendy's for a Frosty and then drove around a bit afterwards just for a little ride through one of the local parks. She did great, went back without a fuss (though doesn't remember the place when she's away from it). We then had lunch, a brief drawing session, then let me leave without fuss when i said I was fading/still not feeling100%.

So overall, this is Sooo much better than where we were a couple of months ago. I think it is just going to take more time to figure out the balance, if there's one to be had. She's a difficult temperament, always was-- but she had the dermatologist laughing today and he said, "i can see why you love her." boy howdy, is that ever true.

Ed1937

M1, that's great! I'm glad you had a good day with her. Hopefully when you wake up in the morning, you'll be feeling good again. Glad you're on the mend.

Jo C.

It was touching to hear what a grand time the two of you had on your outing . . . I have been thinking of you two and wondered if the "outing" dynamic could be used in changing some of her behavior as to the showering issue. It would take cooperation with staff.

If you take her out once or twice more; will she have a feeling for being on an outing even if she may not retain the memory. She may like and value the idea of doing so when brought up.

To begin, once or twice when visiting; you can say that AFTER a shower, she will go on an outing with you and get a milk shake or whatever she likes. You help her shower and then off for a drive.

Next step would be that you tell her that you have hurt your shoulder or arm or whatever and that she needs to have a shower first and then you will take her on an outing to get a treat . . . BUT because you have hurt your arm, you will need someone to help you with the shower. At this point, if she has a favorite aide, then both you and the aide together help her in the shower in great positivity and of course then off to a happy drive with a treat . . . after doing this perhaps two or three times, she may evolve to being comfortable enough showering with the aide alone before your drive.

I know this is probably sounds silly and perhaps is not at all doable for several reasons, but it came to mind.

Being able to start getting her out of her room is another challenge. Do you think, if a trusted staff member asked her to "work" for them, and had her do small chores such as setting tables, or folding small items, or whatever small task(s) she would be capable of doing outside her room, would she do that? Being useful can be a big positive especially for a person with her professional hands-on work history. (I also wondered about perhaps a little depression after the move.)

She has been so active in her life; her building and arranging, etc.; has been a big dynamic for her. That is why I wonder if all the moving and removing of items from place to place over and over again in her room is kind of a substitute for that.

Things are so much better than they were at the first place, no comparison -( toilet paper included!) Sorry; that still has me shaking my head.

You have been, and are being such an amazing, caring and loving partner through significant trying, as well as emotional challenges. I respect all you have done in detail for such a long time. You rise to every problem and challenge with loving care, concern and intelligence. You are awesome and also teach all of us a lot.

J.

jfkoc

Yea! Now do take some time for yourself!!!

-Judith

harshedbuzz

@Jo C. said:

"Next step would be that you tell her that you have hurt your shoulder or arm or whatever and that she needs to have a shower first and then you will take her on an outing to get a treat . . . BUT because you have hurt your arm, you will need someone to help you with the shower. At this point, if she has a favorite aide, then both you and the aide together help her in the shower in great positivity and of course then off to a happy drive with a treat . . . after doing this perhaps two or three times, she may evolve to being comfortable enough showering with the aide alone before your drive.

I know this is probably sounds silly and perhaps is not at all doable for several reasons, but it came to mind."

This is exactly what the aide's at dad's MCF suggested when he refused showers for them. We didn't expect it to work as one of the reasons he was placed was that he refused to cooperate with mom's requests for or assistance with hygiene. But it did do the trick within about 3 showers (because that's how we measure time, lol).

Dad didn't like leaving his room either, but the young male DON was able to invite him out for music activities which he enjoyed. Sometimes the DON would drop him a note about a music event the morning of which made dad feel "invited".

YMMV.

HB

M1

Those are great suggestions--we will try to build them into the mix, for sure. You're right Jo, things are so much better---i think with time we will get there. She is declining though. Conversations make less and less sense. So there will be some things that get better, and some that don't.

jfkoc

And the day will come when there is pretty much no "conversation". Please do not let that keep you from being together.

I spent many hours watching mindless TV at the last. There is also jus t taking a walk, reading aloud, drawing/coloring/ making a collage, singing, dancing. Lot's of communication is not verbal.

-Judith

M1

HB, she hates most music programs....the nurse insisted we go a group singalong yesterday, and she was so disruptive it was almost embarrassing. If it's more of a concert setting she might listen...but a group thing just pushes her buttons. That's true for most MC activities, frankly. Yesterday it was mostly songs from The Sound of Music. I kept her distracted by telling her how much the von Trapp family hated the movie..that made her laugh. It's almost too much trouble to take her, she puts up such a fuss and makes a scene. I don't think this will ever change.

Quilting brings calm

M1 - is it possible that she’s reached the stage where she is uncomfortable around crowds, gathering of people she doesn’t know, or outside of her room? Maybe she’s reached the apathy stage - where it really doesn’t bother her that she’s got nothing to do and she is most comfortable in her room? I know we think that’s depressing , but she may not.

M1

Well QBC she was always uncomfortable around crowds and gatherings of people she doesn't know. So hard to tell, because this is nothing new. Ironic because I've always said that when she wants to, she can make friends with the paint on the wall. All of the aides love her, and she makes friends with them easily. But she won't make friends with any of the other residents.

harshedbuzz

@M1

My dad hated those as well. The MCF used to offer live music about once a week-- choral groups from the local high school or churches would come and perform. Once a month they had a family event at which the would have a DJ or live singer (guitar or piano).

It was hard to watch my former party-animal father become isolated in his room in MC, but the reality is he was just as isolated when he was home with my mom for the last 5 years. Given her personality, she her day-to-day were she at home at this stage would not necessarily be better.

HB