Life after placement(1)

toolbeltexpert

This morning I was reading a post and now I can't find it again. But the person had placed their lo about a year ago and they visited everyday brought food ect then the poster said their lo had a stroke and everything changed, life was different. It was like they were describing my life now.  Before any big event has happened. I wished I had paid more attention to the topic argh.

My whole day revolves around my visits. I go in the morning and at night bring food. I go home and finish cleaning and dishes or laundry then sleep till tomorrow. I fill my free time with work around the farm, I tried to go to something I thought I would enjoy and all I thought about was making it on time that night. 

I sure miss her

Now I have an opportunity and I am going to move my dw into a true memory care facility.

It's 30 miles one way, but it's what she needs and I won't change my mind. It's very affordable and a desired facility.  Her first placement was the only opening around and I was pressured to get her placed.

Now I see my routine getting more complex more time driving,coming home in the cold months in the dark. But she is all I think about. 

Life for a caregiver may change after placement. I would love to hear about how others have dealt with this part of the big d road.

Stewart

Hoot619

Stewart,

 At the new place she will be in maybe you will have enough faith in them to handle the evening meal.  Watch what goes on for a while each time you visit her, It has to be a lot better than the other place. Maybe you can back off a little or stay longer on 1 visit a day.  I know you love her a lot, hope you can figure out what is best for wife and you.

 Night or dusk driving is bad around here.  Deer in rut chasing does, you sure can't see as well at night.  Headlights kind of blind us  Hoot

dayn2nite2

There is no earthly reason you should be visiting twice a day.  She will never learn to depend on the staff if you are always there.  I certainly hope you weren't intending to do that at the new place.

I understand for now you miss her, but once a day is fine and the visits should be less than an hour.  In a few weeks, go to every other day if you like and you can go a couple of times a week after that if you're comfortable.

You aren't going to last if you keep going twice a day or even every day.

New kid in town

This is the first time I really wanted to post anything.  I've been lurking for about 6 mos. But I always just wanted to read.  Your post here struck a chord and I decided to enter the thunderdome.

I spent about four years as my wife's caregiver. Like you I just figured that that was the way you do this.  I could see her slipping during that time of course, but she never did anything that couldn't be handled and with some modifications in the daily operation life went on.

That ended about a year ago when she really started changing.  Frequent hallucinations, most of the day in bed and most of the night moving around, and lots of issues calling the sheriff to have me removed from the house brought the quiet to an end. 

As I said, about a year ago I placed her at a MCF locally.  It was nice but I really wasn't crazy about it.  Then came the plague.  My wife tested positive and was isolated for 10 days in her room.  At the end of that event she could barely walk and I believe she had pneumonia-another week in isolation and not walking.  

Bottom line the MCF wouldn't take her back until she could meet their physical agility requirement.  Off to the SNF.

She responded very quickly to that enviornment and within a week she was set to be discharged-until I found that the SNF had a MC wing...with an opening.

There's a lot more to it than that but that is where she has been for very nearly the whole year.  She of course wants to come home but I see her at least every other day and I have been pretty successful in convincing her that she is in rehab and she needs to remain there until the doctors say she's OK.

I realize that this is getting long but I just wanted to tell you that putting your wife in a MCF is probably the best thing you could do for her.  We live in the country also (only 12 acres) but that seems to be enough lately.  I was in a position that I couldn't leave my wife to mow, work on fences, go to the store, pick up medicine...you know the list.  She had no one around to talk to and she was just wasting away.  Now in the SNF she has people to talk to and things to do.  It was the best decision for us.

Yeah, there's no way to describe the lonliness and sense of loss, but like I said I see her at least every other day and we're finding that we can sit and talk and not have to be preoccupied with the chores of daily life.  

Bottom line is I spent about four years wondering everyday what I was going to do with my wife.  Now I've spent about a year wondering everyday what I'm going to do without her.

But, she is in much better shape.  I'm as happy as you can be under these circumstances.

Scott

toolbeltexpert

Scott welcome to the forum. Thanks for sharing your experiences. That's where we learn from each other. Sometimes just writing it out helps. You put it well when you said, " Bottom line is I spent about four years wondering everyday what I was going to do with my wife.  Now I've spent about a year wondering everyday what I'm going to do without her."that struck a chord with me. My dw's hallucinations  and delusions almost got me in trouble with the law, they told me to stay in my room for the night, like that was gonna have an effect on my dw.

 Please keep posting. Again thanks.

Hoot that's along the lines of what I was thinking. 

saltom

DH is in SNF until  he gets enough strength to come home.  I've just learned they have a MC unit. I'm going to check it out.  I spend about 3 to 4 hours a day at the SNF with him now but think of it as temporary as he still can be cared for at home if he gets some strength back. And my being there seems to help his appetite and willingness to do the OC and PT.  He tried to escape twice but has settled in now. But from all I've read on these posts, it is wise to have a MC place lined up for when the time comes.  Thank you everyone for sharing your MC experiences.

Sligo177

Hi Toolbelt, and everyone,

I guess it might depend on whether your LO has a sense of time or days, and most do not.  I get how you feel!  My DH went from home to hospital to rehab facility to MC. He was out of our home for almost 2 months before being placed in MC, and it's been a month there.  I still go through al the guilt and worry about not being there enough with DH, but he is safe and gets so much more there than he would at home.  I miss him and I am trying to figure out what to do with my days - It's hard to go to bed at night and think of him in MC.  I used to call at night to ask the caregiver how he was doing.  Currently, I stay away one day a week, and there's no difference when I come back.  If he happens to ask, I just say I was here yesterday. I spend from 1 - 1 1/2 hours ideally, if it's longer, then departure is harder.  And my gosh, only once a day, God bless you, that must be so hard.  You CAN take a day off, and if you want to, take a few, as others have said - I'm still too needy to do that, and yet here I go telling someone else to take time off!  Ha ha.  Just please know that you are doing the best thing, and I will keep telling myself that, too.  Have a good day.

Ed1937

toolbeltexpert wrote:

Life for a caregiver may change after placement. I would love to hear about how others have dealt with this part of the big d road.

When I placed my wife, the problem I had was much like M1's, although not nearly as bad. I stayed away, but our kids were up there to visit, so I had good feedback on how things were going. 

On a Thursday morning, I received a call from MC saying she had been taken to the hospital, unresponsive. It had been three weeks to the day since placement. I had planned on visiting her two days later to see if that was doable. She passed Friday morning.

I know this is much different from your situation, but since she passed, I haven't had a desire to do anything, but forced myself to attend a MLB game with a son and daughter. This was very hard for me. Then I went with our daughter to a local festival to see a band, "Fleetwood Mac Mania". The band was great, but we couldn't stay because I lost it there. Had to leave.

Although our situations are now different, there are some similarities, since out LOs are not with us. After just about three months since her passing, I went to a celebration of life for my SIL who passed (dementia) last spring. I haven't seen her kids for some time because none of them live around here anymore. But I actually had a good time visiting with them, and it was the first time I actually had a good time since my wife's death. 

So I guess time is the great healer. You will do what you have to do, and life will get easier, although you might not realize it. I still visit the cemetery once or twice a week, and I talk to her. But she doesn't respond.

Beachfan

My DH is in a MCF 38 miles away, “over the mountains and through the woods”.  I visit once a week and the weather has to be ideal- rain, snow, ice, fog, snow squalls, darkness- - none of this is tolerable.  The big difference for me is that DH does not know me, does not communicate, can no longer do anything for himself or by himself,  and certainly does not know if I am there or not.  

And so, I go about living, day to day, alone but not lonely.  He is clean, content, and well cared for.  I can’t ask for more at this point.  I miss him and love him with all my heart, but life goes on…..for all of us.  It will get better for you, I promise.  

toolbeltexpert

Saltom thanks for sharing your experiences. That sounds like a good plan, having a bed open these days is a tough choice, you will know when it's right. The long visits are good for me and dw, but I know when she declines more my visits will be short and sweet. She is still with it in some ways.

Sligo my dw doesn't know the day or month year. My morning visit is to get her setup, we pray do a devotion most of the time, these are spiritual things like gathering on Sundays. Praying together is a part of who we are. Every caregiver is just a different as a pwd. I have a heart to serve others and now it's more about my dw than others. I have been humbled to serve in other countries and other states as well as other counties in Tennessee. My dw supported me while I was serving others now it's her turn. We only have one life to give, but many lives to give it to.

I am awed by the many who can do at home and just as awed by those who don't. We all all doing the best we can. I will do it my way. But I can learn from others who have gone down this road as a 24/7/365 caregiver.  

toolbeltexpert

BTW I did find the post I referred to. It was in Bill's post about the calvary not coming and it was Paris who posted it. I really like hearing from everyone here, I can Connect to where someone is in their journey, that maybe where I am going? Can't never tell!

Thanks Paris if you read this.

Paris20

You are most welcome.

David J

Tool Belt Expert,

My wife was in an MCF about 5 miles away. She went there when I needed surgery done, and never came home. I didn’t visit for the first week, but after my surgery and when the staff said she was adjusting well, I started visiting her 3 or 4 times per week. If she was going through bad periods, I would go more often and stay longer. At first, she recognized me, and would try to leave with me. The staff told me that within a minute of my leaving, she went back to her favorite activity: walking. I realized that the frequency and length of my visits weren’t that important to her. It was more important to me, so I visited when I wanted, for the length of time I wanted. If I was busy and didn’t want to go, I didn’t force myself. I’d stop in for a few minutes on the way to the supermarket. I’d go in the afternoon and get her to nap and I would sleep too. As time went on I started to take time for myself; I went on a vacation, I visited family, met with friends more often, etc. I knew she was never coming home and that I needed to start thinking about the rest of my life and what I would do with it.

When your wife is in an MCF 30 miles away, you won’t be able to see her as often or be as spontaneous, but you can still have good visits. Do your due diligence to become comfortable with the care she is getting, then visit less frequently. You’ve been a good caregiver, and moving her to this better facility is part of that good caregiving. You will have more time to yourself to start working on building your next phase of life. 

My wife passed away 4 weeks ago today, at the MCF. I was with her for her last days and she passed quietly and peacefully. I believe I gave her the best care that I could, including the past year at the MCF. 

I’ll be thinking of you, Tool Belt Expert.

Dave

toolbeltexpert

Thanks Beach fan I appreciate your sharing. I know unless something major happens that this will be the road my dw will be on.

Dave thank you,your sharing does mean alot to me as does all the others.  I see the hope in all your experiences. I have tried to express my thoughts but the back button is doing double duty. 

Stewart

Joydean

Steward only you can know how often you visit your wife. Prayers for you and your dear wife.