How to handle move to memory care

DaughterColl

My mother had a stroke ~ 6 months ago, several days before her 90th birthday. Prior to the stroke, she was slowing down but still living on her own and doing very well. The stroke affected her memory and threw her into instant dementia, which has been getting worse. My sister and I tried to take turns caring for her, but quickly realized we were not equipped or trained to effectively handle her nor the stress involved in trying to do so. 

We are about to move her into a memory care facility. We are very worried about the stress of the transition, even though everyone is telling us it is for the best. Looking for support resources and advice as we go through this difficult time, which was what brought me to this site and this, my first post.

My mother is exceedingly attached to my sister and me (especially). I know she will NOT want to stay at the facility we will be moving her into next week.  We have been gently trying to tell her where she is going, but I don't think she really understands.

I know I am future tripping here.  The guilt and worry about this transition is excruciating.  I am fine one moment and then crying the next.  I know I really lost my mom when she had her stroke, even though she is still alive. It wasn't until someone told me I was grieving that I realized that is what I was feeling.  I feel like I have been walking through water for the last six months. I called the employee assistance program through my employer and just started seeing a therapist.  I have a supportive husband, family and friends, for which I am so thankful, but a therapist is necessary, too.

We don't want my mom to feel abandoned or scared, so will be putting a phone in her room.  Any advice if this is a good idea?  Also, is it best to leave her on her own for a bit to transition or to see her often?  I know she will continually badger the care staff and us, saying she wants to leave.  How do we respond?  

As we get closer to the transition date, the more emotional I am.  I need to be strong and positive for my mom's sake, but I am just barely holding my emotions in check.  I would really appreciate any advice or any references to resources.  My mom and I have always been exceedingly close, so this is so hard.  It would be a blessing for her and the entire family if she would just pass and spare her the agony of this move.

Thanks in advance for your support.

harshedbuzz

DaughterColl wrote:

My mother had a stroke ~ 6 months ago, several days before her 90th birthday. Prior to the stroke, she was slowing down but still living on her own and doing very well. The stroke affected her memory and threw her into instant dementia, which has been getting worse. My sister and I tried to take turns caring for her, but quickly realized we were not equipped or trained to effectively handle her nor the stress involved in trying to do so.  

Dementia related to a stroke is truly baptism by fire. I am sorry you and your family experienced this.

We are about to move her into a memory care facility. We are very worried about the stress of the transition, even though everyone is telling us it is for the best. Looking for support resources and advice as we go through this difficult time, which was what brought me to this site and this, my first post. 

Do your due diligence and listen to those people. When you've found a quality facility, with memory informed training and activities, it will allow you to go back to being a beloved daughter rather than the person insisting she bathe, eat and take her meds. 

My mother is exceedingly attached to my sister and me (especially). I know she will NOT want to stay at the facility we will be moving her into next week.  We have been gently trying to tell her where she is going, but I don't think she really understands. 

It's probably best to stop talking about this. She doesn't have a say in this and doesn't have the cognition to understand the choice made on her behalf. I can appreciate that you want her "blessing" in this choice, but it's not going to happen. 

I know I am future tripping here.  The guilt and worry about this transition is excruciating.

The days leading up to the move are very hard on your heart and it's very easy to fall into a trap of worse case "what ifs". It would be prudent to work with the facility to come up with a plan to deliver her to the community. This might mean a "fiblet" along the lines of a temporary rehab to get stronger after the stroke. We did something similar- it would have been unnecessarily cruel to tell dad he lived here now. Dad's facility suggested bringing him to the community just before their daily snack and movie as a distraction. They seated him between 2 of the more outgoing residents and shooed us away. 

He did have a couple of weeks where he was angry and wanted to go home, but he actually settled in more quickly than I expected. Some places suggest no contact for a couple weeks in order to allow a PWD to bond with their new caregiving team. We didn't do that; I don't think it would have mattered in our case. 



  I am fine one moment and then crying the next.  I know I really lost my mom when she had her stroke, even though she is still alive. It wasn't until someone told me I was grieving that I realized that is what I was feeling. 

The weeks pre-placement were the hardest for me.

Yes, it's an ambiguous loss. A dear friend of mine who was caregiver to her mom described it as "She's a nice enough little old lady, but she's not really my mom".

I feel like I have been walking through water for the last six months. I called the employee assistance program through my employer and just started seeing a therapist.  I have a supportive husband, family and friends, for which I am so thankful, but a therapist is necessary, too. 

It's great you have a team supporting you. 

We don't want my mom to feel abandoned or scared, so will be putting a phone in her room.  Any advice if this is a good idea?

We did not. Dad couldn't reliably use a phone by the time we placed him so it was moot. But a number of people here would say "don't do it". PWD who are unhappy can and do make non-stop calls to family members demanding to be picked up. One poster recently talked about having to take mom's phone away because she'd been calling 911. 

One suggestion for a frequent phoner is to pick a time of day to call them and let the other calls go to voice mail. A couple people have even set up a burner phone just to receive calls from their LO to which they record a personalized out-going message to calm them down. 

  Also, is it best to leave her on her own for a bit to transition or to see her often?  I know she will continually badger the care staff and us, saying she wants to leave.  How do we respond?   

If you've chosen your facility well, the staff will be trained in methods of validation and redirection so this won't be a problem for them. Like I said, we did visit daily early on for an hour or so. Dad could be pretty verbally abusive, so we only visited in the public areas of the facility. He still had enough on the ball to not excoriate us with others around. Other families have success with taking a 2 week pause on visits. 

As we get closer to the transition date, the more emotional I am.  I need to be strong and positive for my mom's sake, but I am just barely holding my emotions in check.  I would really appreciate any advice or any references to resources.  My mom and I have always been exceedingly close, so this is so hard.  It would be a blessing for her and the entire family if she would just pass and spare her the agony of this move. 

I know that feeling. Around the time we moved dad into MC, we signed up with a new gerontologist who worked out of his MCF. This doc discussed discontinuing some of dad's medications in a palliative care model. We continued medication for his mood and anxiety as well as ADT to keep a recurrence of prostate cancer from causing pain. This may have led to him dying sooner than if his cardiac risk factors were aggressively treated but prior to his dementia he had expressed a desire not to exist in such a condition after his mom's drawn out death with Parkinson's.

Thanks in advance for your support.

Good luck as you move forward with your plans. I hope your mom settles easily. A month into care, dad had only positive things to say about those who worked at his MCF.

MN Chickadee

Hang in there. You have much to grieve and it's ok to feel that way. Grieving the loss of relationship with your mom, her incredible losses, her independence, the time robbed from both of you by this horrible disease.The days leading up to and after moving my mom to MC were the darkest of my life. I never knew the term "heart break" as much as then. I literally felt like my heart was breaking open. So much grief and loss and pain; it wasn't all that different from having actually lost her to death. I couldn't eat, couldn't sleep, couldn't think straight, my body was so stressed I couldn't maintain proper temperature. It was quite literally the hardest thing I have ever done. I would have given anything to spare her of that move. When I left her there and snuck out to let the staff take over with distraction I had that horrible adrenaline feeling like I would jump out of my skin. There was no better option, it was the best for her and her spouse and the rest of the family, but that was of little consolation during such a difficult time. But I got through it. This too will pass. The place was a good fit and has good staff. She did settle in and we have pleasant visits now, but it was a bumpy road to get to this point. It took her close to 2 months to settle in. She is content now for which I am grateful, despite inevitable feelings of sadness and loss seeing her there. In hindsight it was a good decision and I was glad I trusted my gut on the facility and timing. If anything I waited too  long, not the other way around. Try to remember you are doing this for her, not to her. You made the best decision possible with the information and resources available and that's all we can expect of ourselves. It's our job as their family and/or POA to keep them safe and that involves really hard decisions and roads to travel. We have a very difficult job. Just try to keep your head up, there is light at the end of the tunnel.

King Boo

Re-think the phone.  It's a portal to stress for the PWD and it is definitely going to stress you out when the 10 x a day phone calls start coming, particularly if she is saying "take me home".  You don't need this, especially if your sorrow is so great.  

Much easier to add a phone later than take it away.  It's not going to contribute significantly to an adjustment, don't overthink it.  

I would also encourage you to have hope.   New relationships can be formed despite a new situation for your Mom.   I was astounded at how many caregivers suffered along with me in sorrow in his decline and came to his bedside when dying, and even cried at his passing.

Even when I was not clearly identified by my parent, he was enjoying his TV, meals, occasional outings, etc.   

It's a weird new normal for us.

Consider having your sister go solo the day of placement.  You are not going to help facilitate anything if you are going to be emotional.   You need to be the calm, serene presence for your mother not matter what you are feeling.    If you know you cannot do this, spare both of you.  Stay home and visit later.