When Does This End?

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Marmotta: none of the medications my mother's doctor tried, helped her anxiety, I am sorry to say. I think that this is because the anxiety was not stemming from something like an anxiety disorder or depression, but from the dementia. In the end, the move to the care home, and relieving my mother of the responsibilities of looking after herself, seem to be what relieved the generalized anxiety. Not helpful, I know.

Having said that, it is worth trying some different medications, as long as the prescribing doctor knows about the dementia and knows what drugs are contraindicated for what types of dementia. You don't want to make things worse.

It is also worth assessing the daily living situation of the PWD (person with dementia) to see if there are any adjustments that can be made, to relieve any of the situations that cause the PWD anxiety. For example, the subject of money, bills, and finances makes my mother distressed beyond belief, so I make sure never to mention this to her, and have all her financial statements sent to me (I handle all of this anyway). When she brings up the topic of money, I am always quick to reassure her: "Medicare pays your bills here," "you have plenty of money," et cetera.

Mot, I am sorry to hear that you are having trouble getting a geriatric assessment for your mother. There is NO WAY I would take her to the ER for that process, unless it's for a pre-arranged admission to a Geriatric Psychiatry/Senior Behavioral Health unit. There has to be a neurologist or geriatric specialist somewhere in your area, who would fit the bill. I wonder if you could try asking the medical director/nursing staff at area nursing homes. My mother's fantastic neurologist (who treats only dementia patients in hospitals and nursing homes), is the staff neurologist who comes to my mother's nursing home.

And, yes, flabbergasted is a word, and a good choice here.

I'm so sorry.
 

mot

Registered User
May 4, 2016
73
0
USA
Finally moving mom!

The time has finally come to move my mom! All arrangements have been made and my hubby and I will be handling the move to the memory care community.

I would like to thank all of you who have posted for your support, kind words of wisdom and encouragement.

The RN who supervises the nursing assistants where my mom currently lives went to school with my daughter. They grew up playing soccer together. After my last post, I met with her to discuss mom's progression. We worked out a plan and that plan was that if/when she saw that mom had reached a point where she needed a higher level of care, she would text me asking me to come in to talk. I got that text about 2 weeks ago.

Things are moving fast and I'm trying to hold myself together. I have cried and prayed and prayed and cried. Even have asked God to release her from this earth. Is that terrible?

My main concern is this move. She's now in a one bedroom apartment and will be moving to a shared room that isn't so large! I've been going in most every day and have sorted through all her clothes. Moved all but what she will take with her to my house. I told her I was taking winter clothing to my house to give her more room.

But, now the time has come to put things in high gear to prepare for the move and I'm afraid it's going to upset her. The day we move her, one of my friends will be with her. It will be the day she normally goes to get her hair done, which will give us several hours to get the few pieces of furniture that will be going with her moved.

I will be at the memory care place to get everything set up and the plan is to have her "side" of the room ready and then we'll drive her over that afternoon.

This is making me a nervous wreck. How did some of you handle moving things? What did you tell your loved one? How did you take care of yourself?

The place we are moving to offers group counseling for family members. They also have a Family Council that meets monthly. I plan to take advantage of both of these.

If you pray, please say a prayer for my family (me, hubby and mom) as we work through this next week.

Thank you!

Mot
 

Pear trees

Registered User
Jan 25, 2015
441
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No, it is not terrible to ask God to release her from this earth! I, and many others here, pray and wish every day that their parent would pass peacefully in their sleep and be spared the inginity of dementia decline.
All you can do is keep doing a brilliant job in finding her a safe and caring place to live, and being the caring daughter that you obviously are. It will be stressful and hard but you are doing it because you care. Try to find a bit of time for yourself and your family, and take counselling if offered.
 

CeliaThePoet

Registered User
Dec 7, 2013
615
0
Buffalo, NY, USA
There is no question that The Move is stressful for every single one of you. It is so hard, because it comes at a time when you know there is no other option, but often it takes a long, long while for things to settle (people say at least 3 months, and I'd agree). Try to stay calm, get as much rest and self-care as you can. Perhaps consider not hooking up the phone right away if she is still calling frequently.

For me, the week my mother went into assisted living was one of the most stressful on this journey, up there with emergency surgery for a strangulated hernia and subsequent 11 days of delirium, and two geri-psych stays for suicide attempts. She tried to escape the very first night and had a Wanderguard attached. I cleared the apartment where she'd lived for ten years in three days. I was utterly exhausted, and she called, called, called.

I have the same wish as your wish. Let's wish it for each other!

I very much hope things go very smoothly. I'll be thinking of you!
 

mot

Registered User
May 4, 2016
73
0
USA
Oh Celia, I cannot begin to imagine what you have been through! Learning of someone else's nightmare helps put mine in perspective! I don't wish your experience on my worst enemy! My heart hurt to read about what you went through. I hope it is better.

Like you, my mom has been in her apartment for 9+ years. Even though I have already cleared out clothing, we will also have 3 days to get out!!!! Plus, we have to move a few pieces of furniture and other belongings that will go with her. The importance of having her space ready for her to walk in has been stressed to me over and over. I got it! And, am trying my best to have it look and feel as close to her apartment as I can. It's agonizing - but not nearly as tough as what you went through!

I talked to my mom today about moving. She listened intently and asked a few questions. Her only real comments were that she hoped she liked it there, and she wondered if it was as nice as where she now lives.

Somehow, someway, I am going to walk through this.
 

CeliaThePoet

Registered User
Dec 7, 2013
615
0
Buffalo, NY, USA
Thank you. This week it is three years since she went into assisted living.

May I suggest talking as little about it as you can manage. We feel we must inform them, but more often I find they are happier when led along, if they trust you have a plan and are taking care of things. My mother did accuse me of putting her in prison and had no interest in being safe, so there was no discussion which could address that. Chocolate, walks on the grounds, activities, not talk work best now.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
Hi mot
just to wish you all well with the move
I agree with CeliaW, you've talked with her and effectively gained her permission and been given her approval of her current place ie
I talked to my mom today about moving. She listened intently and asked a few questions. Her only real comments were that she hoped she liked it there, and she wondered if it was as nice as where she now lives.
so now no more discussion, just be positive about her new home and allow her to settle
when my dad moved into his care home, every time I visited I complimented as much as I could to make him see that I was happy for him to be there eg what a lovely view, isn't the lounge comfortable, aren't the staff helpful, what wonderful lunches you have here (and you can add, how lovely to have a roommate) .... within days all the staff knew dad's name and greeted him every time they encountered him, so that really helped as he felt he was among people who knew him (though he couldn't work out from where!) - and I wholly agree about the phone; don't make it easy for her to form a habit of calling you - the staff can be a buffer between you both; you can let them know that you are available in given circumstances, but let them distract her otherwise
when you leave for the first few times, maybe have a distraction ready eg leave just as a meal is being served or an activity is beginning or ask a carer to guide her to the lounge for a drink and a treat ... so that you can slip away and leave her with company
then, have a treat ready for yourself - you will need a bit of distraction too, so maybe don't go straight home
all the best :)
 

mot

Registered User
May 4, 2016
73
0
USA
Hello Shedrech, Thank you so much for your advice! I will do exactly as you have suggested! A brilliant tip to leave at lunch time or activity time!!!! Just trying to hold on to my sanity while getting the space ready for her. Wish it could be done without so many back and forth trips. It's sort of like setting up a room in college. Everything is shared, but you each do have private space. Some of her things are working and some not.

At first, mom won't have a roommate. This will give them time to work with her and for her to get adjusted. The director has 3 ladies to choose from and is looking at all involved to try to make sure they compliment each other and are compatible. That is huge for me!

My heart aches for families and especially the caregivers who have a loved one impacted by dementia or alzheimer's. It can rip you apart and leave you in shreds. I've been reading posts all morning and am so grateful for this forum. It leaves me with hope and a sense of direction.

Hope you have a wonderful day! I'm off to try to come up with some storage solutions for mom's bathroom.

Thank you again for your words of wisdom!
 

mot

Registered User
May 4, 2016
73
0
USA
Move Didn't Go Well

Today we moved mom to Memory Care. My OH and I worked all morning getting her things together. She got her hair done, went to lunch and we set off with her things and a helper to get things unloaded.

Got her space all set up and it looked comfy and nice. At least to me. By the time I got through with all the paperwork, it was around 3 when we picked mom up and took her to the new place.

At first she seemed okay. Even commented on how nice it was. BUT, when she saw her bed, she balked!!!!! Wanted to go back and did NOT want to sleep in that bed.

NOTE: Her bed is a queen size and it just would not fit with two people sharing a room! We took my youngest daughter's twin bed and set it up for her.

I told her the bed was her sweet granddaughter's and how thrilled she was that her Grandmother would be sleeping in her bed. I asked her to think about how much she loved her and that she would be sleeping right where her little sweetheart had slept.

That seemed to help some, but she kept clinging to me and wanted to leave! She didn't want to have anything to do with the place.

They finally asked me to step in the office for a moment. When I went in, we talked for a few moments about the transition and told me it would take a minimum of 72 hours for her to begin the adjustment. My OH walked in and said she was shouting out my name calling for me. The reality of leaving her in a strange place just hit me and I honestly did not feel they were giving her the attention a new resident needed.

We continued to talk and they warned me there were going to be changes and that they were hoping they would be positive changes. I was asked not to return until Sunday!!!

I just broke down sobbing. Traitor, that's what I feel like!!!

The director gave me a hug and asked if she could send me text reports of how mom was doing. So, I've gotten 2 reports. One with a photo of mom eating dinner and she said mom was eating ice cream. She LOVES ice cream, so that's good.

The 2nd report was to tell me that mom had her pajamas on and was in bed around 7:30. (That's really good, as she usually tries to get in bed mid afternoon!!)

I didn't even get to put out her soap and towels for washing her hands! This was not a good day. Am hopeful that when I see her on Sunday that I will get a smile!

Canary - thanks for the tip on the see through containers. I picked up a few from a local home goods store.
 

Katrine

Registered User
Jan 20, 2011
2,837
0
England
You describe a very similar reaction from your mom to my MIL's reaction when it first came time for family to depart from the CH. Of course she panicked at that point. The staff are used to this. They gently removed you to the office, so that you were not in your mom's view. They reassured you and explained what should happen next. You received regular updates including pictures, which I think is so thoughtful.

Please do not think that the move went badly. It sounds to me as if the move went as well as could be expected. You did your very best to provide mom with a comfortable environment and were upbeat and positive.

Your mom needs time to adjust to her new surroundings, and to the people there. This is one of the reasons why you are asked to stay away for a few days to let her settle. If she sees you daily she will not transfer any of her trust or attachments to her carers, which she needs to do. Be prepared to cope with "thank God you've come to take me home, now let's go" or similar, for some while. Seeing family members is the trigger for this. My MIL doesn't say it any more but she's been settled in her CH for nearly 3 years now.

Memory Care seems to be a good place where your mom's needs will be understood. How lovely of the director to give you a hug. It sounds as if they also understand your feelings, and wish for everything to be just right for your dear mom.
 

canary

Registered User
Feb 25, 2014
25,081
0
South coast
You are not a traitor - you have done your very best for your mum and it sounds like the home understands dementia. Not visiting for a few days is actually good advice, though it seems counter-intuitive. When you visit, dont let your apprehension show, staple a bright smile to your face, and take something to try and distract her. Mum loves having a manicure and I take a bowl, cleansers, a towel, file and nail polish if I think its going to be a difficult visit. Arrange an exit strategy in case it all goes wrong. I would suggest leaving your coat in the staff office and if she gets very upset tell her you need to go to the loo and just leave. Do not cry in front of her. You can cry when you get outside and then go and give yourself a treat. Remind yourself that she is safe, warm and looked after and she has what she needs, even if its not what she wants.
((((hugs)))))
 

CeliaThePoet

Registered User
Dec 7, 2013
615
0
Buffalo, NY, USA
Mot, glad you posed, as I was wondering how it went. (I'm distracted by a new crisis with mom, rectal prolapse! :eek:) I agree with Katrine that this sounds pretty normal. When you visit Sunday, bring a treat (edible) to have a great thing to focus on as a start, and have an exit plan. Also, be gentle with yourself. It is going to take a little time, remember.
 

mot

Registered User
May 4, 2016
73
0
USA
thank you, thank you! Celia, Katrine and Canary!!!! Such words of wisdom and I'm soaking them up!!!

First off, I can't imagine dealing with a rectal prolapse!!! How in the world is this treated!!! I'm saying prayers for you and your mom right now!!!! Hope that works out with a solution that isn't too painful or involved!!

All of your comments are spot on!! I will take her a vanilla shake on Sunday. She loves them and it will be a special treat! Will be as prepared and I can be for the whatevers in the world of dementia, and if I feel the tears coming, I will say I have too find the loo and leave.

Canary, when you said, "Remind yourself that she is safe, warm and looked after and she has what she needs, even if its not what she wants." Well, that hit a home run in my heart!!!

I DO understand she has to adjust to them and developing trust comes with time.

My OH deserves a HUGE reward as he has taken charge of moving the rest of her furniture and things. We packed yesterday, and finished up today. The movers come tomorrow and we are ready.

Just broke down leaving her apartment tonight. A lifetime of memories are in those boxes. Time stops for no one....no place....or any thing!!!! Life goes on and I must too. It will take time.

Thank you all again. I will update after my visit on Sunday. Hugs to all of you!
 

mot

Registered User
May 4, 2016
73
0
USA
Visit With Mom

Sunday's visit:

Mom was angry. Told me if we didn't want her living with us we needed to find another place because that one was horrible. Said it was outdated and dreary. (It's brand new, squeaky clean and decorated nicely.) She said the food was nothing special and the carers didn't want to do anything.

I told her their staff was expertly trained to deal with people with memory problems. She looked at me and said they could not do anything about her mind. That totally surprised me. When all reasoning skills seem absent, she comes back with a comment like that!!! I told her no, they could not do anything about her mind, but they could meet her needs better here.

Someone had written my name and phone number down for her and she picked up the remote control for the tv and said it didn't work as she had tried calling me all morning. Sad.

I found a house shoe(not hers) and someone else's pants in her room - which I am told is common in Memory Care Communities. I hate it!!!

It IS different, I must admit - but I have to believe and hold on to the fact that she is where her needs can be best met.

This is just as new to me as her and I don't like it either. (The situation, not the place)
 

canary

Registered User
Feb 25, 2014
25,081
0
South coast
No, nobody likes it to start with. It will take both of you some time to adjust.
I now find that the other residents and their relatives are like an extended family. To start with it all seems terribly alien and I was apprehensive. Now I chatter to them too and know their fixations and foibles. Possessions do get distributed around the home and, TBH, mum is as bad as the rest! I go through mums wardrobe and drawers regularly to send dirty clothes that she has put back and other peoples clothes back to the laundry. Its no big deal. Just make sure that everything that she owns is marked with her name.
Once you have got used to it it will be fine.
(((hugs)))
 

mot

Registered User
May 4, 2016
73
0
USA
Am I Doing Something Wrong?

Canary, I love your user name and the quote, "Learning to sing in a cage."

Am hopeful that I will feel the same as you after some time. I put small photos on a shelf in her tv armoir and am wondering if that was wise. Yikes! After reading your post, I need to make up labels and put on everything. I DO have all her clothing and linens marked.

Last night, there was a Holiday Celebration at her memory care place. Families were there and we were served great food. I enjoyed being with mom and observing other residents with their families.

However, when it was time to go, my OH and I told mom we had to leave and would walk her to her room. We're walking down the hall and she's looking for her room number. She finds it, and says "Look, my name is on the wall" and she just keeps on walking. Called her back and said mom, this is your room, we're going in here. She was shocked.

We enter and sit for a bit before leaving, but when we start to go, she gets up and says she's ready and heads towards the door. It was horrible!

Tried to explain that she was staying and we were leaving. She got angry and started crying.

We finally just left and got the director, who told me to go that they "had" this.

Am I doing something wrong? Is there a better way to leave? There HAS to be a way to handle this without causing her (and me) so much distress!!!!

Thanks,

Mot
 

canary

Registered User
Feb 25, 2014
25,081
0
South coast
I find it best to time my visits so that I leave when mum is distracted by a meal, activity or tea and biscuits. If she gets upset when you are leaving (mum used to think she was going with me too) then simply dont tell her that you are going. It sounds heartless, but mum never worked out that I just disappeared (I checked with the carers) and it saved a lot of upset. I used to tell her that I was going to the loo, or that I had to speak to the manageress. You could enlist the help of the staff - arrange beforehand for someone to take her aside for something "important", or to go for a meal etc and once she is out of eye contact, just go.
 

CeliaThePoet

Registered User
Dec 7, 2013
615
0
Buffalo, NY, USA
I'm sorry it is so difficult. Steel yourself. Either this is going to get better (tho probably not immediately) and/or you are going to get better at coping. You will. Have you called later to ask if she settled after you'd gone? Often, it is the presence of the loved one which evokes the upset, but when you are not there, they are ok.

My mother's situation is significantly worse, and we are seeing a surgeon tomorrow. I expect surgery will follow rapidly. I guess I hope so, as there seems no alternative. I also expect a horror show of delirium after. Advice is to be there as much as possible, which will be pure torture.
 

mot

Registered User
May 4, 2016
73
0
USA
To Celia

Celia, am so sorry! I can't image having that procedure done. Will she have to wear a bag? (forget what that's called) I am praying for you and your mom as I type. I have prayed that you would have peace and that the hands of the physicians would be divinely guided. Hopeful the recovery process will be better than you think!! Sending hugs to you!!!