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I have a 94yr old mom who has dementia/cognitive decline. I noticed little things began to get so difficult, even with the help of hired caregivers. I made the most difficult decision to put her in assisted living. Totally beautiful place with amazing people. Her own suite. Lots of help and activities and possibility of friendships.
I am the only one left. Lost my dad and sibling.
She's been there a few weeks and is not adjusting well. She thinks I hate her and begs me to go home, but it’s unsafe. I’m struggling so much mentally and so is my health. How do I cope? Is this behavior ever going to improve?

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I was a supervisor at an AL facility. I knew man residents who were the life of the party in that place. They had all kinds of friends, went to all the activities, were very pleasant to be around, and little to no complaints.

Until their family showed up or called. They would turn into entirely different people.
The incessant complaining would start, the crying, negativity, misery, and begging to go home. It was like flipping an on/off switch.

Your mother may very well be acclimating very well and even enjoying her new environment. The "performance" may be just that. A performance that is for an audience of one - YOU.

See if you can have someone that your mother doesn't know go to the AL and just observe her. They will be able to give you an honest assessment of how your mother is really doing in AL.

In the meantime, you can do two things. Stop visiting her or limit the visits for a while and reduce how often you call her. Then see hoe she acclimates

Or, continue calling and visiting as you do but set some boundaries. When she starts with the complaining and crying and begging to go home tell her that you will leave if your time together is just going to be begging to go home, crying, and complaining. Then get up and leave.

Your mother is never going to live outside of an AL or managed care facility for the rest of her life. So she will have to acclimate to it. You can help her with that by doing the things I've suggested here.

As for the guilt. You're doing that to youself. It's not because you have any reason to feel guilty or that you did anything wrong. You don't and you didn't. Your mother could not live at home anymore so you found her a beautiful AL where her care needs are being met and she can have a decent quality of life.

What better could you have done for her? No one has a time machine they can put an elder in that makes the young again and returns them to a period of their life that was good. You can't do that. No one can.

If you choose to beat yourself up with guilt for doing what's right, that's on you. Maybe a therapist can help you.
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Was she happy at home? My mom was not happy, period - and when I realized that … it helped me some. She was the most pleasant she’s ever been on a call a few minutes ago. She moved into AL at the end of September. She still doesn’t leave her room and has room service delivered three times a day … but she sounded upbeat. If your mom wasn’t happy at home either, then maybe your expectations are too high. If she was, I am sorry you are both going through this. My dad adjusted to memory care fairly easily. But he’s an easy going person and likes everybody / everybody likes him … makes a world of difference.

She needs to make a friend. A friend changes everything. Can you ask the people at the AL to assist and maybe help her find somebody she can connect with and share meals with? You can help that too by joining her in the dining room for meals and engaging others to try and make connections for her.
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I went through something similar with a family member. It’s not easy.
Just remember that you are doing the right thing. It will take her some time to adjust, and you as well. This is a new reality for both of you. I once asked a nurse how long it would take. She said in several months it would get easier. Just make sure that they don’t try to move her again to another room. That could be unsettling all over. Your Mom will eventually adapt as much as she can. Try not to worry so much and you should not call her every day in the beginning. She needs to make new connections with caregivers and others who live there. She definitely will not get lonely with all the people coming in and out every day. I would open an account so that you can order her favorite take out food once a week, and have someone put on her favorite tv shows/music each day. I would talk to their activities director to see if they could get her involved in something she may like. She will most likely always say, I want to go home. That’s very common and expected. Eventually, Her long term memory may be thinking of a different home. She probably will not remember what happened the day before as well. When you go to see her try to stay upbeat and positive. Bring her candy or something good to eat. Take her for a stroll in the wheelchair outside to get some fresh air and sun. It will help her mood. When she becomes better adjusted and knows that where she is now is her home, take her out for lunch. I would never take her back home with you. If she starts asking about family members that have passed away, just tell her that they couldn’t make it today. She will not remember asking you. It will probably be the same thing over and over each time you go to see her. Don’t get discouraged. Try and except that you have already lost a part of her. It will be different. Take care of you now. Get rest, eat well, enjoy your friends, church, reading, movies, and getting out of town for a bit. A change of scenery will really help you. Go on a tour of a place that you have always wanted to go. Your Mom is in good hands. The stronger and more connected your life is outside of your relationship with her, the better you will be able to deal with your emotions when you see her. Know that it will be a continuous transition. Sending hugs!
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Guilt is a nasty emotion. I would go so far as to say that we've ALL felt it in differeing circumstances and situations as we 'help' and are 'responsible' loving care providers.

Combatting exhaustion/fatigue compounds or brings to light those G-U-I-L-T feelings. How did I deal with them?

While our situations are (were) different, I did the best I could in the moment.
Perhaps along the way, I realized I was doing the best possible job I could in a challenging situation.

In thinking about this vicious emotion (GUILT), I believe self-care needs to be a major consideration. Especially when most of us are giving, giving, giving with no or little renewal time.

What I feel at this moment is that I would like to wave a magic wand and take away your feelings of g-u-i-l-t and replace with ...

"I am loving my mother and doing the best loving gesture I can possibly do at this time in her life ... if it was possible to take away her angst and heartache, I would."

Give yourself a huge hug and acknowledgement for what you are doing.
Sometimes pain, hurt, discomfort (or always) are part of transitions of life and nearing the finality of life, it gets harder and harder. Unfortunately, these life changes are a part of life and, like grief (from my current experience) cannot be avoided or pushed aside. They are there and it hurts.

Perhaps the best we here can do is say "we understand" ... "we are with you" ... "you are not alone." ... And, you are an extraordinary daughter.

Gena / Touch Matters
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BurntCaregiver Aug 2023
I don't feel guilty about anything unless I've actually done something wrong.

Doing what's best for a person is love and that's nothing to feel guilty about.
What a person needs is often different than what they think they want. They may even hate you for it, but you won't hate yourself if you do the right thing.

I've dealt with tears, hysterics, and manipulation for years.
I don't allow guilt-tripping and no one else should either.
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Some people on here are saying don't visit but I say the opposite! I am a senior and if my daughter put me in a home I would hate for her to stay away and not visit.
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TouchMatters Jul 2023
Yes, your feelings are understood. The 'recommendation' from nursing homes / facilities is based on years of experience in 'helping' a person adjust to a new environment. It feels harsh and even mean (spirited) to even suggest such a strategy.

I believe it is not a black or white decision. The shades of gray need to be addressed - those grays being the personality, disability, cognitive functioning, the relationships of the loved one being moved (with the family).

I can't imagine ANY older person moving into an unknown environment saying to their family (member) 'don't come to see me for 2-3-4 weeks, while I adjust here." No, of course not. We all want what is familiar and esp our loved ones near to us, to protect and support us - when we feel fear and discomfort.

I would recommend that when a family (member(s)) is in this situation to read / research what the psychologists / therapists say is 'helpful' - and why.

Consider this below (from this website:

https://www.thememorycenter.com/how-long-should-you-wait-before-visiting-your-loved-one-in-memory-care/)

"Let Your Loved One & Memory Care Staff Lead The Way

In most cases, your loved one’s level of comfort or agitation will determine how soon or how often you should visit.

Also, trained memory center staff have wonderful insight into whether your presence seems to soothe or unsettle their new resident, or what times of day seem best for him/her (which may vary in the new setting from what you were used to at home).

Feel free to check in with the staff to learn more about how your visits affect your spouse, parent or relative.

At first, more may be more

Often, visits from you and other loving, familiar faces help to ease the transition from home or an assisted living facility into a memory care community. In the beginning, these visits may need to be more regular to help the new resident settle in.

Regular visits from the ones they love assure new residents they are not being forgotten or abandoned. Your presence proves you meant it when you said, “we’ll visit you often,” and that can provide peace of mind.

Then again, sometimes less-is-more

There are exceptions, however, to the above. Some new residents have a harder time settling into their new home and need more time before they are ready for a visit.

When well-meaning visits immediately after a move cause more homesickness instead of less; or more agitation than calm, or emotional goodbyes, ask the staff if you should consider waiting before your next visit. This can lead to emotional and traumatic goodbyes.

If it seems early visits are detrimental to the resident’s ability to settle in, administration or staff will recommend a modified visiting schedule. It may be that remaining absent for a full week or two is enough for your loved one to “re-anchor,” after which regular visits are better appreciated.
NOTE: It can be heartbreaking if your loved one falls into the category of “less is more” on post-transition visits. Let’s be honest, while regular visits from loved ones can help your loved one with the change, those visits are just as likely to help you transition into a new life.

If it turns out you need to take a visiting break in order to facilitate the new resident’s transition, consider this your opportunity to adjust to your new life as yourself,rather than a full-time caregiver."

Gena / Touch Matters
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Justalady: You both need some time to adjust to this new reality. It is so difficult, but please know that you've done the right thing.
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I have been told by elder / assisted living community personnel that it takes time for a new person to adjust - a few weeks. Often they ask that family stay away to give their loved one time to adjust without the emotional 'pull' associated with seeing / hearing from family. That is a personal - tough call. I don't think I'd stay away... although I do see elders adjusting with time. It could be a combination of 1) forgetting; 2) feeling comfortable with new staff/bonding/trusting; 3) medication adjustments; 4) resolving that this is the way it is and somewhat adapting/giving up the 'fight' -

She will likely continue to 'beg' you to take her home. This is the most difficult part and perhaps the most difficult aspect of caring for / relating to your mom to date. It is gut wrenching difficult, painful. It hurts to your core. Still, it is a LOVING DECISION you've made for her safety and well-being. Keep that in mind when you start to feel the sadness, guilt - that awful 'in the pit of your stomach' and heart-ache.

"Try" not to argue with her.
Focus on letting her know you understand how she feels. While it may not seem like much, her knowing you HEAR and UNDERSTAND how she feels is so very important now, and perhaps all you can really do = offer emotional re-assurance by listening (reflective listening = reflect back what she says), and make physical connection as is supportive (holding her hand, giving her a gentle massage), smile, be aware of your voice/tone.

Do let her know she is deeply loved and that you are there for her 110%.

While she is incredibly fortunate to be in 'her own suite' and likely a top-of-the-line facility (most people cannot afford this), she probably doesn't relate to the 'exterior' stuff / environment. So many (as my companion/friend of 20+ years) ended up in a nursing home. Luckily, I live(d) two blocks away and was able to keep on eye on things ... several times a week - and be his voice in an institution where he had no voice (as the others there also do not).

I'm off track a bit - know that you are doing an exceptional job - caring for your mom as you are. How many of us here would LOVE to have a daughter like YOU. Perhaps thousands.

It hurts. Be with the feelings. Do not try to push them away, be present with them. Otherwise, they will keep lurking in the background - perhaps for many years. In other words, if we do not allow our feelings to 'be' and 'release' and 'surface' as they naturally want and are intended to do, they stay there until you do allow them to come up and out. It is a way of self-respect and listening to the you inside.

We are here for you. Know that and come back as often as you need to.

Gena / Touch Matters.
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The real test will be in less then 4 months
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You done wonders for her well being. Luckily you had the funds to procure her with a professional setting at that level. The part of the guilt should immediately be replaced by elation, as you have your one and only in a safe environment, which is to her benefit, and yours as well. Continuous visiting, nice presents might improve the feelings on both parties. An old saying: what do they do show their love? You caring, executing a transfer to a safe, apparently very nice place, is a sound decision. Good Move!
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TouchMatters Jul 2023
The 'shoulds' do not deal with how a person actually feels and when I read this - it is a red flag. A person feels as they feel - and getting through feelings is a process, including contemplation, awareness, ability to shift emotionally and psychologically, to feel/be compassionate, to forgive (self and other[s]).

I do understand your intention though.

Yes, this daughter is doing a magnificent job caring for her loved one.
How fortunate her mother is - having a daughter this caring, with financial means to secure a safe, beautiful home for her mom.
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Just,

Transitional times are the absolute worst! You are adjusting to the situation, just as much as your mom is. You both need time to acclimate to this new reality.

When the dust settles, your mom will most likely be accepting of her new surroundings and you will be comforted by the fact that you made the most responsible decision.

Your mom knows deep down that you didn’t abandon her and you know it too.

When my mom entered her ‘end of life’ care home, she realized that she was in the best place for her remaining time on this earth and that she would be well cared for.

Give your mom some time. Let her honor her feelings now, hopefully she’ll come around and she will be grateful that you cared enough to want the best for her.

Wishing you peace as you continue to oversee your mother’s care.
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anonymous1732518 Jul 2023
Good luck with the OPs mom in less then 4 months
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I have battled guilt. I placed my mom in May of 2022 and she passed in November. I did bring her to my home the last few days of her life. I have tortured myself over the decision and if my placing made her deteriorate faster. She was not happy (did adjust some) but my health, and my husbands health, were at risk. My mom would have really been lost had something happened to me. I lost my hearing (recovered it) and my husband was in the hospital twice in 3 months with heart issues.

I am learning, through counseling, that I simply will never know what would have happened had she stayed in my home. She could have fallen, something much more severe could have taken place and she may have had the same exact outcome. Choosing to keep her at home does not automatically mean an easier path.

This disease has more victims than just the afflicted. It touches everyone around and leaves so much heartache and second guessing.

But…I did the best I could do with the information I had at the time. I did not have the advantage of the knowledge I have now. My life has recovered, my health is better and my marriage is solid.

Making yourself a priority seems counter intuitive but YOU are worth it. You need to balance your mom’s needs with your own. Give it time.
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Your mother might or might not ever "adjust" to AL, if that means being happy about being there. You may be the one who needs to accept the reality that you can no longer safely take care of her at home. It does not matter whether it's the physical or the emotional burden that is too great. You cannot manage her care safely at home, so she needs to be where there is more supervision. Do not argue with yourself or your mother about why this is necessary. When you are confident about why AI is necessary, you will feel less guilt.

Until you accept that this is how it needs to be, you will
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Ditto to these helpful comments. We all experience the guilt of placing our loved ones, questioning whether we did the right thing, and feeling the guilt over blames, accusations, etc, etc. After nearly 4 years of this I am finally feeling less guilt & anxiety. Family has helped, staying busy, and taking care of myself are #1 priorities. I’ve tapered off talking to my mom as much, maybe once a week, but if she starts in with her negativity and blaming, the conversation is cut short. She is in good hands, has her own belongings and furnishings, and has wonderful care. For that, I have less guilt. Take care of you and don’t stress so much over your mom. You did the right things! Hugs.
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Please make an appointment with a Geriatric Psychiatrist who can help both of you navigate this part of the journey and who can prescribe medications that will help mom cope and relax.
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It took my mom a little over a month to adjust, with the help of Zoloft. You might want to talk to the doctor about getting her something for anxiety and depression.
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When people with dementia want to go "home" it can be a symbolic statement. They want to go back to a time when they were independent and could do things for themselves. It's a big adjustment to move to an assisted living/memory care facility. Suddenly your mom has to follow someone else's schedule, eat when they are serving foods, do things when they are scheduled, such as take medications, can't go out when she might want to, and has to get to know the many new people around. Also, think about how difficult it must be to get accustomed even to a different path to the bathroom, dining hall, activities, etc. People with dementia also don't always understand the situation clearly. They may think they can do all the things they used to or want to do (my mother was like that, she didn't have understanding about her own limitations). She's in a safe place with skilled staff, especially if she is in a memory care facility. People with dementia go through stages. She'll eventually get used to where she is (and may even forget her old home). Remember that her condition is likely to decline over time. Be realistic about what you can do for her. Keep visiting as much as you can, tell her you love her constantly. Keep saying that she is in a safe place where people will care for her. When you visit, make the visits quality time focussed on her. All the best to you both.
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Family, friends and support groups. Talk to someone about your feelings. My friends and family and community resources have been very helpful. I try to reach out not too often, but they are always willing to listen.

I am the only child, my mother is in end of life situation, and I am left with all the decisions. Some days I am ok, and others I fall apart. I talk to my friends, my family and everyone is very supportive, sometimes they have some information to share that might be helpful, sometimes they can share that they have gone through this with their close friends or family, but mostly they listen and tell me that I am doing ok.
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Consider getting a PCW and SHC worker.
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No guilt. You did what needed to be done. As others have written, she will adjust in time. I’d suggest limit your phone calls and visits. This reminds me what was told to me during college orientation for my daughter.

It will be okay, give it time.
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you are doing all and more that is expected. The person she was when she had her whole brain is grateful to you.
(repeat often)
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What I have learned in my own personal journey is this, you are doing the best you can in the care of and for your loved one, give yourself a break, mentally. Let the guilt go, she will settle in. Its a form of manipulation which they may or may not even know they are doing. My mom lives with me, she will be 101 in Sept, her mental state is good most of the time but I need a break. She is staying with my sister for a few weeks but tells me everyday how homesick she is. Point is be kind to yourself, you deserve it, your doing what is needed for all of you. Kick that guilt to the curb.
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As painful as this is, it is not unusual for this to be experienced.
Be sure that she is receiving social services and pastoral, spiritual support services at her facility. Be sure that you are also getting counseling; your pastor, a community chaplain, another grief counselor of choice etc will be a place to start. Let her have more adjustment time to learn to trust the staff; this may mean that you visit less often and for shorter visit times. Tell her you love her, that you appreciate that the change is grief provoking , but it is for her safety and so that you know that she always has help should you be ill or unable to help. If she is cognitively able to understand and retain conversation, you can also tell her that when you visit, you want to have a loving visit and that if she begins to complain, inflict guilt, you will leave and come another time, as this is not healthy for either of you. If she is not able to cognitively understand this,then do not create more anxiety for yourself nor her by trying to " explain". Her grief associated with change is normal; grief includes anger, denial, bargaining etc etc . Get her social services support and, get yourself 1:1 support for your self care. You did not do anything intentionally
" wrong" so don't feel " guilt". A better word to describe what you are experiencing is " regret"; talk about this with a support counselor... Do self care things to support your physical, emotional, spiritual health.
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Grandma1954 July 29, 2023 9:31 am
Justalady,
A few weeks for someone with dementia is not a long time. Actually for anyone adjusting to a new location, new routine, new people it is not long.
Remember starting a new job, or going to a new school? It takes a while to get to know people and get to know your way around. Not to mention that people still have cliques that they "hang" with. some welcome new comers, some don't. (remember (((shudder))) high school? )
Ask if they have an "Ambassador" a longtime resident that will take them under their wing and help them find activities, or often there is an activities director that can encourage her.

Things will improve give her time.
If you are there all the time trying to keep her company you might want to back off so she has to depend on residents.
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So sorry you are dealing with this situation. This is not a journey any of us wanted to take, but we nevertheless are on this journey dealing with aging and declining loved ones (LO). You might find it helpful to work with a talented therapist to unpack and work through your feelings about this. Guilt is one feeling, and there are a myriad of others: sadness, loss, anger this list is long and deep.

I have found working with a therapist now for 2 years post permanent placement of my mom (86, w/dementia, clinical depression and a host of medical conditions, and bedridden) in a skilled nursing home (SNF) after trying to care for her 24/7 in my home. It was NOT sustainable, much less feasible. And for me (we each have "our story"), doing this care was a challenge as I been in foster care as a kid. Long story you can read it in my profile. Regardless of "our story," when we get to the point of having to put a LO in a facility it is a huge challenge for us, for them, and often for other family members.

Unpacking the feelings and working through it all, is about all one can do to move forward. Replaying it all, revisiting the decisions, getting stuck in guilt is not helpful or healthy for your or your LO.

And as others have said, it takes time (often lots of time) for them to adjust if they can. So giving yourself a break/time off, and NOT visiting or calling daily can help them adjust as well as give you time to start process all of this. My mom has been in her SNF for almost 3 years and still has yet to adjust. I have come to accept that she will unlikely ever adjust so it is what it is.

Hugs and best wishes. Self care is what you need most now. Hope in time, things will get better for you even if the adjusting for you LO is not happening at a faster or wished for pace.
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My 82 yr old Mom says she doesn’t like her MCAL and has nothing to do all day. There are planned activities throughout the day that she participates in, but doesn’t remember, so that’s why she says there’s nothing to do there.
I know she is safe & is fed 3 meals a day plus snacks, which I know she wasn’t remembering to eat while she was home alone and taking walks at all hours of the day & night.
I have to tell myself she is safe there & has 24 hr care to make myself not feel as guilty for having her there. I finally feel like I have part of my life back, which I haven’t felt for the last few years since her Alzheimer’s has progressed.
It’s not easy to see your loved one go through this horrible disease, but you have to take care of yourself (physically & mentally) so you can be there for them.
If you need to take a break and not visit for a few days or week(s), take that needed time.
Your loved one is being taken care of & it’ll give them more time to adjust to there new surroundings and it’ll give them time to start forming new friendships.
You did the right thing for both her & yourself! Keep strong!
God bless!
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I had the exact same issue with my 93 year old mother. Vascular dementia, unsafe to be at home, not eating properly, getting hostile with PCWs, not taking care of the house or herself. We moved her to the best dementia care home in town and she blamed us and I felt extreme guilt. I got a therapist, talked to my GP and got some anti-depressants, and after a few months I realized that I should not feel guilty about something that had to be done for her good and for ours. You should not feel guilty either as this has to be done when a loved one is unsafe at home. Talk to a counsellor, minister, doctor, and/or therapist. Be kind to yourself. Many of us here had to do the same thing and felt the same way, but we recovered. Best wishes.
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Accept that this wonderful place is "different" for her and she really wants familiarity. Help her by arranging her place into some semblance of home: bring in familiar pictures, bed linens (blankets, pillows, etc), familiar room scents, favorite activities... In addition, realize it will take time for this place and their routines to feel like home. Visit often, but make sure that you don't spend your whole day with her - she needs to get used to you being away a bit.

Spend time building new activities and routines into your own life. Find people who nurture you - members of your faith community, join a support group that meets in person, or indulge in a hobby/work/interest that involves others. These friends can help balance the input you are currently getting from your mom.
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You should not feel guilt, she couldn't live alone safely. You placed her somewhere where her needs can be met, and she is in a safe environment. You didn't take away her independence, old age did that and you can't change that.

My 91-year-old mother is in a SNF and is doing better than she was at home. It took a while (around 6 weeks) but once she realized almost everything, she asked for was provided, she could do crafts and socialize, she started to enjoy living there.

As others have mentioned, don't visit for a while and let her adjust. If anything happens, you will get a call.
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You will continue to feel bad if you continue to feel "guilty"
You placed mom in Assisted Living (personally I feel memory Care is a better option as most AL are not locked units) for her own safety.
If you could not care for her safely at home then where she is with 24 hour help if it is needed is safer.

When you visit reassure her that she is safe.
Tell her that you love her.
Make your visits as enjoyable as possible.

If you continue to feel the way you do you might want to talk to a counselor just to get some "independent, neutral" feedback.
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Just, it's only natural to be feeling guilt. If you dropped your mom off and didn't feel a thing? Now that would be unusual. You will adjust. Your mom probably will too. But if she doesn't don't take that as a sign you did something wrong. A 94 year old person isn't going to easily adjust to a big change, good or bad. But give it some time.

Things will improve.
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