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?
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.
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.
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!
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
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.
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
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.
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.
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.
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.
Until you accept that this is how it needs to be, you will
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.
It will be okay, give it time.
(repeat often)
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.
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.
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.
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!
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.
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.
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.
Things will improve.