Writing from a different perspective...will this ever get better?

Think of it this way: If your mother had cancer and needed care, you wouldn't hesitate to send her to a hospital for care.

Why is Alzheimer's any different? It is an illness that needs care. One person shouldn't have to do this job alone. Memory Care will have more than one caregiver to help her around the clock.

Praying for peace.

I think you made the best decision given your situation. It's not easy to deal with the pain but I would suggest sharing your experience with a friend/family member as well as trying your best to focus on other aspects of you life that are more in your control.

I know people can love those people who have physical and mental problems and so if they have to take drastic measures, they are going to be filled with guilt and sadness but that should not be the case. You can still love them even if they are not right under your feet or sitting next to you - and it could be the best for them if you do something. Where in the books of law does it say someone MUST STAY IN A HORRIBLE SITUATION THAT IS CAUSING TREMENDOUS SUFFERING, OF WHATEVER NATURE, AND PUT UP WITH IT AND NOT TRY TO FIX IT OR REMOVE IT? I don't think it is written anywhere. I have a firm belief based on a very hard, heartbreaking life - I learned too many things too late in life and paid the bitter price. When you find yourself in a situation which is harming you - emotionally, physically, whatever, YOU MUST DO SOMETHING TO STOP IT. Taking care of people with severe dementia is a perfect example. Over time, you will be destroyed in many ways and do you deserve that? I don't think so. This is YOUR time to live life and if you don't, god help you as you won't get a second chance. Never feel guilty if you find you must do something you don't want to do but it is the best for everyone involved. In time, the good will outshine the bad parts. Believe me - been there, done that.

You know Mom is getting the best care at this stage. My Dad is in Same living condition. I feel like you do sometimes but Dad doesn't seem to hate it and gets daily care I am not equipped to handle. It just sucks. Prayers for peace of Mind.

At some point you will realize that you did what you have to do—taking care of you. If your mother is in a caring place, and I’m sure you put her in one, she will receive care beyond what you can give her: now, in the next phase, and into the final phase. The roller coaster ride of your emotions will never end because we want to be there 24/7. The truth is, we are mortals. Dementia is awful 😢 so take one day at a time, riding the waves the best you can.

You are not alone and I am in a very similar situation as you, My parents are elderly. My Mother has dementia which has gotten much worse during the past 6 months. My father does not have dementia however he is in his early 90's and not able to care for my mother. I live 3 hours away from my parents and have been driving every week to see them for the past year and have taken on virtually all caretaker responsibilities which include taking them to doctor appointments, grocery shopping, go through their mail, paying their bills, etc. I work full time and recently asked for reduced hours so that I can spend a few days with my parents every week. When I am not at their house, I call them 4 - 5 times during the day to ensure that my mother takes her pills (she has heart disease), they are eating, etc. I too am exhausted - both emotionally and physically. Watching my vibrant and loving Mother fall victim to dementia this past year has been devastating. She is getting to the point where she does not always know who I am when I visit. I am waiting until my parents get fully vaccinated to start bringing professional caregivers into their house. (I have heard too many stories of caregivers transmitting Covid to the people they care for) If my Mother's dementia progresses, I too will have to consider moving her into a Memory Care facility and I am dreading crossing that bridge. I also worry that separating my mother from my father will take an awful toll on my father. Just trying to take things day by day, in getting through this incredibly difficult time. see less

ExhaustedOne: I am so sorry that you're going through such challenging times. You will require respite, even for a day, else you fall faint and ill and are good to no one, e.g. through Visiting Angels, a church program, et al. Prayers sent.

I am sorry that you feel so bad, I personally haven't had that issue, but when my dad had to go into a NH, yes it was awkward and I went every day at first to see how he was doing.  I can't say that I felt bad because he had been home with my mom, but she could no longer care for him mentally and physically.  She also went every day to sit with him but eventually she only went 3 times a week. I am sure it is hard, but IF he is now at a NH, you must have done this due to no longer being able to care for him due to exhaustion.  Don't blame yourself because you did all you could do without causing yourself health issues.  It will take time I am sure but just know that you did all you could to the best of your ability and I am sure that your mom knows you did the best (even if she can't show it)......I pray for your healing of the feelings you are having.

I think you're guilt-tripping yourself a little too much. Relax a bit and get your mind off of this situation entirely for a week or two. Why do you feel bad about getting your mother the care she needs? Old people complain all of the time about too much care, but they certainly can't survive without it. They're too old, they have too many chronic conditions, and their brains are deteriorating. They get embarrassed by a lack of personal space, and their children are easier to trust, but in all seriousness, that's not a reason for you to feel bad. Dementia always gets worse over time. You may not think much about it right now, but my aunt constantly forgot who I was and even called the police on me once, because she thought I was a crook that broke into her house. Not only is this situation awkward, but she had a 9mm handgun that she threatened to get, so it can quickly turn deadly. There's nothing better you could have done with your mother. You might not want to hear that, but she'd have to get used to paid care eventually anyway. You can't keep someone with dementia at home indefinitely. There will always come a point where you need help.

I guess I don't completely understand your situation, since I felt nothing but relief after getting my aunt admitted to an old folk's home. They're nice to her, and she's even made some new friends. I now have more time to work, a lot less stress, more free time, and I've lost weight that I gained while caring for her 24/7. My life has improved in every single way possible, and although she hated it at first, my aunt quickly began to like her new home. Don't beat yourself up over this. It's not your fault that your mother has dementia.

Past 10 years, I've experienced just about everything that's ever discussed here. [Some folks can relate to 1 or a few--I can relate to MANY of our shared concerns.]

I am very sensitive to all stimuli--noise, touch, etc., -- and emotions. I am an 'empath'--which is a true genetic trait. I am hyper aware of and sensitive to all forms of [sometimes perceived] suffering (which I can detect on a micro-mini scale), and literally absorb it as if I were experiencing it. Lots of publications/books available on the subject; my go-to is "An Empath's Survival Guide"--it's very practical and has helped me tremendously. Also, I am blessed to have had a gifted, wise therapist, who's pointed out interesting and fun aspects of being around someone older. Finally, I do take an antidepressant, and have learned to practice meditation. My prayer is for all of us is to accept and have pride in ourselves, that we know that we're genuinely caring folks doing the best we can do for another person. There's no right way to 'do' this. It's 'messy', and I'm overall pretty grateful for the experience, since I've learned that I'm really stronger and less fearful than I thought I was, and that I like myself better than I ever have!

It will get better. There are many good responses and perspective in this thread.

I would only add counseling to the mix. Talking to someone who is trained to help manage strong emotional responses to major life changes can be a great help. There are now online counseling services (I haven't had or heard of any experiences with these).

I hope you can find some moments of peace in your day. It's a lot, so I also hope you can get all the possible support available to you.

I empathize. I did not want to place my husband who has Fronto-temporal dementia and has been unable to speak for the last six years. Suddenly one morning he couldn’t move his lower body and, following an ER visit snd time at rehab, I had no choice. I did find him an AL close by but still felt like I was abandoning him to a strange place.
I am a type 1 diabetic who had frequent low blood sugar reactions throughout our marriage. I remember coming to one night and, after he’d had another night of sleeping interrupted by taking care of me, hearing him say that he would always take care of me. My heart would break every time I thought of those words in our new situation. It helped me greatly to have my brother point out that I am still taking care of him, even though he’s not with me at home. And you are still taking care of your mom. Covid certainly doesn’t help the situation, but hopefully things will return to normal soon. Sending you a big hug.

As someone told me when I was going through the same with my Mom, was that it is stages of grief while they are still alive. That did explain exactly what I was feeling.
It is the letting go that tears at your heart. I am so sorry for your pain. Savor every minute. ❤️

ExhaustedOne,

It does get better!!

After I placed my Aunt in Memory care I was an emotional wreck!! The guilt was overwhelming!!

After several months, my Aunt started to settle into her new home. As she became more settled my feelings of guilt started to ease.

My Aunt is happy where she is!

She still talks about going home, but quickly forgets.

Perhaps some counseling would help you to get over the hump.

Hang in there!!

(((HUGS)))

It is so hard to move a loved one to a memory care facility. I strongly suggest putting a camera in their room for your peace of mind and to ensure that you can adequately be an advocate for her. My mom has been in a facility for over 2 years and a camera has been invaluable. After Covid like everyone else in this position, I was not able to see her but still needed to be her advocate. Being able to see your mom every day and know how she is doing and how she spends her day will ease your worries but also ensure that she is getting the care she needs.

I am afraid that the trick to it getting better can only come from within you but you do have the answer. Remind yourself how you did and continue to do the best possible for your mom. And you have saved yourself so that you can continue to care for your Dad. What more can you possibly do. What you are going through is what I fear, and why I continue to not pursue this answer. Because of the additional stress it would put on me, who sadly discovered what a dangerous physical toll it can place on a person being that I tried to do it all, and do it really well, and wound up in the hospital with major surgery, nearly dying, due to a dissected aorta which is almost always fatal. Now I am focused more on taking care of me. But placing mom who has dementia and whose behaviors are increasingly challenging, complicated by a stubborn father who is better health than all of us put together, would ADD to my stress as I know too much and I would be worried constantly. Her mother was also in a nursing home and although things might be better now, I still am not convinced it would be a better move. Would her absence (we all live together) make my life easier? No doubt. But the cost and expense emotionally would be greater than I can bear. You did your best. You really did. Would some professional help be of comfort? Indulge in that. YOU are still providing the best care you can.

ExhaustedOne.....Caregiver burnout is real. Caregiver guilt is also real. Sometimes seeking in home care or even moving our loved ones to a facility is the best care that we can provide for them. Here are some steps that may help you with the emotions that you are experiencing:
1. Connect with the facility where you have placed your Mom. Build a great relationship with the team that supports her. This may help you not worry so much about the type of care she is receiving. (I know it will not totally alleviate the worry).
2. Join a support group. A support group is a safe place to share the emotions that you are experiencing and just like on this platform, you will find others that have similar experiences.
3. Remember self-care is important as a caregiver. Caregivers tend to put their own health on the back burner as they care for their loved ones. Take this new time to catch up on appointments that you may have missed, or even just to have a quite moment.
4. Utilize technology with the facility to schedule virtual sessions with your Mom. (If the facility is not allowing visitors due to Covid).
5. If you are a spiritual person .........Pray and meditate and ask God to help you with your emotions.
I hope that you find peace about your decision. Your message truly tugged on my heart.

Why are you upset that your dementia mother is in memory care? That is where she should be. Keeping her in your home will eventually greatly harm you and your father and it cannot be fixed. Is that fair to the two of you? Of course not. She is where she is monitored and safe and she will eventually adjust. Tend to your father and you for now and concentrate on the past good memories. Once dementia hits, there is nothing that can fix it - you do what you have to do and in this case you did the only right, decent thing for all involved. Please do NOT feel guilty for doing what had to be done. Instead, consider yourself an angel for having the guts to do the right thing.

Thank you for asking this question and thank all of you who have thoughtful answers and shared. It has been 2 weeks since I took my DH to his new home...an AFH where he is getting better care than I could give him these last couple of months. I did not experience the relief expected and reached out to my caregivers support group for words of wisdom and they came through!
The day before taking him to the AFH, I wrote a card to his new caregivers....thanking them for taking care of my DH ...And(looking back, this was probably a very healing action for me) I wrote that I was retiring from my job of 24/7 caregiver, but my new position is ' support staff' to them. I have yet to meet most of them and have not been able to visit with him( a short phone call was a setback for him), but I know in my heart he is getting the care that mortal me could no longer give him. I could have done it for 8 hours/day, but could not see the 'finish line'(easing of covid) to pace myself.
The phrase of giving my heart time to catch up with my head has been added to my words of wisdom. What treasures are in your posts!
I would love to know how to access the article regarding the ' tsunami of emotions'.

Yes, it gets better! My mother has been in MC for almost a year. I see her once a week (COVID restriction). I can now enjoy my time with her, and when the center opens up completely again, I'll eat lunch with her and hopefully be able to participate in a few of their activities, and not worry about her constant care. I was a "caregiver," and not her daughter during the time I took care of her. Now, I'm her daughter again and I can make her laugh, and I enjoy her again, even the times that she doesn't remember who I am. I've gone from being a stressed out caregiver, scared she was going to get injured because I wasn't doing the care giving tasks well, to seeing her happy, well cared for, dancing and singing with others. She has always been social, and she was becoming isolated otherwise. Take care of you, and see your Mom when you can. Remember that she may ask to "go home," that's normal. You have your mother's best interests at heart by making sure she is safe, cared for, and in a place where professionals know what she needs. My father didn't have dementia and he tried to take care of her, and his health deteriorated quickly. I tried to help both of them, but it wasn't what was best for them, or me. Dad has since passed away, and Mom is in MC, and to tell you the truth she has embraced it. She has bad days, but she had those with me too. It may take a couple of months, but when you have reassured yourself that she is well taken care of, you will start to feel a sense of relief and then realize you have done the best for her, and you. God bless, I promise, it does get better.

I wanted to ask, how is your mom actually doing in her new home?

Of course adjustments are hard. But is she doing ok- sleeping, eating, moments of peace?

I’m thinking if we disassociate ourselves a bit from the parent’s actual experience- and honestly ask, are THEY ok- maybe we can gain perspective.

hugs

YES! I've been through this and continue to go through this. I put my mom in MC in August. This was after I had taken care of her for 3 years after my dad passed. They were married for 60 years, and she just became lost. At first they said she had complicated grief that turned to dementia. Now they say vascular demetia. Who knows...However, it was so hard letting her go and trusting the staff at MC. I did my homework and knew she was, and is, in a good facility. This didn't make things any easier. This forum helped me because they helped me realize this was grief I was feeling, and gobs of guilt. I was grieving my mom, missing my mom, and feeling guilty. Now it's February, I still battle with these emotions. I feel the weight of it on me everyday. But I've learned to live with it. How? After time, the staff at her facility have proven themselves to care and be trustworthy. Are they perfect? No, but neither was I in taking care of my mom. In fact, she gained weight, laughs more, helps with the other residents, sings, plays games, does crafts, and so much more. I was not enough for her. I was wearing myself down, it was becoming unsafe for my mom, and was reaping havoc on my family. Just like they all say, now I can focus on just being her daughter. She has a nice apartment and I make sure she has her favorite drinks and snacks. We make her cards, give her flowers, magazines, photo books, call her twice a day, and I visit her in the visitation room they made twice a week. I found that my mom was still just as sad when she was living with me. She misses my dad and that will never go away until they are reunited in Heaven. I learned that I can't fix her. I can't be her happiness guru. She didn't like her youngest child (me) telling her what to do, this way she still has her independence. There's a caring staff for her 24/7 to redirect her, comfort her, challenge her, and have become her friends. She has her sad, confused moments still, but she has more happy moments than when she was living with me. She gets her 2nd vaccine on the 16th of Feb, my dad's bday, and I really hope some of the restrictions will be lifted here in Illinois. That stupid South African strain could ruin everything. I pray it don't. It will be a wonderful time to finally be able to go into her apartment and watch TV with her, make sure everything is in it's place, and take her out to lunch. Then it will be the best of both worlds. All this to say, it sucks, and I won't lie and say it becomes so much better...because I still struggle with these feelings too. However, time and time again, I see how much she is thriving for the most part. They have the New 2 You computer program and one time my mom face timed and I got to see first hand how they make sure they sing kareoke, laugh at funny videos, play bingo, and intentially doing all the activities that fight the yuck that comes with dementia. If mom was living with me, she'd just watch TV and drive all of us nuts with her appointments she needs to go to(which she didn't have any), looking for her car, thinking we stole the car, looking or her baby (which is me), and wondering where my dad is at. Now her day is filled with activities and some purpose. The staff is really good and letting her think she's part of the staff. This makes her feel wanted and useful. Your grief will ease, but it might always be with you everyday. It's like a cloud that follows you. You'll still 2nd guess yourself, but then you'll have to talk yourself through it all again and again. Do give it a good month.

I had the same experience with my mother and I decided that the pain was worse when she was relocated to a nursing home than having her with me. My decision took 5 years till she died in my arms and at home. Never regretted. It was hard, but the sacrifice was worded.

AlvaDeer, well said. Hope you find peace with your decision. It is such a difficult journey caring for a loved one adding to stress, sleepless nights and own health issues. Sometimes we don't take care of ourselves as we should. Home caregiving is definately not for everyone. I am fortunate I have help from my brother and niece to help with my 98 year old mother. I could never do it alone now. I did it for 8 years alone but now it would be extremely dangerous and difficult. It would be heartbroken too I ever had to put my mom in a facility, but for the safety of her I would if I absolutely had to. My two family members that help me need lots of supervision and they do their best to their ability and I am grateful but realistic. They could never do it long term on their own. I have a plan and told them this. If something ever happed to me please put mom in a very good facility and visit her frequently and it would be absolutely in her best interest. I was told by my niece she would stay in the facility with my mom and help take care of her if they agreed to it. My brother would visit every day, I do not even need to ask him. I feel for you I really do, it must be so difficult to make that decision. You need to think if you get sick, who will take over? I send my thoughts and prayers to you and your dear mom. Wishing you peace.

It's only been a week! We need time to adjust to changes.

Posts from others who kept journals, who could then look back when they were second-guessing their decisions were helpful. If you didn't keep a journal, you DO have your memories about how it was when she was still under your exclusive care. We may tend to romanticize the past and try to wash away the negative times, but you DO need to remember those.

There had to be good reason(s) for you to make the decision to move her. It will be hard, but hopefully soon with the vaccine being distributed there will be more opportunity to visit with your mom. Once that happens, you may be able to turn that corner and leave the doubts behind. Being able to visit with her, hopefully enjoyable visits without the drudge work of wiping, cleaning, bathing, etc, just the FUN parts of being together, might change your perspective. Once we reach our limit in ability to do a job, when it becomes beyond our ability to perform the necessities, it is time to seek help.

Perhaps now that you have more "time" on your hands, you feel like a failure. You are NOT. You've given it your all, perhaps MORE than that, and realized it is time to get help. Very often they will recommend not visiting for at least a week, sometimes two weeks, to allow adjustment. Most likely visits aren't allowed at the moment, which adds to your angst, but this will pass. Since the focus is on vaccines for the more vulnerable and care-givers, there should be some protection very soon for all of them. If you are up there, like some of us, you might be in the next group who are eligible. It will still take a few weeks for the vaccines to work on getting your body protected, but once you and they have been treated, you should be able to visit.

Once you can visit again, revel in how nice it is to sit and enjoy each other. Could you really enjoy time with your mother, when juggling all her care AND whatever you need to do on top of that? Now the care-giving part is removed and you WILL be able to share some good times with her.

I'm sorry for how this affects you, who knew how hard it could be? I don't know if it ever gets better, but it changes. You may not be able to to fix things or make a situation better, we don't have the ability to change other's but we can change how we deal with our own needs and problems.

Do the best you can and with care and compassion for your loved ones and yourself. When they are gone you can look back and know that you did the best you could.

Grief is legitiment
. You have been seeing the loss of the mother you knew through her memory loss. That is grieved for .
You realized that you are human and unable to be the everything to your mother although in your heart, you want to be ( that is love) That is being grieved for.
You know mom is not in the same place as Dad and you wish they were together with all your heart. That is grieved for.
And you miss her there with you. Seeing her everyday, you knew the care she received. Now in another place, there can be fear or doubt.
Life is ever changing and in aging, there is degeneration. That is grieved for.
Grief will work through and out. Your love is deep so your grief is deep.
Hugs and do know that in the future you will not question your decision now. You will see that it worked out. There will be positives that will confirm it.

I'm sure that you did not make the decision to place her in Memory care in haste. So, please do not question your decision. You are not equipped to take care of her needs, other than the basics. Feel good that you have placed her where she can get specialized attention by professionals. 24/7 care is difficult with a team and impossible to manage alone, especially with all your other obligations.
I moved my mom from Memory Care in one state to another during Covid, so I could see her more often and better take care of her needs. I wish that I had done it sooner, because I can see the difference in her behavior. She did have a fall during the night after she arrived. Frankly, I was glad that it wasn't under my watch and all I had to do was pick her up and take her to the ER. Give yourself some time to see her adjustment to the structure they can offer her. Just give her your love in any form that you feel will touch her (flowers, cards, music, pictures). You need to give yourself a break from guilt and know that love is what persuaded you to make this decision.

ExhaustedOne,

How are you adjusting? Thinking of you and hoping that you are doing better.

My mom lived with us for 5 years when she had Alzheimer's. The last year, when Alzheimer's progressed, my husband said that whatever decision I made in terms of keeping her here or putting her in memory care, was the right decision. That's the best thing he ever said to me. We decided to keep her here, but that was a personal decision. There's no easy answer either way. When she lived here, I was constantly (out of necessity)at her beckon call. We had tried Assisted Living earlier in the course of her disease, for a week, but it just didn't work. I was there every day, and so I had the stress of driving there, spending time with her (and she was ill-at-easer there) and driving back. I have friends whose mother or father are in Assisted Living or Memory Care, and they do well. Covid has thrown a bit of a monkey wrench in things, but as seniors are getting vaccinated, I'm hoping these facilities will allow more socialization, both from other residents and family members. How does your mom feel about being there? Can you visit her, even through a window? You can assess her mood, her physical and mental health, etc., and then that might help guide your decision. Best of luck.