Mom lost her battle with dementia. How do I find a new normal?

Yes it is hard to find a new normal, I would think I needed to call my daughter. It is very hard. Friends dragged us off to fishing camp for a week and that helped. Moving to a new house helped a lot. Being in those same rooms was crushing.

WearyinPit, my heartfelt sympathy to you and your family on the passing of your Mom.

Ah, the "what ifs", we all go through them. My Mom [98] passed in December which was expected, and my Dad [95] a month ago which was sudden, and every now and then I would be questioning myself on how I should have done things differently. Mom was in long-term-care, and Dad was in senior living. But in the long run, the time table for transitioning would have been the same. So I have slowed down on the what ifs.

Trying to wind down from caregiving, be it hands-on and/or logistical [I was logistical] will take some time. I will miss my parents, and I found learning about their medical conditions and what to expect greatly helped me understand each step.

When my Dad passed, I put aside my cellphone [I am not a big cellphone user] as I needed to not hear it ring for awhile. I had seven years of going into panic any time the home phone and/or the cell would ring. And this has worked. I am ready to carry my cell again.

It will take months to forget that last week of seeing your parent in that condition. I rather remember my parents in better times. I was glad both had a very peaceful passing with Hospice.

I am now in talk therapy with a gal who is my age, and had also gone through caring for an elder... thus she really does understand :) My primary doctor has placed me on anti-depressants and something to take the edge off, and that is helping. I finally had to admit to myself I couldn't emotionally get better on my own.

My Mom passed suddenly on Oct 2. I have yet to be able to pack her things and I am just so distraught. I tried getting therapy, but the psychiatrist in my town is not seeing any new patients and my PCP just told me to take melatnonin. I feel so lost.

Sorry about it. But I guess we have to take it in our stride. When they are around, some days we caregivers go mad and to day when they are not around, we are ready to do everything to have then around. My mother is 85 and has Alzheimers. Just last weekend, talking to her she expressed "Maybe you took up the responsibility of taking care of me, possibly assuming I would not be around so long.. but I am still around. It is sad to hear these words.Maybe I have faulted somewhere...

My father passed in August and I am still shocked that the first diagnosis on the death certificate is Alzheimer's Dementia. To some degree I don't feel like anyone got anything right in his care when it comes to diagnosis as Hospice stepped in so quickly. I wanted exact. I wanted absolute answers and you don't get that. The tasks of it are painful. There is a business in death and papers need to be filled out, accounts closed and thank you notes written. I just finished the thank you notes last week and that was a killer. Actually that isn't even true. I have a few more left. I read that in the end we cared and we did the best we could and that has to be enough. This healing will take longer than I thought. I wish peace for you. For both of us. God bless you

You could reach out to Hospice and ask if you could speak with one of their Chaplains. They understand that families are going through a transition and they are trained to help.

Do you have a church or faith community? If so there is probably someone who could be of assistance. A pastor, someone who has gone through a similar experience and or a small group of some kind.

There are Grief Share (and similar) groups around the country. These are specifically to help people deal with the death of a loved one and find a new normal.

You might also enlist the services of a coach who could walk with you during this time and provide some objective feedback. A good coach does not tell you what to do but does help you clarify your goals, understand your reality, think through your options and make a choice.

[Note: I am a certified coach and ordained clergy. I work with a variety of clients. If I could be of service, please let me know. I do not mean this as an ad as much as helping people be aware that they have options.]

I use to think the "at least she's not suffering anymore" phrase was so cliche - but that was a few years ago - before watching my mother suffer. My mom didn't have a physical disease like cancer or Parkinson's but dementia was tearing her brain apart. In truth, my mom hadn't been happy since my dad passed four years earlier - they were married 62 years and had a great passion for each other until the day they died. Hard as well, was seeing my mom realize her mind was going and watching her desperately trying to cover it up and deny it was happening. It wasn't too much longer before she really didn't know it was happening any longer but with that came changes that made my mother a complete stranger to me. If mom had been able to see the person she had become she would have hated it. Finally, the stage of not being able to eat hit and I watched my mom waste away to skin and bones. Finally mom passed on August 30, 2016. The death certificate listed "malnutrition" as the primary cause of death - talk about a kick in the gut. And her suffering. My mom lived a full life, she accomplished amazing things - and for most of her 89 years she lived her life on her terms. So yes - I take a great deal of comfort in knowing she is no longer suffering. Mommy and I didn't always get along - but I respected her, I loved her - and I do miss her. Friday's were my written in stone visiting day - in six years I only missed about four. Now I devoted Friday's to moms estate work - but when that's finally finished, I think I'm going to figure out another way to spend Friday's with my mom. Weary - I'm sorry for your loss and at least your mothers suffering is over. I hope that can provide you with a small measure of comfort.

I am so sorry for the loss of your mom. My mom passed away on October 8th after suffering with dementia and a host of other medical issues as well for a number of years. My guess is your mom had dementia for much longer than anyone realized. I know mine did. Sometimes our loved ones are able to hide it fairly well until they can no longer. Then it seems to us that their passing happened very quickly when in reality it had been happening progressively. You did all you could to take care of your mom when she needed it the most, so please take comfort in that. And hospice is not just for the dying patient - the nurses are also available for the grieving families and are usually very skilled in helping and especially providing perspective and comfort. That's what they do. I hope you find peace with time and remember the mom you had and the happier times.Warm hugs.

My Mom too had dementia and died Sept. 2nd. We were not expecting it so it has been a shock for us. She was able to stay home with Hospice and family helping with care giving. During that time we had many special moments with her. I try to focus on those times and the Mom before she was sick. But I still miss her so much as well as care giving times.
My Mom loved to do tole painting and it has become a hobby for me too. It does really help and helps me feel connected to her. She had many favorite recipes so we would like to compile them sometime. I guess you would say we are trying to feel close by being involved with things she loved. There are good articles on line that describe the grief stages and suggestions to help.
My heart goes out to you and I hope this has helped a bit.

My heartfelt sympathies to all of you who have gone before all of us in watching your loved one pass away . We are here to share stories and support for family members who are aging and in our care. So many of the members have parents who suffer from dementia and ALZ and you have witnessed a long and courageous battle. Your thoughts express how horrible it can be( or is) and how 'long" this battle can go on. None of us are prepared to watch our loved ones suffer and after it is over question what we might have done, should have done different.Please tell yourself you did your best.Seek help when needed. Give yourself time and recognize that it is acceptable to move forward. My Mom died instantly at 57. My Dad is 91 and was diagnosed with ALZ 10 years ago. I cannot tell you if one form of death is better than another but I often list and compare what I have witnessed, not only on myself but on them. I only know that , like you, death happens and we cannot stop it. Like you all I will mourn my Dad's passing as I adore him....just like I look skyward every day and tell my Mom I miss her and love her. Hugs and comfort to all of us on this physical, emotional and spiritual journey.

Many years ago, my father died at a ripe old age. I was sad but realized he had enjoyed a good life...Then two weeks after his death, I picked up the phone to call him and I almost started to enter his number and was shocked to realize I could no longer call him. That feeling persisted for awhile and eventually faded. For me, time took time..

Grace + Peace,

Bob

It takes a long time for habits to fade. Lost my mother (at 94) last spring. Thoughts would pop in my head- "wonder how Mom is doing today", "need to visit Mom soon", "need to remind her to watch a TV show", etc. Very painful every time that happened but getting better.

WearingPit My Heart goes out to You as so many of Us here know the pain of great loss. Once I asked the Question on this Site WILL I EVER BE ME EVER AGAIN ? and some kind Soul answered NO, but You will be a better You after this is all over, and I feel that I am. One golden rule in Caregiving is NO regrets. Remember You did every thing that You could possibly do for Your dear Mom Who is now in Heaven, so this is Your time to grieve and to heal. I found going through all the Family photos helped Me greatly. I wrote long letters to Mothers Brother & Family in New Zealand, I placed a framed photo of Mother in the kitchen on top of the work top and I talk to Mam some times. Some might think I'm simple but it works for Me. I really adored Mother Who was the Heartbeat of Our entire Family, and the pulse of My Life, and while it's only four months since Mam passed away I feel that I have healed an awful lot since. While I knew Mother would die from Alzheimer's I never expected Her to pass on so soon. There was no warning sign as Mam was in perfect great form and like You would blow out a candle " PUFF " and Mam was gone, Rest in peace Mother.
Give it time WearyinPit and You will get strong again, and the sun will shine.
While all the posts here are brilliant I must compliment Ann1017 as Your post is just beautiful.

I am still awake in the night expecting to hear the sounds of Dad needing help. I find myself listening for the sounds of the air concentrator.

My major comfort was keeping him home. He was surrounded by family, and the home aide he came to love as family.

I cleared out all him possessions as quickly as I could. Even his bed is gone. I tried to remove anything which would upset Mom, and deal with the aftermath as fast as possible.

One thing which helped....my brother was finally able to come over to visit. (He actually came to get money from Mom...as I learned later). He talked nonstop for 5 straight days. Mom and I both enjoyed the silence when he left!

Im so sorry for your Moms passing and I feel your pain as I have that pain everyday myself.My Mom passed last May and its been over 1.5 years now but the heart and pain are still with me everyday.My Mom and I werw not just Mother and Son but best friends and that makes it all the more hard to get over her death. My mom was 89 and still healthy and came through 2 knee replacements,a hip replacement, heart valve replacement and got hit by an SUV walking to CVS two blocks away and survived all but developed a urinary tract infection and,The Cipro the doctor gave her for it blew her kidneys out.I cannot get rid of any of her cloths and now regret all the places her and I went we did not think to take more pictures together.Our parents teach us so much growing up but not how to handle death.I have done support groups but it just rehashes the pain.I wish you great love and know what you are going through.God Bless You.

WearyinPit - I am so sorry for you and your family. My mother has been in a facility for approx 4 years and was doing so well till June of this year. She had a fall and ,it seemed to me, an amazingly quick onset of Dementia. She was like a totally different person with out of the blue onsets of anger and nastiness and she never gets out of the chair now, Add that to her exceedingly poor vision and she is miserable, I too am saying - how did this happen so "out of the blue"? Where did this person come from? My heart breaks so see her so miserable now !
The Care Center she is in has Hospice and Chaplins that are always available for help and just for a talk however. My thoughts are with you - it is a very , very sad disease -not only for them but for the family also. But your mother is at peace now and free of her confusion and stress and anxiety. chaplins also that are very comforting and offer help. of the blue?e

my mother died two weeks ago...dementia...bedridden the last 14 mo. of her life...and I was her sole caretaker. i adored my mother...and watching her little body fade away in that bed...still breaks my heart. i keep busy, im painting our studio apt which im renting soon. i am much happier that my mother has passed and does not have to live in a bed not even able to scratch her nose!! thank god...she's in heaven now...and thank god...i don't have such tremendous stress wondering on a daily basis...how much worse is she going to get! be happy she's in heaven!

You are in my thoughts and prayers. This sounds exactly how I feel now.
My mom is also dealing with dementia and it is also going fast. Going
from someone that was extremely strong and controlling everything to
someone that doesn't even remember her husban an

Sympathies to all. Your Mom may have willed herself to die. My MIL did. They get tired. In early stages they realize something is wrong just don't understand it. My Mom sits at her AL not joining in on anything. She loved Church but wouldn't join in at the service held at the AL. Said she didn't do that anymore. She was very involved in her church. She can no longer read a book, drive her car or be in the home she lived in for over 50 years. Would you like to live this way? Not me. If you believe in heaven, she is in . nicer place hopefully surrounded by loved ones who passed before. And... she is whole again.

Hospice programs sponsor grief support groups, there are also other groups that are helpful.
Don't try and rush the process, do some physical activity, try to keep to a routine, and be kind to yourself. Delving on what ifs or should haves, etc can be exhausting.

As a retired hospice nurse, I know families feel shock when a loved one dies, even though the person was very ill, and death was expected. Give your self time to gain perspective.

I'm so sorry about your mom, WearyinPit. I'm especially sorry about her suffering at the end. Generally, hospice can take care of that quite well.

Your grief and need for adjustment are normal - something that we all go through to some extent. As was suggested, hospice offers grief counseling for up to 13 months after the death of your loved one. I'd suggest that you take advantage of that.

I've found that I carry my loved ones with me now, in spirit, and often feel them with me, but that took time. I had to grieve first. I also found that the grief pattern varied and often when I felt that I was doing well I could still get hit with a wave of grief.

The coming holidays will be difficult. I lost my dad on December 2. My uncle died over the Christmas holidays. My mom not too long after Christmas (not all the same year). But their deaths colored the holidays and always will to some extent. You'll feel your mom's loss extra hard then, so you'll have to give yourself the gift of understanding.

During this whole process, don't expect too much of yourself. You may want to read this article when you feel better: https://www.agingcare.com/articles/after-caregiving-is-stress-the-new-normal-163252.htm


I'm grateful that you found help through this community. Please keep in touch. You aren't done with caregiving yet. You need to practice self-care now more than ever.
Carol

I take comfort in the thought that my mom's love for me has not stopped, just changed to the spiritual world. My love for her has not stopped either. The religious teachings I follow tell me that by saying prayers for my departed mother, I can help her soul move closer to God--the desire of all who are in the spiritual world. Also, doing good deeds in her honor or name helps to. When I behave in the best ways my mom taught me and do things "right," I honor her memory. That awareness of what she taught me, how she influenced me makes our connection seem so real and strong still. Sometimes that understanding only comes years later on reflection. We will all face loss--that is the human condition. But with loss, we develop compassion and understanding for others going through the same thing. Then, if we can act towards them with compassion and understanding, we are putting to good use what we have learned. In this sense we are all on the same journey and I wish you well on yours!

My heart goes out to all of you who have recently (and not-so-recently) lost a loved one. My dear mother passed on September 14th at the age of 89, and I miss her like crazy! But I feel her all around me - in the classical music I still listen to, the things she's given to me over the years, the ring I now wear that was hers. I am so grateful to have had the opportunity to care for her since my Dad died in 1986. At first, it was just driving her places and going for outings. Then it was bringing her meals to put in her freezer and doing a bit of cleaning. What followed was a progression of staying at her house or bringing her to mine. Finally, she moved in with me and we sold her home. I gave up my job in 2013 at the age of 63 to be with her, and haven't regretted it for a moment! Yes, those last two months when she was more wheelchair bound and quiet were disturbing, and the last two weeks when she gave up eating and then drinking were gut-wrenching. But we enjoyed the time together as best we could, listening to her favorite pieces of music, looking at the photos I had scanned and put onto DVD's, singing (mine), and reading to her aloud, and holding her while I lay next to her in the bed and talked about whatever came to mind. It didn't really matter if she understood a word or knew who I was. As a matter of fact, her last word to me was my first one to her, "Mama!" Yes, I sometimes see those last moments and afterwards in my mind's eye, and I can understand fully why people might need and want to call in hospice workers. I think my best advice to myself and anyone is to be kind to yourself. Allow yourself time to grieve, keep the Kleenex handy, do things that comfort you whether that be reading, or walking, or just sitting and staring at the wall. It's all ok. You don't have to go out and be social. You can be quiet at work. You don't have to clear out their stuff right away. Feeling that we are breaking the 'rules' of bereavement leads to self-condemnation, and we don't need that. We should be proud that we did something that others are not able to do. Perhaps if we did it on a daily basis, like a hospital worker, we'd have to become anesthetized to suffering in order to cope. But we only have one set of parents, and they'd want us to care for ourselves and be gentle. Even well-meaning friends can push us into thinking we need to 'get back on the bike.' Let's not listen to that. We won't forget how to ride.

(Hugs) I'm caring for my momma with dementia and I hurt for you. I've asked the same questions you are, wondering how I will handle it all. Let God comfort you and lead you, He will. When we don't know what to do, or where to turn, He will show you. Jesus loves you. (Hugs)

Slowly,slowly..The adrenelin has been pumping;you have been on Alert mode for so long. Your body has to adjust. I think of it as being a deep water diver;you cannot rush it or you will get the 'Bends'from coming up too quickly..For me it took a long time to adjust:body,mind and spirit. I would even find myself buying food for my deceased husband! Looking for him when I came into our home...
It is all normal.Then, you might enjoy a few days; then back to grieving again.
Slowly, try to do something YOU like..a cup of coffee with a friend; going to the library;take a class. You whole self is growing into a New Self. Be very,very patient with yourself. The death has planted a seed in you.
When our loved one dies,there is, in a way, a seed planted in you. Ever so slowly that seed must break open,germinate,and finally grow into a New You.
You:Body,mind and spirit have been on High Alert during the terrible time of the suffering and death. In a split second it seems the breathing stops. Your world is again turned upside down.The High Alert is over...That is a shock to your body and spirit and mind. Try to live in the moment. All the other answers I agree with one hundred percent. Great advice. Live in hope. All will be well.

WearyinPit, so sorry for your loss.

I'm so sorry for the losses you all share here. It's not easy by any means. One thought that may help some as it did for me and my mom when my dad passed was Grief Share. Many local senior centers and community centers as well as churches have Grief groups that are so helpful both mentally and physically. It might be worth checking into this when you feel up to it. Ask a friend to go with you if the first time attending is hard.

Wearyinpit

I am so sorry for your loss. Many of us have given our all to help our parent and those helping our parent as best we can. As your mother traveled this, it became a journey, for both of us. Please do not rush your emotional loss.

Lossing someone close to us hurts physically and emotionally. We must allow ourselves to heal. I am sure you have heard there are five stages of grief. No matter who you maybe this is true. Taking the time to work through each plateau will provide you with some answers and make life better for you.

Many people express the five senses in what many call overload (sights, smells, hearing, taste and touch) during this time. There are times when walking in a store the smell of cologne or the song we hear playing will bring us to tears. We must allow our emotions to become open again for a productive life. Let these feelings happen and search through them to find the answer to this emotion is going on. It is very true so we must begin the work of clear our emotions while respecting this person. We will always remember them and all they brought to our life, just not so much the hurting and pain.

Family members all grieve in a different stage of loss. Try hard not to judge the thoughts or feelings others may express. Each of us must go through these steps. Journaling is great to use as we move ahead with our day to day lives. And journaling is a two-fold process. The first part of the process is to help us see all we have brought to this person and how this gift will help us and others as the need arises. The second part of this process is to provide a springboard for others as they work through our death.

Do not assume just because she went into a facility and declined was the reason for her death. Undiagnosed conditions and/or depression could have assisted in her decline. Stop focusing on why or how she declined so fast, just be thankful the good Lord has another angel watching over you! Most dementias take years and sometimes a decade or more to resolve putting their loved ones and caregivers in unhealthy states. Quick is better...My condolences to you and your family.

WearyinPit I am sorry for your loss. My mom passed away on August 16 2016 from natural causes including dementia and pneumonia. Every weekend, I used to visit her in nursing home. I love and miss my mom a lot. I figure that it'll take time and grieve. My "new normal" started about a year ago when my mom acted differently and started going downhill fast. Now, I will have the."new normal" again with my dad who has dementia as well.