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AmazingGrace Asked November 2011

How will I cope when my mother dies here in my own home?

I lived with and took care of my daddy and mother when he was diagnosed with a brain tumor. When he died I moved mother into my home with myself and my husband. She was in mid stage Alzheimer's at the time. When he died in their home, I could not wait to get out of that house. It was like I was smothering and sick there. Now she is in the last stages and I know she is going to die in my home. I'm starting to worry that I'll have those same feelings, but this time, I have no choice but to stay in my home. Can anyone give me tips on coping? I've also been feeling very depressed lately, because I know that she doesn't have long. I really thought that I was prepared, but the last few months, I have realized that I'm not anywhere close to being ready to let her go. I am an only child, I'm 59 years old and it sounds foolish, but I feel as though I'm being abandoned and left here alone.

Nancyjrealtor Dec 2011
Tell you parents how much you love them everyday. My mother just passes on November 19 of last month and even though I miss her dearly, I know she now has no more pain and suffering from the cancer.I arranged for her to die at home, had all the hospital equipment delivered to my home the day she died. I wanted to grant her the last request, to die in her room she said, at my house. So tell them each day you love them and thank God for having the time you have with them .....you never know when will call them home. May peace and love be with you always...njm

graceterry Nov 2011
Katybo- call your local hospice NOW - today - and talk with an admissions nurse about the process of having your mother-in-law admitted to hospice service. From what you say, your mother-in-law has been appropriate for hospice care for some time. Often primary care doctors or specialists will not mention hospice care to families because it is such an emotionally charged issue and they don't know how or are not willing to deal with the emotional fallout of discussing hospice. However, if the family raises the issue, the doctors will often be very cooperative with a referral for hospice care. Once you have hospice care, your mother-in-law will get excellent "whole person" care (i.e., not just physical care, but also emotional, spiritual, etc.) AND SO WILL YOU - which is entirely appropriate and reasonable right now. Not only the doctors and nurses, but also the social workers, chaplains, home health aides - will be there for YOU as well as for your m.i.l. Also, if you haven't done so, reach out to your faith community and be as honest with them as you have been here. You deserve to be supported right now. Later on, you can pass the kindness forward ...by helping some other caregiver who is struggling. But right now, get help for yourself so you can be there for your husband, his mom, and others...and so you can be at peace. You don't have to do this alone. Blessings to you and to your family.

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kathyinaz Nov 2011
My 91 year old mother-in-law has lived with us for 8 years. We had to go to her home state, sell her house and bring her back with us. She was so sick at the time, I didn't think she would last a year. She has several issues including diabetes and kidney problems and we have done a good job of taking care of her. Every time we have to call an ambulance, which has been several times, we think this is the last time she will come home. She has chronic kidney problems and has had surgery several times for stent exchange, but last year the doctor took the stent out for the last time and said she is too old to keep going under anesthetic. She also has dementia, which is getting worse. I think about what it will be like when she passes away in our home. I pray that it will happen while she is in the hospital for something. I told a friend that I didn't want her to die in our home, and she said when her mom died, she was honored to be there for her last breath. Everyone feels differently about death. I know where she is going when she dies. We are Christians and have no fear of death. But the process of the body dying is a scary thing to me. I don't know what my reaction will be. I think it would be so traumatic, I could have a heart attack. I think hospice would be a good thing for us, but at what point do you have them come in? Does the doctor have to give a referral? Thankyou for all the good advice. I have started putting together pictures for a collage for the funeral. She and her husband had their caskets and plots prepaid in PA. Since we are her only family left (my husband is an only child), we will have a short private viewing at a funeral home here and send her to PA for burial in their plot. She was the youngest in her family and all her siblings are gone. We don't feel there is any need for a long drawn out funeral. Preplanning the funeral ahead of time is a good idea while we still have our wits about us. It has been so stressful the last 8 years...along with caregiving, we are dealing with kids who are going through a separation and all the stress that goes along with that. I fight depression constantly. Our marriage has suffered. I am only 58 and I feel like I will die before my mother-in-law. I feel guilty that I am not handling things better. My own mother died at age 66 of cancer. Maybe I am resentful that she died so young and my mother-in-law, who has been difficult to deal with, is living so long. I know we are doing the best we can for her, but I guess guilt and resentfulness are normal and human. It is not easy. Thanks for listening.

graceterry Nov 2011
Actually BEING an orphan and FEELING like an orphan are two different things. I remember the feeling of being orphaned or totally abandoned when my second parent died. The feeling passed, and now I do realize that my parents are both always a part of me, but the feeling was very real at the time - in addition to many other feelings that needed to be expressed and honored in order to be released....It's called grieving a loss and the feelings are normal and deserve to be supported/accepted/expressed. Okay, back to the original question - I have 2 suggestions: 1) get hospice care, if you haven't already. It will make a huge difference now, at the time of the death, and afterward. After the death, hospice will provide bereavement support which you may not think you will need or want, but please give it a chance before you decide. (2) If you haven't already done so, make funeral/burial/cremation arrangements NOW - don't wait until the time of the death to contact a funeral services provider and make arrangements. Establish that relationship NOW and you will be so glad that you did. It will make everything so much less difficult and stressful at the time of the death if you have already made plans/arrangements/payments and have signed all the paperwork, etc. that can be done in advance. Blessings to all -

sharon8 Nov 2011
After my dad died, my mom stayed in their home but was unhappy. Meanwhile, my family was moving and would no longer be in the same neighborhood as Mom, but about 25 miles away. After much soul-searching, it was decided she would sell the house and move with us. In the new house we gave her the master bedroom, telling ourselves that it would only be a few years. Mom is now 93 and has been living with us for more than 12 years. The kids have grown and left the nest, and it's just the three of us now. I still look forward to having the master bedroom someday, but now I am worried that she will die in that room and it will "ruin" it for us. Like the original poster, we don't have the option of moving. I hope some of these suggestions will help me when the time comes as well.

mariesmom Nov 2011
Making preparations ahead of time is't morbid - its smart. Having as much in place as possible means you're not forced to deal when you are emotionally overwrought - especially when your loved one dies at home. You are less likely to overspend, less likely to forget something of importance. The down side to preparing ahead of time means you have a lot more time on your hands.

I worked from a list. Kept in on my desktop and in a 3 ring binder. Real important stuff I emailed to myself so I could access it anywhere if my list was lost.

I wrote Moms obituary a month before she died. Obits charge by the letter now in many places. if you are on a tight budget you may have to mince words. Decide where you want the obit to run - if indeed you want one at all. They are not required.

I also began work on Moms eulogy (we are not religious and thus were not using clergy) a month ahead of time. This I was still working on the morning of the funeral because it was my last chance to say the things I wanted. I was well satisfied with the result - and most importantly, Mom would have liked it a lot.

I will gladly share my list (send me a personal message) of what to do and when to do it, the eulogy, etc., if anyone has interest and need. I know there are lists out there - but none of them I found were all-encompassing or covered taking a loved one a distance home for burial.

Sherry777 Nov 2011
No-one is an Orphan !!! Unless you were adopted? Your MOTHER or DAD CONTINUES TO BE A PART OF YOU TIL YOU DIE. THE CIRCLE OF LIFE CONTINUES . My Mother passes away September 24 of this year and I would not want her back the way she was. That would be just SELFISH. Her condition had her crying out to JESUS every day asking "WHY". She is at peace and has no more pain and I feel her prescence every day as she is a part of me living inside of me. Well you should know what I mean IF you've lost a parent. You'll be just fine, IF you have a certainty of where your going when you die.

Janicd10 Nov 2011
Thank you all for your heartfelt replies. While I have just moved my widowed Mom into our home this summer, I know the day will come when she will pass away here. How I dread it! She is our last surviving parent and I will miss her so. I even have her obituary typed out and stored on my computer. I know that sounds morbid, but I know that when the time comes, I won't have the presence of mind to remember details. Mom is 90 and for the most part, healthy, but you never know. Blessings to all of you.

JaneB Nov 2011
I woke up this morning, thinking about how my Dad, who has moved in with us, will dies in our home. He is not diagnosed with any "terminal" condition, but he's close to 88. He sleeps 20 hours a day. Less and less interested in life ( yes, he being treated for depression and it feels like his docs are not over-medicating him). I was wondering what the practical steps were I should follow when tne morning comes that he doesn't wake up. I'll be burying him 8 hours away, so Marie'smom's answer was really useful. I feel guilty trying to figure out the "who do you call" steps now, while he is still living. But I know it will make those hours easier, if I have a plan in place. I haven't thought much about how that room will feel afterwards, but I am now. Anyway. What a lovely serendipity that this question popped up today, so close to my own questions. Thank you all, and blessing to you.

jennieb Nov 2011
My Dad died at home as he had wished. He had cancer and lingered for over a year after being diagnosed. My mother could not handle the memories in her home and sold it quickly. I think she has regretted it ever since and I know I do. I helped build their house and looking around, I focused on the good memories made there. Even at this hard time, there may be moments of laughter, of sharing memories or just the comfort and peace of holding hands. Hang on to those things if you can.

princesskeli Nov 2011
You are so brave and strong. Let me tell you, I had to sit by my dad;s bedside in a care home listening to him begging to go home and not being able to do anything about it. I would have given anything to have been able to give him what he so wanted. I hear how hard it was for you, and people are right in all their comments. I don't know how this sounds, but when my dad died, I felt like you. It was as if I'd been hit by a truck. Have a plan. Write down everything that you know is going to happen, then have a plan about what you're going to do. tell people how worried you are about what's going to happen to you. It isn't selfish. It's important. Would it be possible for someone to come to stay with you? People aren't mind readers. tell them. Tell as many people as you feel you can about how scared you are. real friends won't want you to feel like that and advance notice will give them a chance to get something organised. You've been a care giver for so long, accepting care from someone else might be difficult, but you'll need the support you willingly gave.

mekluss Nov 2011
I know it is hard. my grandma passed away (march 2002) in home and was 67 years old.. It will take a long while to heal. I am only a child too and she is like mother to me.. i know how u feel.. I was stuck with flashback for 2 years.. its okay to think about it but at same time not try to think about it all the time. go enjoy what you likes to do..it is okay to cry all the time to vent it out. or find someone who will listen to you and share with you.. I finally moved on and its take me about maybe 3 years or more. my prayers is with you..

AmazingGrace Nov 2011
Thank all of you so much. Kuli, you are right on in making me realize that I should be focusing on the fact that I am financially, physically and emotionally able to keep and take care of her in my home where she is cherished and loved. Jamie, I felt a kindred spirit with you when I read your reply to my post. I also tried to get rid of some of her clothes that I know she will never need again, but it is just too hard to do that when she is still here with me. I, too, felt as though I was giving up on her. She also has been on hospice almost a year, but has leveled off and we are also in the waiting game and the anxiety is affecting every area of my life everyday. You're very wrong, Jamie, your reply helped me more than you know. Maries Mom, your reply is full of so many wonderful ideas to get me through the days that lie ahead that I am dreading so much. And, you made me realize that I will be able to go into her bedroom and feel as if I can talk to her there instead of a visit to the cemetary. My prayers and best wishes are with all of you as well.

mariesmom Nov 2011
Amazingrace - Mom died here at home on September 17. She had Alzheimer's and was 89.

I'm almost your age and an orphan now myself. It's not silly at all to feel a sense of abandonment. Anyone we've know our entire life - and whether we like them or love them or not - but with whom we have had an ongoing relationship - is going to leave a huge hole in our lives when they are gone. And shouldn't that be the case? I would hope my own kids would be out of their minds with grief and loss (for a suitable period of time, of course) at my passing.

Your Mom has been an ongoing witness to your life, and you to hers.

With that connection lost - it's going to be up to you to either trudge on alone and shaken, or to forge new relationships, new connections, new reasons to get up in the morning. It's not that important how you do it - just that you do it. Work, volunteering, church, renewing old friendships or family ties, even finding people (like on this site) that have been through the same experiences you have. I found a message board here just a month before my Mom passed, and the support and friendship gained from it has been the silver lining in the loss of my Mom. I still come here every day

I had hospice here - having Hospice made a tremendous difference in the quality of life in my Moms last days and in my ability to cope with it.

If you haven't already called your local hospice, I would urge you to do so. I did not go through Moms doctor. I called hospice and they did it. They took care of everything. Socials workers to see if I needed anything, counselors to see how I was coping, people to bath Mom (every week day in our case), meds to ease her pain, volunteers to simply sit with her. They will assist in planning the funeral or memorial service, come immediately when she passes (if they are not already there), call the funeral home, perform the final bathing/dressing (I chose to help with this but one doesn't have to), and stay with you until her body is removed. I said my last goodbyes to Mom after we bathed and dressed her, and had my husband pull the sheet over her face. It was to be 3 hrs before the man from the funeral home came, and I chose not to watch them take her out.
This is difficult stuff. I am right back there 60 days ago reliving it all. It's is something I could have done alone, but with Hospice I didn't have to - and I am very, grateful they were with me, as well as being on call 24/7 the last month of Mom's life. They gave me comfort just as they did Mom.

Also depending on where you are located, you might have the option of Mom going to a hospice facility rather than having her die at home. The facility here is a beautiful, peaceful place rather like a nice hotel and not at all like a hospital. (I had this choice but did not take it). While in-home hospice is covered by Medicare, going to the facility does cost out of pocket - I think it was $200 a day here. For those who can afford it may be the best option.

After the funeral home took Mom away - in fact within the hour - I stripped the bed and threw away the linens and pillows. The precious covers she loved, the warm housecoat she wore, the knit cap she wore on her head, the doll she slept with - these all went into the wash. I threw her 'daily supplies' away as well - and then threw a lovely cover over the bed and put her photo on it. I put some new air fresheners in her room then, and closed the door. The things I had washed and dried stayed in the laundry til later.

I was burying Mom 1000 miles away, so I had to leave early the next morning. Once home again a week later, I was able to return to a room that was somewhat in order and that helped me emotionally. I had a community action agency come for the bed (we had purchased the hospital bed) and her wheelchair and walker and the other extra supplies we had not used. When all of Mom's 'stuff' was gone other than those things I chose to keep or save for other family, I did a 'ritual blessing' of the room by burning sage. (Might sounds silly I know - but it made me happy to do it).

Today, Moms room still smells like flowers. I go in there every few days and tell her I miss her and love her. And while I still grieve her loss I also realize it was her time to go, and I was lucky enough to have her for as long as I did, and I did a very good job of taking care of her. And that's all any of us who care for our parents - whether at home or not - can do.
I urge you to reach out for help to get you through this, and to give ample thought now to your day to day life once she does pass. It can be a great comfort to be at least somewhat prepared.

I wish you all the best.

yellowfeever Nov 2011
I face this challenge as well. For me, I moved in with mom when she was mild stage. Now she is last stage Dementia as well. This is now me and my family's home. My father passed away here in this house suddenly 6years ago. That in itself bothers me. Now I am facing watching my mom pass away here as well. I know that when she leaves this earth she will be in a better place. But right now I struggle with loosing my last parent. I know I have started grieving her loss. But when the time comes I don't know what to expect. She went on hospice in May. I honestly didn't think mom would last till christmas and that was a long stretch of hope. But mom has leveled off. So its like a waiting game, my anxiety has been growing. There are days I sit and cry. I tried to eliminate some of moms clothes the other day, thinking that would be theraputic and helping me accept whats coming. It took me hours and I boxed up only a few things. I felt guilty doing it like I given up on her. I, of couse placed box in attic instead of donating them. My husband says I am holding on to the past. Mom will never be "her" again. This house is full of all my childhood memories, even though we have been updating this home to our taste and I feel guilty doing that!!

I didn't offer you any help, but I hope I gave you some comfort. I understand your emotions. For me, reading your post helped me see that I am not alone in this day to day struggle.
JAMIE:)

kuli Nov 2011
My dad died in our home on October 26th. I too thought I was prepared but am still struggling with letting go and accepting that he is gone. I have not been able to remove his stuff as yet cuz, in my mind, I want to think he's coming back. Living here everyday certainly makes you have to keep facing reality and I think it may accelerate the grief process. You have no choice but to face it each day. I just try to remind myself that dad would not want me to be sad but to be thankful for his peace, his freedom from his worn out body. At this point, I feel comfortable and don't remember his passing here but instead find comfort that I was able to afford him that one gift - to stay in his own home until the very end. I hope you will be able find that same comfort. Kuli

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