Ambiguous Loss

My wife needs to have her food minced due to swallowing difficulties. I can't supply that by myself. Also because she is under weight the home measures her intake of food to better be able to make changes to her diet if needed. The dining room staff (PSW's) know of my frustration and sympathize with me but they cannot offer another solution right now. As long as I stay clear at meal times I am OK. That means they have to feed her. I sometimes think that this is as close to being 'mentally ill' as it gets without that other stigma. This one's bad enough however.

Hi mnitchke, it's good to know this forum is here for all of us caregivers as we travel through all the stages of illness with our loved one. As a carer whose husband who told its terminal now, we prepared as was advised. I mainly did all the admin. As directed by my husband. That in itself was exhausting and overwhelming at times. Preparing for death. As more people live longer, I feel us carers become the advocates but there are things that no one can really answer, it's such a day at a time process. There was so much work for me to do to help him prepare, so that when he did pass there would be nothing for anyone to fight over. It would all be in order or sorted before. But there's one big thing that can't be prepared or sorted, my emotional health as I can only deal with it in present time, so I found solace living in the moment often. This is not an easy road, some days are better than others, some days very bad. Keep reaching out and sharing. It's helps me , I hope it will help you too. M.Nina

So good. So true.. So helpful. Thank you for that post.

Hi mnitchke, it takes courage to say when we have had enough for now. I certainly don't judge you or your post. The professionals don't have the emotional bond and history you have. They are objective and personally detached in a healthy way, I try not to compare myself for it usually always makes me feel not good enough and I know deep down that's not true. Your shared honestly and did your best at that table. I don't know if I would of been strong enough to last a minute if that was my husband. Be kind to yourself, your wife would want you to be kind to yourself and it's ok not to be there for lunch until you may feel differently and if you don't feel differently, that's ok too, for I found myself being so hard on myself too. I didn't think I could do enough. I think I'm trying my best because I'm even making this effort on this forum to connect and I'm trying, that's what counts. Wishing you peace and acceptance. M.Nina

Hi @mnitchke,
I appreciate your speaking frankly about the reality of caring for your wife. While staff in care institutions are familiar with end-stage disease and death, they are still hesitant to talk about it with family members. I think this may be in part because they are trained to care for, fix and save. They may also be unsure at what stage of acceptance the patient and/or family members are at, and afraid to inquire. Few are trained in initiating conversations about dying and death, thus leaving this horrible elephant in the room. Often they are relieved when the family member raises the subject first, and they know they are free to talk about the inevitable and to prepare well for it.

Here are a few articles from Virtual Hospice that outline the typical progression of disease and death.
- What can be expected with end-stage Alzheimer disease? http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Support/Asked+and+Answered/What+to+Expect+with+Various+Illnesses/Neurological+Disease/What+can+be+expected+with+end_stage+Alzheimer+disease_.aspx
- When Death is Near http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/When+Death+is+Near.aspx
- The Moments After a Death http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/The+Moments+After+a+Death.aspx

Naturally, every person is different and the staff and medical personal at the home where your wife lives should be able to talk to you about her case more specifically. Mnitchke, allow me to make the assumption that you have been able to initiate the conversations about the dying process with staff. Is this true? Have they still been reluctant to discuss?

I have not initiated a conversation about my wife's end of days. Right now that scenario is way off, as far as I can tell but I am not an expert. On the surface she seems 'healthy'-I know that is an ambivalent statement since her brain health has declined sharply. The home has been giving her lots and lots of extra carbs etc. to cause her to gain weight and she has gained some. She has a difficult time gaining due to her Ileostomy. My wife's mother spent 8 years with Alzheimer's before she met her end. Now comes my selfish nature. I don't want to spend years and years going to a home where my wife doesn't know me, has no memory, no joy, no laughter no life, & cannot share anything with anyone, etc. As I stated in an earlier Post- Her life is empty and meaningless. And the same goes for the rest of the residents there. She still says she 'loves me' but she says that to anyone who comes near her too. If I appear shallow and uncaring, that is not the whole truth. I do care. But at my age I/we were going to do things, go places, have a few years before we couldn't do it anymore due to our age etc. That leaves just me-alone to either do some of those plans or sit and do nothing. I might as well be there with her if that is my future. Do you see what I am thinking? If I can't take off, travel etc. I am a prisoner, and she is the prison guard (I know not the best metaphor) causing me to stay close to home, to her. So I am very close to a selfish decision-to just go where and whenever I please. Of course the 'Home' always knows how to reach me but I want a little more freedom in my closing years. This is all so sad and unfair. Nobody said life is fair. We have to find some joy,peace and happiness in our lives before we leave here. My time for that is shortening.

This is my first post. I just discovered this supportive site a few days ago and have been reading the shared experiences here. The compassionate support spoken here, non-judgmental, kind, makes it easier to say what we feel. Mnitchke, i understand what you are feeling. Your love for your wife shows in your words. But while her body is still on this earth, she has gone. It has been said that we are our memory. I believe that is true. As I live with my dear, once clever and wise husband and watch him struggle to say what he's thinking, to ask a question that slips away if not answered immediately, to ask why we traveled to a place he wanted to go, to tell me again that I didn't tell him we were doing something or that someone is coming to visit, to call his daughter or granddaughters "that girl" or "those girls" - unable to remember their names, I feel the fear of what happens next. I can no longer share a story or watch a movie with him. His attention span is short. He, who once loved to watch sports - football and baseball mainly, will sit for hours watching the tv but can't tell you what is going on or who is winning. On the physical side, he is having bathroom issues, can't remember that he's eaten, heats coffee in microwave but doesn't drink it several times a day and during the night, sits so much of the time his legs are getting weak so he has trouble getting up from the chair. And on and on. I miss him. I miss the man who could tell jokes, who has always been so caring, who enjoyed being with friends and family, who I could tell what I was thinking and ask for his opinion. Long before this became so severe, he told me he didn't want to live without his mind. He fantasized about a "little pill" he would take to end it all if he ever "lost" his mind. At that time, I told him jokingly that he'd have to find the pill on his own or I'd be in trouble. So I understand what you are writing about the life you envision before you and the life you had hoped to live. You have made sure she is well cared for and safe. She doesn't know whether you are there or not. You are the one feeling guilty for wanting to do things that make life good for you. It may help if you ask yourself what she would want you to do. You know she loved you once. And if she had her mind, she still would.

I'm so sorry that you are going through this. I see your pain like I see my dad's pain. He took care of my mother for 64 years. Ten of those years were not pleasant as she had a form of dementia that caused her to change her whole life and become angry and verbally and physically abusive to my dad. She spent the 1 1/2 years in a memory care unit. She was well taken care of and had family there every day. Dad was so distressed that everything that they had worked for was now going to pay a $300/day care fee for mom and he was devastated that he could no longer care for her. He would sneak down to the unit and watch her trying not to let her see him as he did not know how to communicate with her since her language was now foreign to him. It was hard for him to visit because the five years prior to that mom was always yelling at him and tearing him apart verbally. Even though meds had mellowed her out he didn't know what to do. He wouldn't visit her at all for close to 2-3 months after being in the unit. He grieved for months after putting her there. Now he grieves because we lost her the end of June at the age of 86. My dad is 91.

Is there any way that you can attend a support group in your area? My dad was so hard of hearing he couldn't go but I feel it would have helped tremendously. Just to be able to voice your concerns and for you to know that there are others out there that can help. This forum is great but it still is not that one-on-one contact that we all need. I belong to two support groups. One is an Alzheimers group that meets monthly at a care facility near where I live and the other is a group of ladies that got together because of a care giving class that I attended. This is where I found out about the stages of dementia and what the dying process would entail. It really helped when the time came to understand what was going on. I went to a hospice meeting about the dying process that really helped. What we didn't know was....that it would happen so quickly. The doctors or nursing staff did not help as you know. Is there someone from church that you can visit with.? A friend that you can call? I have a high school classmate that has stage 4 ovarian cancer that has helped me more in my struggles than I could even help her!! Is there a senior citizen group that you could get involved with? Check with your facility as to where meetings are.

We had a "care" meeting every three months and met with social workers and staff from the unit. We could ask questions about mom's care and vent frustrations with them. Sometimes the staff on duty really can't say a whole lot. Here we could hash out things that were bothering us. If you haven't had a meeting, I'd suggest that you ask for one. I think that they are required to do so.

One of the things that really surprised us was how well mom could hear and understand what she heard even though she couldn't communicate. She could say "grace", recite the Lord's Prayer, 23rd Psalms, and sing songs. Coloring was the only activity that she enjoyed doing with us. She could read aloud but HATED to be read to. I so wanted to sit and read the Bible to her but she wouldn't allow it. She'd scream at me and hit me. Only when she was dying could I sit and read. She heard every word. There were tears in her eyes. Somewhere in that "diseased body" my mom existed and once in awhile I'd get a glimpse of her. I would cherish EVERY second of the glimpses and will hold them close to my heart. Don't dwell on the dying.....dwell on the living. I miss my mom so much. I would never want her back the way she was and know that she is resting in God's arms. He's taking care of her now just as he took care of her since the day she was born. Cherish each and every day.

Thank you, thank you. Big Hugs from me. You and I are under the same shadow.I am tearing up because what you say, said is exactly how I feel, felt. My biggest regret is that my wife never understood what was happening to her so we could never talk about it, plan for it etc. And then it just hit like a bomb. You are wise and strong and true. I always wanted time to let it 'sink in' to prepare for it. I sit alone at night thinking all this stuff. Why her? Why me? Hasn't she suffered enough? I don't even know if she is 'suffering', now.

My last post here was in August. Since then my wife has continued to decline physically and cognitively. She barely shuffles when she walks and even then she has to stop every 5'-10'. When she walks she holds on to the walls, the railings for balance I guess or safety. She says she loves me but she says that to the PSW's who care for her too so I don't feel very special about her saying that to me. She is now on pureed food. She is unaware of her bodily actions-she often puts her feet up on the dining table at meals. She lays on her bed with her feet on the footboard, and feet on the pillows.

Every rare once in a while she will utter something so candid, so common sense that I wonder "where did that come from?" Obviously there is still a person in there, I just wish I could coax more of her out when I am with her. I am so stressed watching her when she doesn't know I am there. Seeing her reach out to anyone who comes near. Speaking to them as if she knows them or they her. Most of her verbalization is gibberish, sometimes she will actually say complete words like: "Yes, No, OK, Alright, Let's go!" and a few others. Right now because she cannot communicate about herself it was discovered (at my insistence) she has a UTI. And after 2-3 weeks that UTI is now made up of 2 E-Coli bacteria for which she is receiving an antibiotic.If she could tell us about her discomfort this may have been caught earlier. I suspect with 6-12 months her mobility will be reduced to being transferred to a chair of some type. I have given up hope and I am now resigned to watch her sink into a situation no human being should have to endure.