Ambiguous Loss

Posted by mnitchke @mnitchke, Aug 17, 2017

My wife of 51 years began her slide into Dementia over 8 years ago. She just turned 72. After 4 months in a Hospital she was finally placed in a Long-Term Care Facility (for memory impaired), a lock-up where she has been for just over 3 months. She does not remember me, calls me “Mommy” or “Barb” her sister. Occasionally she remembers my name. She shuffles when she walks. She has poor eyesight now. She needs help with bathing, dressing, eating, toileting, basically everything. She cannot form a complete sentence but does come out with words once in a while that I know and understand, mostly though she tries to talk but the words just don’t come out as intelligible words. So she’s here yet she’s not here. She has no joy, no laughter, no memories to share with me or anyone, and I’m not sure if she can feel anything, emotionally or physically. My visits are arduous because we cannot have a conversation. I can’t tell her things, share anything with her. She is constantly agitated, anxious , and I fear she is lonely, bored and scared. And there is nothing I can do to assuage her feelings if in fact that is the case. I come home feeling depressed, lonely too. I don’t know what future (time here) she has. Nor do I know how to plan my own future. I am 73, reasonably healthy. I have guilt feelings all the time. I feel sorry for her, and me. I watch her in the home and she just behaves as if no one cares, I guess because to her no one does. Or she is just living in her own little world. To me her life is empty and meaningless. I am at a loss. I feel as if my life is on constant hold, frozen in this daily warp of dementia.

@colleenyoung

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?

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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.

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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.

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@mnitchke

This will be my last post today and maybe for a while. It is this: My wife and all the ‘other’ Dementia patients where she is are in a living ‘warehouse’, waiting for the inevitable. But no one says, tells you how that’s going to come about, how or when it will happen. Everyone in the home behaves differently. So there’s no consistency, nothing to point to, to confirm their status, their stage of their disease. It’s up to the family, loved ones, or just the professional caregivers to determine when the end is ‘near’, when the person has reached the final stage. I sure as hell don’t know. No one talks about it. It’s the goddam biggest elephant in the room! But everyone on that side of the desk ignores the signals, the signs, the little hints that something has changed or is changing. So my quest to people, especially spouses of people with Dementia is: from your experience is there a sign that they are closing down? Do they stop eating? Stop walking? Sleep more? Sleep Less? I don’t know what to expect and no one is telling me anything, including the Alzheimers Society website. So shoot me but I am pissed off. Let’s stop tip toeing around the big question especially once your spouse has reached a certain stage. I will let the reader guess the question.

All I really want is the truth so I can prepare myself, my family, our friends, for what comes next.

Bon soir mes aimées.

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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.

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@becominghisma

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.

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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.

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@becominghisma

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.

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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.

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@becominghisma

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.

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Hello @mnitchke Yes, watching a loved one descend further and further into the depths of chronic, irreversible disease is hard to watch. I know it was terribly difficult with my wife for sure. In her case it was not only hard on me, but she was cognizant of each loss she incurred and that was a totally different kind of devastation for me to witness. Tough stuff for sure for you to go through.

It is hard to remember, but when in the throes of dementia our loved ones are changing before our eyes and we are unable to instigate any type of changes in them, no matter how hard we may try and how hard we may wish it to be different.

It is good to hear you are there for your wife and are watching for those things the staff does not always see.

I wish you continued strength, courage, and peace.

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You may find help at some support group, when my husband was sick , that’s what helped me.

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I don’t know if you are checking in here but I just happened on this conversation and am thinking about you particularly because I worked as a nurse in a facility with many residents like your wife. At your wife’s next care conference I hope you can talk about what you have here. I would say this. You do not need to go every day to visit your wife. Give yourself a schedule that allows you to grow a new life for yourself, this life that already to much extent doesn’t include your wife and eventually won’t at all. An every day schedule is too hard. Also, I would think your wife would qualify for Hospice enrollment. There is so much kindness in that program for the one suffering their condition as well as their loved ones. They will support you as you make decisions as to care and comfort. Yes, even when to give antibiotics—appropriate for comfort but not if it is just to prolong life. A bit about you—could you take one of those trips you’d hope to enjoy? Perhaps a tour so you can meet other people. If it seems hard to leave your wife that long, is there a friend or relative who would go to visit her in your stead a few times while you are gone, so you can know that her caregivers and that person have matters well in hand. It would be good to hear how you’re doing.

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