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mnitchke
@mnitchke

Posts: 10
Joined: May 25, 2016

Ambiguous Loss

Posted by @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.

REPLY

Hello @mnitchke Nice to e-meet you here, but not under such difficult circumstances. I am Scott and my mother-in-law suffered from dementia for many, many years. Much of what you describe is the disease itself and is not something we can control or change. My wife also fought brain cancer for over 14 years and exhibited many dementia-like symptoms. With her, too, I had to accept that the changes and her life and lifestyle were caused by the disease and were totally beyond anyone’s control. It would be nice if we could wish these terrible aspects of disease away, but none of us can. None of us can know what our patient is actually thinking or experiencing either, making it all the tougher as you describe.

This doesn’t make it easier to manage, but we did find some solace in knowing the disease was in control and not us nor our patient. Witnessing a loved one’s decline in chronic disease, and especially dementia, is extremely challenging.

I wish you the very best in this journey and am glad you are here in Connect. I found Connect as I was struggling with the depression and isolation, which often comes hand in hand with caregiving.

One of the great aspects of Connect is that many fellow caregivers have been through a lot and have many hints and helps! So if you have questions don’t hesitate to ask. This is a wonderful, open and helpful group!

Courage, Strength, & Peace

@IndianaScott

Hello @mnitchke Nice to e-meet you here, but not under such difficult circumstances. I am Scott and my mother-in-law suffered from dementia for many, many years. Much of what you describe is the disease itself and is not something we can control or change. My wife also fought brain cancer for over 14 years and exhibited many dementia-like symptoms. With her, too, I had to accept that the changes and her life and lifestyle were caused by the disease and were totally beyond anyone’s control. It would be nice if we could wish these terrible aspects of disease away, but none of us can. None of us can know what our patient is actually thinking or experiencing either, making it all the tougher as you describe.

This doesn’t make it easier to manage, but we did find some solace in knowing the disease was in control and not us nor our patient. Witnessing a loved one’s decline in chronic disease, and especially dementia, is extremely challenging.

I wish you the very best in this journey and am glad you are here in Connect. I found Connect as I was struggling with the depression and isolation, which often comes hand in hand with caregiving.

One of the great aspects of Connect is that many fellow caregivers have been through a lot and have many hints and helps! So if you have questions don’t hesitate to ask. This is a wonderful, open and helpful group!

Courage, Strength, & Peace

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Scott: Many thanks for replying. I needed somewhere to vent. To tell anyone or even no one, just to speak my mind, to get things off my chest so to speak. Now that I no longer care directly for my wife, my role has changed. I am no longer her primary caregiver but now I am her ‘protector ‘ as she has been thrust into a facility. So I go almost every day for at least 2 hours just to watch her, hold her hand, bring her a fresh fruit snack, fresh water, walk with her, bring clean clothes (yes, I wash & iron her stuff) and ultimately to try and connect with her on some simple, simple level and that is where the frustration comes in. Sometimes I just tear up and have to leave or take a short break. I know she’s not coming back, coming home. But my acceptance of this situation is dubious at best. We fought her breast cancer together, her Crohn’s disease together. Now this. There is no fight when it comes to Dementia. It’s roll over and take it until you die! There is no hope, no fight. It breaks my heart. We human beings have been able to overcome so many obstacles over the millennia and still be here. We have treatments for so many diseases and conditions. There are none for Dementia. Friends have disappeared or just don’t call as often if at all. No one wants to visit her and I don’t blame them. There is no such thing as a good visit for either party.

@IndianaScott

Hello @mnitchke Nice to e-meet you here, but not under such difficult circumstances. I am Scott and my mother-in-law suffered from dementia for many, many years. Much of what you describe is the disease itself and is not something we can control or change. My wife also fought brain cancer for over 14 years and exhibited many dementia-like symptoms. With her, too, I had to accept that the changes and her life and lifestyle were caused by the disease and were totally beyond anyone’s control. It would be nice if we could wish these terrible aspects of disease away, but none of us can. None of us can know what our patient is actually thinking or experiencing either, making it all the tougher as you describe.

This doesn’t make it easier to manage, but we did find some solace in knowing the disease was in control and not us nor our patient. Witnessing a loved one’s decline in chronic disease, and especially dementia, is extremely challenging.

I wish you the very best in this journey and am glad you are here in Connect. I found Connect as I was struggling with the depression and isolation, which often comes hand in hand with caregiving.

One of the great aspects of Connect is that many fellow caregivers have been through a lot and have many hints and helps! So if you have questions don’t hesitate to ask. This is a wonderful, open and helpful group!

Courage, Strength, & Peace

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@mnitchke I am so sorry and I know the battles you are fighting and facing None of them are easy, nor are the issues easily answered. Caregiving is hard, but so is stepping back and having someone you love be beyond your help. It is depleting to our souls for sure.

The disappearance of friends and others can be a whole different challenge to overcome. We were astounded at how many simply disappeared from our lives. My wife’s and mine. I came to appreciate Dr. Martin Luther King’s quote “In the end, we will remember not the words of our enemies, but the silence of our friends.”

I applaud and laud your dedication and commitment! Even ironing! Man that is awesome! 🙂 I dropped that chore a bit too quickly I think!

Take good care!

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.

@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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Good evening @mnitchke This is Scott and I guess I was ‘lucky’ (absolutely stupid word to use) my wife was in hospice care. They spoke of the aspects of death, what to expect, and that fact her condition was going to end in death every visit. There were no wizards behind the curtain, no skirting the issue. It was up front and in my face every day.

That said death is as unique and individualized as a disease is within a person’s body. There was no time frame, no map, no guesstimate as to what or when. Yes she ate less, the body needs far fewer calories and has to focus on the critical uses of energy for the heart and lungs and brain. Sleep more — yes my wife did. But she was only one person out of many.

In my wife’s case to be honest her death was horrific. She didn’t eat for 56 — yes 56 days! Longer than any patient ever in our hospice program. She drank nothing for the last 12 days. Also longer than anyone had gone before.

No one knows and I understand medical professionals’ reluctance to guess at what will happen. I heard from nurses about folks who got very angry if their patient lived longer than someone guessed or shorter. It is an unwinnable proposition for the medical personnel. Plus it is ever worse on the patient (if they are cognizant) and the caregiver and family members.

I know in our society we expect medicine to be a total science and we want a pill or something that will act in an absolute manner. It is not so. There is still much that is unknown in life as well as in death. In health and certainly in sickness.

I realize you said you were signing off, but I offer my experiences here anyway.

Peace and courage!

To Scott: Thank you for those words. They will help me starting today to get through this nightmare.

@mnitchke

To Scott: Thank you for those words. They will help me starting today to get through this nightmare.

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and take one day at a time. Only the Higher Power (God) can predict what will happen today and in the future. Just deal with one minute, one hour, one day as AA says and know that we are all here for you.

Ruth

Think what a better world it would be if we all, the whole world, had cookies and milk about three o’clock every afternoon and then lay down on our blankets for a nap.
–Barbara Jordan

Ruth, Barb: You both are so supportive, I can tell. I don’t share the belief that a higher power (i.e. God) will interfere with our lives but rather let happen what can and will happen. Moving on, so today I went with a new refreshed attitude to see my wife to give her her lunch ( it’s minced) and within about 40-45 minutes I had to leave. I could not stay any longer. First, my wife was again not allowing me to feed her. (She needs to be fed but can drink on her own). Then her table mate who should not be at the same table, eats like an animal, makes sounds like an animal and she grabs food with bare hands, shoves it in her mouth except for what falls all over the place. Then her other other table mate, an Italian lady sobs, cries, whines, screams, upsets the table etc. etc. On top of that my wife is up/down many, many times, either attempting to leave the dining room or just taking a few steps, then sitting back down again, and on and on it goes. The only stable person is a man, former Parson who seems to enjoy watching the scenes unfold. He and I seem to connect through eye contact. So with food flying everywhere, screaming, yelling, on 2 sides of the table, plus one trying to leave, I had had enough. I am civilized-this is not rational behavior (I know that) but my being cannot sit there and say everything is all right, because it isn’t! I left in a terrible state, upset, angry, vowing never to come back to give lunch to my wife again, and I won’t. I need my sanity. Judge me if you will and I won’t blame you. I think certain people are better at caregiving under these circumstances. The PSW’s here are doing the best they can. I cannot match their commitment, their dedication, and the care they constantly deliver to patients.

@mnitchke

Ruth, Barb: You both are so supportive, I can tell. I don’t share the belief that a higher power (i.e. God) will interfere with our lives but rather let happen what can and will happen. Moving on, so today I went with a new refreshed attitude to see my wife to give her her lunch ( it’s minced) and within about 40-45 minutes I had to leave. I could not stay any longer. First, my wife was again not allowing me to feed her. (She needs to be fed but can drink on her own). Then her table mate who should not be at the same table, eats like an animal, makes sounds like an animal and she grabs food with bare hands, shoves it in her mouth except for what falls all over the place. Then her other other table mate, an Italian lady sobs, cries, whines, screams, upsets the table etc. etc. On top of that my wife is up/down many, many times, either attempting to leave the dining room or just taking a few steps, then sitting back down again, and on and on it goes. The only stable person is a man, former Parson who seems to enjoy watching the scenes unfold. He and I seem to connect through eye contact. So with food flying everywhere, screaming, yelling, on 2 sides of the table, plus one trying to leave, I had had enough. I am civilized-this is not rational behavior (I know that) but my being cannot sit there and say everything is all right, because it isn’t! I left in a terrible state, upset, angry, vowing never to come back to give lunch to my wife again, and I won’t. I need my sanity. Judge me if you will and I won’t blame you. I think certain people are better at caregiving under these circumstances. The PSW’s here are doing the best they can. I cannot match their commitment, their dedication, and the care they constantly deliver to patients.

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@mnitchke No one here is going to blame you for anything. We each do what we can in these circumstances and dementia or any mental deficiency can be agonizing to witness in a loved one, let alone others we do not know.

The only thing that helped me as my wife lost her cognitive abilities and changed into many different ‘people’ during her war was to remember it was not the person, but the disease I was witnessing. It didn’t make it better or easier, but it helped me to look beyond the outward manifestations of the disease and focus on the soul of my wife.

Peace and strength!

@mnitchke Is there a reason you have to expose yourself and your wife to this intolerable community eating circus? Would it be possible to prepare a “picnic” to be taken with you? Could you have the meal in an outside area, her room or other semi-private area?

@gaybinator

@mnitchke Is there a reason you have to expose yourself and your wife to this intolerable community eating circus? Would it be possible to prepare a “picnic” to be taken with you? Could you have the meal in an outside area, her room or other semi-private area?

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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.

@mnitchke

To Scott: Thank you for those words. They will help me starting today to get through this nightmare.

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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

@mnitchke

To Scott: Thank you for those words. They will help me starting today to get through this nightmare.

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

@mnitchke

Ruth, Barb: You both are so supportive, I can tell. I don’t share the belief that a higher power (i.e. God) will interfere with our lives but rather let happen what can and will happen. Moving on, so today I went with a new refreshed attitude to see my wife to give her her lunch ( it’s minced) and within about 40-45 minutes I had to leave. I could not stay any longer. First, my wife was again not allowing me to feed her. (She needs to be fed but can drink on her own). Then her table mate who should not be at the same table, eats like an animal, makes sounds like an animal and she grabs food with bare hands, shoves it in her mouth except for what falls all over the place. Then her other other table mate, an Italian lady sobs, cries, whines, screams, upsets the table etc. etc. On top of that my wife is up/down many, many times, either attempting to leave the dining room or just taking a few steps, then sitting back down again, and on and on it goes. The only stable person is a man, former Parson who seems to enjoy watching the scenes unfold. He and I seem to connect through eye contact. So with food flying everywhere, screaming, yelling, on 2 sides of the table, plus one trying to leave, I had had enough. I am civilized-this is not rational behavior (I know that) but my being cannot sit there and say everything is all right, because it isn’t! I left in a terrible state, upset, angry, vowing never to come back to give lunch to my wife again, and I won’t. I need my sanity. Judge me if you will and I won’t blame you. I think certain people are better at caregiving under these circumstances. The PSW’s here are doing the best they can. I cannot match their commitment, their dedication, and the care they constantly deliver to patients.

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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?

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