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Nov 2, 2017 · Ambiguous Loss in Caregivers

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.

Aug 21, 2017 · Ambiguous Loss in Caregivers

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.

Aug 21, 2017 · Ambiguous Loss in Caregivers

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.

Aug 19, 2017 · Ambiguous Loss in Caregivers

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.

Aug 18, 2017 · Ambiguous Loss in Caregivers

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.

Aug 18, 2017 · Ambiguous Loss in Caregivers

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

Aug 17, 2017 · Ambiguous Loss in Caregivers

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.

Aug 17, 2017 · Ambiguous Loss in Caregivers

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.