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Cindy; As I've said in the past, my mom would have been dead three times over were she not in NH! If she were at my home, she'd be bored, anxious, afraid she was being a burden, and she'd have pneumonia and I wouldn't know it! Let me tell you a story. My grandma lived with us when we were young. she was in relatively good health except for having a broken hip and poor cirucluaiton. Mom was home with my younger brother, grandma would occasionally go to my aunt's so my mom could catch her breath, change of scene for grandma too. She did NOT have dementia. All worked out except that grandma was ALWAYS cold and my dad would blow up because the AC wouldn't be on in the summer when we got home. So, younger brother brings home the flu from school. Grandma catches it. Mom does not initially realize that grandma is sick because Grandma doesn't complain, no one is doing regular blood work or listening to her chest with a stethescope. Grandma goes to hospital and dies a fairly horrible death from gangrene (because aunt is the one taking care of gram's feet, not a podiatrist every 6 weeks like in NH). Anyway, that's my story of why my mother, post stroke, post hip surgery, post CHF, with vascular dementia is in a NH getting professional care. Dementia especially, is not to be dealt with by amateurs.
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Thanks for the advice bookluv...Unfortunately we live in another state than my family and I have no siblings my only sibling passed away..I'm talking about my kids but mainly their spouses...my boyfriend told me about the same thing..but we are looking gor a nursing home and I am going to get grief over it..he said tell them while she was with us she got the best care possible and we were told that by the profesdionals..but it is to much for one person..we are putting her in the best place we can get for the money..We would love to put her in a better place do if you all want to chip in x amount of dollars we will do that
he said watch how fast you see tail lights going out. the driveway..We r doing the best we can thats all we can do...as much as I complained about my boyfriend in my last post ..4 am he came into the living room andvtold me to go to bed and he would listen for mom..but I didnt..I'm use to the couch now..in fact maybe someone can help me...he bought a beautiful home and we moved here in june from a diffferent state.my mom moved with us a coupke weeks later she went downhill immediately..so all our plans changed..we planned on splitting our time between states and he could hunt where we camefrom..not fair his life has changed so much..I'm thinking about getting an apartment and moving mom and me out of his house so he can get on with his life...we really haven't even had a chance to enjoy the home..but I feel he needs to have his freedom to move on...He will soon be 65 he shouldn't have these burdens on him..He hardly knew my mom when she moved here..I don't know if I'm thinking rationally or not..we r looking for a nursing home but that vould be awhile..take care all....
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Cindy, the next time visitors give you that look that you're a horrible person, just turn the tables on them. Tell them that you're too busy with other caregiving duties, work, housework, meals, laundry, etc... So, instead of looking at me with judgement, why don't you come visit once a week for 2 hours and help mom with her 'list'. This will greatly free me to do more on hands care with mom. I would greatly appreciate your help! ... And watch them run the opposite direction.... It's one thing to condemn others, but it's totally different if you're expected to help. FYI, it took me years to finally do that - with my siblings.
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Hi friends..hope all is going well for u all...I guess I just need to vent today..Having a feel bad for me day...I'm just so tired all I wantto do is have a good cry...but dont want my mom to know and my boyfriend. just says I need to toughen up when I cry..a nice hug would even be nice....thats not him either...my sons came for momd bday yesterday..we live 10 hours away so that was nice...but than my mom complains to them about what I dont do...she wanted to know where the list she gave me of things she wanted..she told them I didnt get her stuff...I did get her some but I gave it to her for her bday so she hadnt got them yet..i just forgot her spice candy..I have tried to tell her when I go out I only have an hour or so to do what I have to do..cant leave her long with my boyfriend...I get upset because these people that come in and have the pleasure of being able to pamper her while looking at me like I'm horrible because I only have so much time in my day..they dont get I'm TIRED...No need to respond..I'm just venting...You all have a good day....
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ba8alou, when you posted here how your mom called you to tell you where her pain was, my very first thoughts were that when she's in pain, she turned to someone she trusted. You. Family bond is strong. Yes, she could have told staff but... they are not you, someone she trusts. Store this memory and treasure it.
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ba8balou ((((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))
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ba8alou, ahhhh a good night sleep... I always felt that if a Caregiver isn't getting the required amount of sleep that something needs to change.

I wonder when a loved one, be it a parents or a spouse, is now in a continuing care facility, if we go through the *are we doing enough for them* phase?
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I had to laugh a bit the other day. When I emailed the wonderful news to rest of the family that mom had gotten staff to call me and that she identified pain as being in her back, my sil, who I love, who visits mom several times a week after work, as I cannot (yes, jealous on several levels, am i) asked, why couldn't the staff get that out of her or figure that out? Great question, except that it's taken ME two weeks to get to this point. Just venting, don't need answers, because there are none. I'm just having a pity party tonight. I'll get some sleep and solve some problems in the morning.
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Thanks for the pat on the back! I really appreciate it. What terrifies me is that her sister, who was the "delicate" one in the family, lived to be nearly 97. this is just so heartbreaking. For me at least. Hard to gauge her mental state.
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you are a good daughter :-) and a blessing to your mom
you are making this part of her life as good as it can be!
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(Sigh). I visited Mom today. She's having such difficulties talking and is so frustrated by that. I gave her two good neck massages, wheeled her out to the lobby to show her where they are painting. We got to look out into the garden and saw two cardinals. Back to her room. I try to come for my weekly visit with an hour or so of "material" stories about my grandson, my job, family gossip, books I'm reading. It's exhausting, but I can only imagine how much more terrible it is to be in her shoes right now. I'm just so frustrated and sad.
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Thanks! She can't dial a phone anymore, but she can point to the placcard that says "call my daughter"
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Wow, your mom actually called you to tell you where she's hurting. That is great because it helps to cut down the pain instead of guessing. Good for her! {HUGS} to you both.
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Cindy; there will be plenty to do once she's in a nursing home, believe me! It's just that you'll be dealing with a full deck of cards and a good's night sleep. It makes for better problem solving skills! We all feel guilty about something, but try to let it go. Your mom needs three shifts of caregivers right now, not one worn out daughter!
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Thank you Blannie...I just reread my comment...I'm more tired than I thought..with the bad spelling and all...And she doesnt have bed bugs...lol...Don't even know where that came from....all kidding aside this caregiving is tough...Wouldn't wish this on anybody for so many reasons...Take care all and stay strong..I'm so glad I found this sight..I was afraid I was the only person having these feelings.
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My vent for the day: got a scary call at work today (gave mom card that says "please call my daughter" with my cell number and she used it! She was in tears, saying that she was in terrible pain. But she was able to tell me that the pain was in her lower back! Yay!. I ascertained that she HAD asked for more pain meds and had been given them, but was able to tell the nurse where the pain was. The nurse was jumping up and down on the other end of the phone, because now they can do a lidocaine patch on the area where the compressed disc is. So I called just now, mom is happy as a clam, no, no pain, she's not sure if she has a pain patch, but everything is hunky dory right now!
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Cindy, get your mom into the NH and don't feel bad. You've done your very best and are to be commended. But you have a life too and it's not going to help your mom if you collapse from fatigue (either mental or physical). Hang in there...this is a marathon, not a sprint.
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Sorry wasn't done with my post whem I accidentally sent it..I am the only care giver and I have to say it is very trying and tiring..I have to be alert 24/7 because she doesn't sleep well even with meds..I am now looking for a nh for her and feel terrible about it..But I just can't do it..She has problems with her bowels getting impacted and I can't do what the nurses do for that..So she suffers until they can get here..At times she is demanding..Last night I went in her room and said mom do you need anything I'm going to take a shower..She said no..I was just getting ready to get in the shower and my boyfriend knowcked on the door and said your mom is yelling for you..(He is not a care giver//But great moral support) So I got dressed again and went to her room..I said what mom..She said can you give e that deck of cards..I said really mom..I just tole you I was going to take a shower..She said I know, I'm sorry..I find myself getting irritable with her and I don' want to..But I get tired..I feel if she is in a nh we will have more quality time together..I'm to tired from taking care of her to really spend much quality time with her..Does or did anyone else have the guilt feelings..I admire all of you..This is tough..I took care of my husband when he had cancer..Two years ago..But his went very fast..seven weeks from the day he was diagnosed he passed away..My mother was diagnosed two months before him and she is 83 years old..It is so hard especially whe she is having a bad day..Thanks all..Take care
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Just read the posts on here..My mom is getting hospice care..It has been about 3 and a half months..I am taking care of her at home..My boyfriebd bought a new house in another state from where we lived..After a couple of weeks my mom came to live with us..At the tie she was doing pretty good..But when she moved in with us it all changed..She started not sleeping at night and taking all her clothes off all the time..It was awful..The hospice nurse ended up admitting her to the in patient facility to try to get he meds adjusted and to give me time to rest..She did start to do better..Than she got out of bed one night and she fell and broke her hip..another trip to the hospice facility for 2 weeks..So many ime they told us they didn't think she was going to last more than a couple of days..she is now home..has been for a couple of weeks..bug bed ridden..I am the only caregiver and i
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Mom is getting the best of care in the best of hands. Good time for some visits that might be overdue. These might be last days or it might be a little while. Your comment about dogs and cats intrigued me - we did bascially "cat hospice" for a couple of ours because they were such people cats and though ill seemed to still get something out of life, even if it was just the pleasure of beeing fussed over and licking up the tuna juice from a saucer even if they could not really eat the solid food...but a couple were really ill and hurting and we did take them to the vet. I say let the person tell you what their quality of life is like - for most of us, just being alive is worth quite a bit of inconvenience and even some discomforts - and get medication and any other interventions enough to be as comfortable as they want.

It is a hard situation when it comes and you see it coming, but you are making the best that can be made out of it and will have good things to remember when it is all over.
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Thanks again to you all! Such wisdom and comfort here! Veronica, thanks for the thumbs up on the pacemaker...I was initially against it but we left it in mom's hands and she wanted it. Saw mom today, she's not remembering that she can ask for more pain meds so I wrote that down on an index card. Also, she's convinced "something" is wrong...nothing except 5 days in bed and being 91. Thanks again. I'm going "vamp until ready" as we say in music and figure out the bigger questions after my brother cones back and we see pulmonologist for followup appointment. Normally I wouldn't do an outside followup, but this will enable us to get an office appointment for a small chest tap if one is needed.
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ba8alou, you are writing for many of us as we watch our parents live out their last years. Things happen one by one, and the only thing we can do is help make it easier. I don't have any words to help, but I am reading your thread with you. Thank you for posting it.
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Once Hospice comes in to take care of a patient the N/H looses some of it's funding for that patient from Medicare/Medicaid. In our hospice it was merely a support and supervisory role as the staff still did the day to day care and often refused to have hospice aids care for the patients, ie go in to bathe and spend an exclusive hour with the patient. Some N/H refuse to allow hospice care which they can do. there has to be a contract in existence between the hospice and NH which is something to consider when choosing a NH. They will do their own version of palliative and end of life care

Capt I wish we could say the drs are applying (proper) attention to tests and making informed decisions. I was recently diagnosed with COPD and Asthma. never had a symptom of either so did not want to use the steroid inhaler that was prescribed twice daily. This was on the basis of a CT scan and seperate breathing tests. I then spent hours on the computer and finally discovered that one of my meds (Sotolol which is essential to control my Afib which I really do have.) causes constriction of the tiny air spaces in the lungs hence the test results the drs made their diagnosis on.
Sorry i went off subject but wanted to respond to some of the comments.
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When we were deciding about hospice for our mother, we wanted to have NH staff in the meeting. They declined. They said the decision was always the family's to make and they never wanted to influence it.
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good idea jeanne. might be a little conflict of interest there .
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I don't think NH is the appropriate decision-maker regarding hospice. Call hospice yourself for an evaluation.
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Just sending a hug to you. This is hard. You are doing well.
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Right you are, Captain. It's our strength that gives them theirs...
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it is indeed a very nervy time . you have to come to terms with yourself that death is imminent , then disconnect from your own emotions and walk beside the dying person until the end . they need an anchor , they dont need us overreacting , flipping out or breaking down ..
my mother upon realizing she was shutting down , asked me " how am i going to get out of this one ? "
i told her none of us are going to get out of " it " .
factual , compassionate, a little grim, a lot of love and empathy flowing between us .. very little emotional exchange . business like ..
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When my mom was dying, I was just so glad that my siblings flew over and took over with mom. I just couldn't handle death. The contradictions of my feelings on her dying and the helplessness that we should be doing something to help her live longer. But the worst part was the helplessness. I came on here to AC to get comfort and strength. So, don't hesitate if you feel you need to express yourself. We've been through it and understand where you're coming from. {{{HUGS}}}
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