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My 90 yr old father has been in a nursing home for 11 months now. He is in the late stages of Alzheimer's/Dementia. I took care of him at home for months. He was in another nursing home for several months prior to home care. At this stage of his disease there is little left that the nursing home staff can do other than keep an eye on him (he is a wanderer and spends hours in his wheelchair, going up and down the halls). He is still verbal.
However, he has almost zero short term memory.
So if you were to ask did the nurse come see you today, he will say NO. Did the nurse bring you food today, he may say NO. Did the doctor visit you? NO. Did the nurse check your feet today. NO. A few days ago on the phone I asked him how his breathing is; the nurse and I had been on the phone only TEN minutes earlier because she had given him a breathing treatment and his inhaler and she was asking did I want him to be forced to take oxygen. Shortly after, I talked to him on the phone, asked how is your breathing. Just fine was the reply. Did you get a breathing treatment? NO. Because he doesn't remember.
A very loving, kind, sweet as heck (truly, she is precious!) adult grandchild loves to visit her grandpa (my dad) at least once a week.
However, she normally ends up asking telling me that 'I asked the nurse why are his feet so swollen, he has bruises on his arm, why did he fall, why isn't he eating, why hasn't anyone been in his room to check on him for the past few hours, etc'.
I adore her, love her like my own. But I've told her repeatedly that there isn't much they can now do. He's lost 30 pounds in a year, his body no longer wants to eat or drink, he has lost his balance but still thinks he can sometimes stand up from the wheelchair to walk to the bathroom and stumbles, he can't be watched 24 hours a day. That this is the progression of the disease. That these things happen. That his feet are sore, cracked, swollen because he is non-stop moving or shuffling his feet and refuses to stay in bed to rest or prop up his feet other than when he is sleeping.
She just doesn't get it, and her sweet, kind, very optimistic, loving nature makes her who she is. And she truly adores her grandfather, she does. And it brings her pain to see him decline like this.
I've explained that we must let nature take its course. That although it is painful to see, this is how his body is breaking down due to the Alzheimer's disease.
But now even the nursing home DOA has called and asked me yet again to please alert my dad's visitors that they are doing the best they can and that they are aware of his issues, but to please don't ask the nurses questions they cannot answer or address.
I've just about come to the stage where I feel I must flat out tell her 'quit questioning the nursing home and nurses' care giving or I will have to change the rules where he can no longer have visitors.
Now, having said that, I DO know this nursing home and the nurses are awesome. They call me every few days to update me on his day, anything they have noticed, if he has stumbled, if he did eat that day, they call and talk about anything at anytime. They call if they have questions about his care (he is a DNR). They are GREAT. The nursing home schedules quarterly sit-down meetings with at least 3 staff members to discuss anything, everything, address any concerns or questions.
But frankly, I am getting frustrated and tired of hearing something every time she visits about 'when was the last time you saw/talked to him...did you see his feet, did you notice his speech is now garbled, no one came into his room the entire time I was visiting'. I will say 'yes, I know, his body is breaking down, his feet are cracked and swollen because he won't lay down and rest his feet and he wheels around for HOURS non-stop shuffling his feet to move the wheelchair instead of using his arms to propel the wheelchair, he doesn't want excessive medical measures, he is there to be watched and kept comfortable, if the nurse hears someone visiting him, she normally won't come in because she would interrupt the visit, but you have to remember he is very frail now and we must prepare ourselves for his passing'.
She DOES mean well, she loves him. But I am just getting tired of hearing her voice her concerns after each visit.
She is such a sensitive soul and I love her like a daughter.
Advice, comments???

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Like Countrymouse, I had pictured someone significantly younger. Apparently I, too, jumped to a conclusion. Sorry. I always try to give someone the benefit of doubt, but you just may have to tell her "it is what it is". You've been more than reasonable with the situation. Thanks for the illumination. Good luck!
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I had in mind an innocent little thing in her twenties - that'll teach me to jump to conclusions, won't it?! But a grown woman of fiftyish: then it's not naïvety, it's almost denial; as though she feels that if everybody runs around enough and tries hard enough her grandfather will be restored to full working order. Can you tell her bluntly but humorously that at this rate she will drive not only the NH staff but also you to drink???
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countrymouse, we have been on multiple visits together, the 1st nursing home, then when she would visit when I had him home, then this at this nursing home. I try to make sure I update her on anything that happens (cough, cold, breathing treatment, bumped his arm, whatever). She is just heart broken and has lost so many people in her life already at age almost 50, I know this is hard on her to let go and let God.
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jeannegibbs, thank you for your post. He is not yet in Hospice, still nursing home. Other than COPD, he is in relatively good health. No diseases that are fatal, no strokes, heart problems, no high blood pressure, no cholesterol problems. Just very bad feet from constant shuffling in the wheelchair, almost zero short term memory, can't follow even a cartoon theme line yet alone follow what is happening in a sitcom or a movie, won't listen to music, can read most of the words aloud but no idea what he is saying 30 seconds later. he can read words in the same Readers Digest day after day and never be able to tell you what he read. trouble breathing. He only takes 3 meds a day, baby aspirin, 1 med for his breathing, 1 for Ativan coz he is hyper-active. But every week you can see his body breaking down in speech, balance, eating, memory. Which is all ALZ related. But nothing that his doctor would diagnose as 'imminent death within a set time period' so he doesn't qualify for Hospice at this point. Sometimes I think it would be kinder, sorry, but sometimes I do.
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Does grandchild understand dementia? Does she understand that the answer she gets from GPA may not be the fact?

You might have her watch some Teepa Snow videos you might direct her to the excellent articles on this website. She sounds like a fix - it type. We were all once fix - it types, until we learned better.
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txcamper, again thank you for another post. Niece is almost 50 (just 13 yrs younger than me but I still think of her like my own child). I have had my share of medical hands-on with family members but this is my first time with an ALZ patient full time and boy, have I learned a lot. And yes, family will swear that if you bring mom or dad home they will be there if you ask, they will be right there to spell you, to lend a hand, to give assistance....and how many times can we honestly say that this turns out to be true? I think she sees him more now that he is in the nursing home than when he was at home with me taking 24 7 care of him. I have found that in my family and from what I read here, promises will be made, but there will usually be ONE caregiver and you MAY get 2 or 4 hours here or there every few weeks. Just enuf time to drive home, take a bath in your own home (without my dad beating on the bathroom door and screaming my name over and over, insisting I let him in) and cry for a few hours, then head back to care giving.
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tryingmybest, she honestly doesn't try to come across as criticism, I just...I don't know....sigh.....she means it for good, yet at times I feel she is implying that I either don't see him enuf or pay enuf attention...or that I don't care...or that I am not observant...or maybe she wants me to see that she IS seeing him and the difficulties he's living....It would break my heart to have to come to the decision to bar visitors. As for my parent, he wouldn't remember if she came by or not. But she would miss the contact with him. She's lost both her parents and other close loved ones. Maybe this is her only way to keep him close. But at times I just want to say something harsh....maybe it is just ME.....sigh....thank you so much
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txcamper, he does wear socks and rubber-soled house shoes all the time (the kind that look like loafers but are softer), but he is non-stop for hours and never rests, up and down the halls in his wheelchair for hours and it puts a lot of stress on his feet. And he will insist on sleeping in socks and his feet never get a chance to get any air or 'breathe'. With his age, poor circulation due to being confined in a wheelchair and due to his 'shuffling' gait to propel the wheelchair, he tears his feet up. he is diagnosed with hyper-active and this is with Ativan twice a day (higher dosage in the evenings), he just won't sit still. This is also one of the main reasons we had to put him back into the nursing home; he wanted pushed from room to room to room or would push himself for hours thru the house, injuring himself. And you are SO right, she is a sweetie pie and is one of the very few who take time to visit, something I've noticed that is sorely lacking for so many.
That in itself is precious; one big reason I hesitate to even speak to her yet again.
I have to try to stay more clinical than emotional because if I let my emotions surface, I become a big blubbering emotional useless something that can't maintain 2 homes, bills, paperwork, calls, vehicles, my self, my work (just retired last month), my own children and grand children, my husband, pets....I have to try to shut down the emotions when I need to so I can really pay attention to what he needs versus what I want.
After taking years to care for my mom who died of cancer and then taking care of my older sister for about 10 years who died a long, painful death from a multitude of cancer issues and other medical issues, then my father in law for about 6 months as he died to botched surgeries...I have found that I have to distance myself somewhat to achieve what I need to do.
However, once alone in those very rare times, perhaps in the shower, I can vent and cry and be an emotional mess.
then it is time to compose myself yet again.
Her questions sometimes feel like a nuisance, I won't lie, but my love for her overshadows that. I just wish there was some way I could get her to understand that there is really nothing left to do.
Perhaps this is her way of coping, this way she can say that she tried in her own way, to not feel any guilt or misgivings....see, I am learning as I am typing.... (smiling).
Thank you for your advice, it did help.
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It sounds like you are on the money that this grand daughter is having difficulty accepting the inevitability of losing her grandpa. I know you feel you are between a rock and a hard place. You love and understand where your niece is coming from but you know her behavior is causing disruption.

I would weigh the harm that her chronic criticism is doing against what harm could come from keeping her from visiting. Something like that could really damage your relationship with her and it sounds like she is very important to you.

I would certainly nip her in the bud when she starts up. Bring up another subject or maybe even cut the conversation short. You have a good relationship with the staff at the nursing home, tell them to just take what she says with a grain of salt. It's your opinion that matters and you think they are doing a great job.

I wish you luck.
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You know, Kala, you sound like a very patient and caring person. Your niece is learning at a tender age what it takes to be a patient and caring person. You are a terrific role model for her, and I applaud you for understanding that.

Most of us aren't so lucky. We've been thrown into a situation where we have to learn on the job, so to speak. We find that people we figured we could count on - can't be counted on. Some people will do something, but only when asked and only if it's convenient, big sigh, so we hesitate to ask. The younger generation doesn't always "get it" either. So you have the perfect opportunity to nurture her interest in the care of the elderly. She may later decide to become a medical professional herself and would have you to thank.
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I agree with txcamper that the granddaughter should be invited to the quarterly meetings. I also agree that you should tell her she cannot talk directly with the nursing staff, that one contact person is best. I can imagine how her constant questions are a nuisance. My sister and I actually went thru the same thing with my mom who is in a nursing g home and has Alzheimers/dementia. My sister is the clinical one and I am the emotional one. Finally we figured out that my sister is the better one to talk with the staff and while I care and love my mom I am not as mature as my sister (even tho I am older). Tell the granddaughter ALL of her concerns and questions are valid and answer all you can BUT that she must be more patient and understanding with the process. Remind her she has alot to learn about caring for the elderly. I know I did and I'm still learning. It's hard. We all want to "fix" it.....and the immature don't accept that they cannot. :-(
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Can you go with her on a visit? Then you could talk her through it item by item, as each point that she feels the urge to challenge arises. For the rest of it, I'm so sorry for the distress she is bound to feel until she can accept the reality of your father's decline. She desperately wants it not to be so. It's a terribly sad lesson for her to be learning.

I so admire your concern for her, for your father, and for the staff who are providing his care. You are a model of empathy.
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Expect to listen to a litany of questions and concerns from her after each visit. Not pleasant, but you can do it! Tell her it is OK to talk to you, but it is not OK to talk to the nurses, etc. That the policy is to have one contact person per patient, and you are it. Be firm about that, but let her unload to you. I think your present explanations to her are highly appropriate. For your sake, you might want to shorten them. You don't owe her a complete lesson in caring for the dying each time you talk to her.

Is Dad on Hospice Care? If so, maybe the hospice nurse, social worker, and/or chaplain could meet with her.
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Don't know if this idea would work, have the adult grandchild spend all weekend with her Grandfather if the nursing home has a guest room for visitors.... let her try to feed your Dad breakfast, lunch and dinner and see what a challenge it could be.... let her see see her grandpa saying *no* to things that were done for him just 10 minutes ago.... then and maybe then she will understand what is real life.
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They can't put tennis shoes on him to protect his feet? I would think that bare cracked feet would be an open invitation to infection.

Is he on hospice? Sounds like he is.

Some people are clinical, some people are emotional. Your clinical self can talk until you are blue in the face, but your emotional niece will never NOT feel the way she feels. Perhaps it would do her good to read what you have written, but if you try to ban her from visiting her grandfather, she will never forgive you. So that, clearly, is not the answer.

Don't necessarily feel you have to defend your decisions or your actions or the actions of the nursing staff. Just love her and tell her to her face how precious she is and how you will all miss him when he's gone. Encourage her to spend as much time as possible with him, so that she can witness, first hand, how he is. The nursing staff know how to deal with relatives and their concerns, perhaps if they explained things to her she would take it better. You know coming from a person of authority.

Since she is a regular visitor and obviously a caring relative (something that seems to be sorely lacking in this world), perhaps she could sit in on one of the caregiver conferences. Just being empowered with some knowledge may help her a lot. I know you are seeing her as an aggravation at times, but she sounds like she truly cares, not just trying to make your life miserable! Sometimes people just don't like to be left out of the loop, either.

To sum up, to you her questions are becoming a nuisance. To her they are very valid concerns. Difference of opinion is all. Good luck with whatever you decide to do.
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I would let her read your post. Sometimes a few written words can make all the difference. Just print it out and tell her it is being given to her in love. Sometimes it seems this aging of grandparents is harder on the grandchildren!
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