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???
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.
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.
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.
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.
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.
Is Dad on Hospice Care? If so, maybe the hospice nurse, social worker, and/or chaplain could meet with her.
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.