How do I deal with medical issues that may be happening with my father's late stage dementia?

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He has had dementia for 8 years and is now having lots of difficulty with communicating. He lives at home with my and my mother, now has trouble walking and complains (sometimes) of a backache and leg pain. He's been receiving in-home hospice services for over 4 months and we like the staff and feel that they are providing the best possible care aimed at his comfort. My extended family seems to feel that I should be taking my father to his former medical doctor to get x-rays on his back and legs. They even suggest that his backache is a result of kidney failure. I am torn here as I want my dad to be comfortable, but my mother and I realize that the dementia will never improve. Do we make him go through the testing at a medical facility? He can barely walk 50 feet. We are really torn as my relatives seem to think we are not doing enough. Any thoughts are really appreciated.

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Wanda,

It sounds like you and your mom have your plates full. You definitely don't need to be hearing from the peanut gallery either.

Since your dad is on hospice is he even able to see a Dr? Some hospice providers allow Dr.' and ER visits and some don't.

Your dad's complaints of a sore back and pain in his legs could just be related to sitting so much. It sounds like a family member Googled "back pain" and saw that it could be associated with the kidneys and ran with it. If your dad sits for long periods of time that could explain his back ache and leg pain upon standing. Ask your dad's hospice nurse what she thinks. If it were my dad and he had advanced dementia and complained (sometimes) of back pain and leg pain I'd give him ibuprofen and wait and see if it got worse over time. If your dad has low mobility he's going to have aches and pains. Only you and your mom can know if there's something serious going on with your dad's back ache and leg pain.

Your relatives aren't there. They're not caring for your dad. Their uninformed and unwelcome opinions are just going to make things more difficult for you and your mom. I would try to temper what you tell them from now on. I'm not saying lie to them because it sounds like they care about your dad but give them just a very basic sketch of how your dad is doing and focus on the positive such as he had a good day yesterday and was able to sit outside for a while; he enjoyed his dinner last night and ate quite a bit; hospice says he's doing as well as can be expected.

I work in hospice and I cared for both of my parents before they died and relatives always seem to have a million ideas about how to care for the person even though they're not a part of the care team. Sometimes they're just trying to be helpful, sometimes they're trying to be intrusive. They may love your dad very much and want what's best for him. Or they may feel left out and want to bulldoze their way in. Regardless, it's always stressful on the caregivers who are actually doing the caring like you and your mom.

Hold back on what you tell them about your dad, see if that makes things a little easier for you.
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"Dad is on hospice now. We're not doing any further testing because we wouldn't be accepting treatment for anything that was found. If he has pain, we treat the pain".
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You are doing everything right. Always be upfront with Hospice about your concerns about your Dad, and they will advise as well as treat his pain, as his comfort should be their top priority.

Ibuprofen or Tylenol does work, but sometimes they may need to bring in the heavy artillery, ie: narcotic pain meds, which can be given "as needed" and adjusted over time.

The well meaning relatives may not know all of the in's and outs of Hospice Care, so perhaps a brief education of their involvement would be helpful. Tell them that at this point, you are not looking to diagnose any complaint that arises, or he would be at the Dr's office every week. That the whole point of Hospice is end of life care, keeping him home and comfortable, and that the Hospice team is on top of it, and treating his pain as it develops, and that there are adjustments being made on the regular.

Tell your relatives that your Dad is not going to be "getting better", that care and comfort is the main goal, and that you are happy with their support.

Tell the family that if they wish to be helpful, that you would appreciate them bringing in a casserole or two, and helping by running errands, doing your shopping or your laundry. Keeping your Dad company and visiting is real nice too, but that you have all of his health care needs attended to by the Hospice team, head up by the Hospice Dr's, and Nursing team. Tell them you appreciate all of their concerns, but the position of end of life Hospice care is Not to look for additional diagnosis, but to treat his pain and comfort issues, and these things take careful consideration, constant monitoring, frequent adjustments.

If the well meaning relatives are not consistent hands on caregivers in this case, then they do not fully understand how difficult it is to be the actual hands on caregiver.

Taking care of Hospice patient at home is a lot of hard work. A lot of people think that Hospice is at the bedside continually, but nothing is further from the truth. If you are the person doing the caregiving, your are forever tired, and trying to hold things together.

Your family could be doing a whole list of things to help you out, but should leave the caregiving tasks up to you and Hospice. I suggest writing lists, to keep them busy and helping out if they are up for it!

Good luck and God bless! I'm sure that your Dad appreciates everything you are doing for him!
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Thank you, Eyerishlass. I really needed to get some validation here. You are exactly on point. The hospice team has advised to keep giving motrin and they agree, that yes, pain is probably due to sitting for long periods of time. Families can be tough - they think they are helping but they are making matters worse. Again, thanks for sharing your thoughts.
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The advances in medicine in the last century have been astounding. We have seen cures for many dreaded diseases and have contained many others that were deemed certain death if contracted. We've come a long way and have improved the quality and quantity of life for a lot of people.

That being said, IMO, we have also pushed the bar TOO far when it comes to prolonging life at ANY cost. Very old people are tired and some would prefer to "check out quietly" but are kept alive by 'modern medicine'. Their quality is minimal but they have quantity!

I had an elderly patient who had an elderly friend who took many medicines for multiple health conditions. Then she was told she had macular degeneration and would be blind within a year. That was the final straw. She decided to take matters into her own hands. She quit taking ALL of her medications (that kept her alive), knowing full well she would die without them. And that's exactly what happened. Within 5 months of stopping her meds, she passed away, the way SHE wanted to, still being able to see.

We are ignoring Mother Nature. There comes a time to let go and NOT do all the heroic stuff. It's time for nature to take its course.
There is nothing wrong for not pursuing an aggressive round of tests, diagnostic procedures and the like. When the tests and treatments are worse than the problem, we have gone too far. Let your Dad be. Medicate him when necessary. He has been given Hospice, so his doctor believes that his time may be limited. Let him enjoy himself as best he can in the time he has, without being poked and prodded. If the above suggestions don't work to quiet your family, tell them that "this is how Dad wanted it." They can't argue with that.

Just my 2 cents. Good luck and God bless.
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Your relatives may have been reading nasty stories in the press about people with dementia being denied basic medical attention. It happens, sadly; but not so much in a home setting with hospice services regularly attending. The set-up you and your mother have provided for your father is the ideal, focused on entirely on your father's wellbeing and comfort, ensuring that everything possible is being done for him without subjecting him to invasive, onerous and pointless investigations.

You're right - the family does think they're helping, the trouble is they can't realistically know what they're talking about. You sound as if you will do better than I could have done at explaining to them patiently that while you appreciate their concern their input is unhelpful to your father and stressful for you and your mother.
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HIs primary care provider can order a physician Housecalls Doctor (by specialty referral authorization) to visit your Dad (Maybe hospice does this?). A portable x-ray is a very simple procedure to do at home. My mom (96) has had portable xrays. Pain management should be part of hospice care. Comfort is part of hospice care. (Maybe investigate other hospice care services - ask PCP). As for walking, my mother made it to early 90's walking on her own (with the normal repulsion to using a walker or a wheelchair) but at her current age, she is now permanently in a wheelchair because, let's face it, there is a time when "walking" is not an option no matter HOW MUCH the patient wants to walk; they fall everywhere (out of bed, in the bathroom, et al), and with falling comes seriously bad consequences. I managed Los Angeles Nephrology (kidney disease) offices for 13 years - a simple blood test (Renal panel: BUN, Creatinine) is the indicator for kidney function. Are blood tests being regularly ordered? The process of "ruling out" a condition is very valuable. It is very difficult to get the elderly (dementia) to the doctor; I did it for years with my mother. In her 95th year I had two-level spine fusion, so now I can't. But with her recent optic nerve "stroke" she has lost her vision. Moving her around is very tough on her too. At this point services come to her at MemoryCare. I just have initiated regular dental cleanings that come to her. Some Assisted Living residences are WAY better than others at ordering and supplying healthcare delivery to their residents. (Ours is great.) I realize he is at home and I'm sure that is exactly where he wants to be. My mom was at home (with our buying a condo next door to her) until age 91. At that point her care escalated beyond our "home capabilities". She is in an excellent Memorycare and I'm of course still a daily part of her life and completely in charge of everything for her. It works, but it is hard work like all of you know.
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Thank you for these responses. I am very comforted by them and will heed your advice. My mother and I truly need the support in the form of errands and sitting with my dad to relieve my mom. We are trusting the judgment of the hospice group and pray that my dad is as comfortable as he can be. Thanks again.
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The purpose of hospice is to keep the patient comfortable. They have excellentnurses and doctors on staff who are, no doubt, keeping an eye on things. If you have concerns about kidneys, ask your hospice nurse, who will probably consult with the doctor. If you are noticing pain in your dad, consult with your nurse. That's what they are there for. He is probably getting better care now than running him to a different doctor when anything goes wrong. My husband has been a Nader the care of hospice for over a year and is improving daily. I attribute that to the excellent care he is getting and the fact that he is no longer being pumped full of drugs. Best of luck to you. It is a hard road. And not knowing what to do is the worst.
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I am at the same point as BarbBrooklyn with my mom. It is really tough but I feel it is the right decision.
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