New to forum my dad was diagnosed with advanced dementia 5 months ago

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My dad was diagnosed with advanced dementia, he is now living with me. After he was diagnosed the doctor put him on memory medicine said we may see a difference within six months or we may not, feels like the doctor has washed her hands of us, not a word from her since.

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  • Posted

    Oh dear, I feel very sorry for both your father and yourself. Your post is very brief. I've worked in Aged Care, dementia specific aged care facilities all my life, as I had three jobs, so I could maintain my Emergency Department or Acute skills, hemodialysis, but only because I attended to my mothers peritoneal and hemodialysis at home, but my love was Aged Care. 

    You havent really given enough information for me to give you the best advice. It would be good to know the following:

    - How old is your dad?

    - How long has he had dementia?

    - Has he been assessed by an ACAT team?

    -Have you been referred to a gerontologist? (Specialises in aged care only, assist in managing dementia related problems that will occur as your dads dementia deteriorates)

    - Is your dad at home? Or in a facility?

    - If he's in the family home, are you getting community health nurses to come in and. Regularly monitor him, and whoever he is living with?

    - What other conditions he has?

    - Is he ambulance? Or does he have a history of falls?

    - Is he a typical " sundowner"? As many dementia patients exhibit what we call sun downing behaviours. They can be quite manageable all day, and as soon as late afternoon, evening, his behaviours change, and he may start continual pacing, become very aggressive, even though they have always been the most kind hearted, gentle temperamental history, often, they become very aggressive, and wandering (and they can do this for days without sleep), so it's important that if he is at home, to ensure his career gets a break, and by this stage, he really needs a dementia specific facility, with 24/7 supervision. Their entire personality can change, to the point you don't know who this person is.

    The dementia specific facilities nowadays are great. They have bed alarms, restraints, and yes, restraints are a very touchy subject, as even putting the bed rails up can be a form of restraint! But if, for eg: dad is a wanderer, won't sit still, for their sake (as they fatigue easily and become unsteady on their feet), need to be restrained, Even if it's just long enough for him to remain seated so he doesn't walk off and forget to eat, which as we know, increases risk of falls etc, as they at this stage, don't even recognise or identify food and what to do with it, therefore require a staff to fully assist with meals and can alert the RN in charge, who should then initiate a fluid and food intake chart for days  and then review the chart and a dietician will review the patient  order supplements etc or and it's usually a foam padded lap sash that allows the staff to make sure he is seated so he can finish his meal, or if being fed by staff, he is seated, so he doesn't get up and continue wandering and then looses weight, becomes more frail etc. They also have concave mattresses, and even these are classed as restraints. But personally, I've seen families flat outright refuse to sign a restraint form - and they wouldn't not ask you to sign a restraint form, if they did not feel it was necessary to keep him safe. I've seen families refuse, and the poor old people have had fall after fall after fall, and it's horrific for the patient, the family become angry with staff, and even as nurses, we feel absolutely horrible, especially knowing that by say a recliner chair or a lap restraint could have prevented it as after a while  these residents become like family. But if they are a wanderer, the nurses may have up to 10 patients, and if she's showering someone, cannot supervises him 1:1, so I do advise a restraint. I'd rather my parents be safe and protected, than have a broken hip, or head injury.

    But if you are not happy with your Dr, then go around aged care facilities in your area and just ask if you can look around, and explain that your dad is needing full time care. ASK BOTH STAFF AND RELATIVES QUESTIONS! They will be able to provide you with a Dr who is Aged Care trained, and some facilities have in-house Drs there. But ask them to see the restraints, the mechanical lifters. Ask to see their statistics on wound care and pressure area care. This will help you determines the type of care that particular facility gives. If they have a large bed sore or pressure area care (PAC), then this indicates that the bed bound, and some chair restraint people are not getting 2/24 PAC. A good facility will ensure strict 2/24 PAC. They will check each patient, toilet the ambulant people, and the end stage bed bound patients, will have 2 nurses, who go around, where they will check the patient, if they've been incontinent, then they will wash, dry, and apply a new incontinence aid, then massage barrier, skin protective creams specifically designed for bed bound residents. All bony prominences, such as hips, heels, elbows etc, should be massaged, and using a slide sheet, turn patient onto other side, placing a thinner type pillow between their knees so they don't get a pressure area. Also, watch and listen. [u]There is no excuse for a bed sore these days. And most wounds, skin tears occur as a direct result of staff not adhering to the facilities policy of NO MANUAL HANDLING! 

    They have leg leg protectors as well, for bed bound patients, and all these manual handling aids, are there to protect the residents skin integrity, and themselves. Trust me, I've seen one resident, who was a tiny and extremely fragile resident, and because staff did not use slide sheets, they caused a skin tear from her knee to ankle, THERE IS NL EXCUSE THEAE DAYS FOR ANY BED SORES, PRESSURE AREA WOUNDS THESE DAYS, WITH ALL THE AIDS THEY HAVE AT THEIR DISPOSAL. 

    ?[/u]The more ambulant residents, should be assisted up, and walked to the toilet every two hours, and again, apply some skin barrier cream to their buttock ar etc, and a quick massage, ad ensure that if they are wearing pads, that they apply fresh ones, and their physiotherapists take them for a walk to try to maintain their level of mobility.  Being aged, they are susceptible to many complications, if they do not get enough fluids, they can become constipated. It is usually policy that any resident who has not had a bowel action, must be given a laxative and monitored, and if that hasn't worked, a suppository. Adequate fluids is essential, as constipation and a Urinary Tract infection can (besides the obvious, be painful), will show in even the most non communicative of residents, say for eg: they may have odd behaviours, or are not their "usual" self. 

    But ask family members, and staff, out of the facility, as they will tell you. I always recommend bed alarms, and restraints - if it means it prevents a broken hip or head injury. A good facility will have up to date care plans, remain in contact with families and involve the family in all aspects of their cares, ask to see their nutrition forms and all forms, ie: fluid intake, daily charting of bowel movements, PAC policies, and ask to see if you can see how they work on a resident. Ensure they have a RAO (recreational activity officer), as they run the activities such as bingo, bus trips, help with appointments, provide different types of therapies such as aromatherapy, and live "old time" music. But I always recommend installing a hidden camera - especially with bed bound residents.

    Good luck Wendy, I hope this made it easier for you. I know how hard it is, and how heartbreaking it is. But when you find your best facility, you'll have peace of mind that he's getting quality care and high supervision. Best of luck ????

     

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  • Posted

    It's like when you get old and sick nobody cares anymore. The doctors don't put a lot of time and effort into trying to help the elderly. Why is that? It's like people throw them away. I truely understand. What do you do?

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    • Posted

      I know and I fully agree. They get second rate care, and as an aged care RN ( have worked in a bit of everything over the years), but it is frustrating. For eg, if a patient becomes palliative, they will only prescribe 2.5mg of morphine 4/24, even I felt you argue that's a paediatric dose, this is a 100+kg man here, they just won't increase the dose. And it's wrong,and heartbreaking, as no one in today's society, with the medications available, should have any reason to be in pain. The Dr will say no more than 2.5mg as he has kidney disease, and you argue, THIS MAN IS DYING NOW, WHO GIVES A F*#K ABOUT HIS KIDNEYS, AS HE WILL BE DEAD IN AM, IM WANTING ADEQUATE PAIN RELIEF, AS 2.5mg, really?  My only recommendation is ask the nurses to contact dr and state that as a daughter your upset at his pain levels. Make an appointment with the Dr and argue your point with them, and still if you get nowhere, ask the nurses to switch your dad to a dr who does treat elderly residents pain adequately. It's hard, as the nurses are aware of the poor dosage, but cannot give more than ordered, but the nurses know which Drs are the best. But the squeaky door makes the most noise, so if your loud enough, stubborn and pig headed etc, you will get adequate pain relief, otherwise, if you don't make a stand, sadly, he may be in pain forever, and dementia is cruel enough, without pain. Is his bowels regular? As they can be in incredible pain if constipated! If constipated, their behaviours can change, ie, they may start pacing, or wandering, become aggressive for no apparent reason etc - you will notice a change. Sometimes, if constipation isn't treated properly, they develop literally ROCK hard tennis ball sized plugs of faeces that is like concrete, in which case, they need an X-ray to determine how full the bowel is, and to ensure bowel hasn't twisted etc, and then they will be given large, frequent doses of laxatives and fluids, until they have a bowel motion! Always push fluids and exercise and along with a nutritional diet! Should reduce risks.

      if pain is arthritic related, there are many options, patches, oral pain medications. But don't give up, get loud and angry at the Drs if need be, as you are his only advocate!

      Good luck!

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  • Posted

    That's very disappointing. Is the medication going well? Have you tried taking him to another doctor?

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  • Posted

    I'm so sorry for you and your dad. My dad was diagnosed with mild Dementia by whom, I don't. I can not find it in his medical records although he does get really confused pretty often. Dad is in a Nursing facility so maybe just being away from his home may cause him to be confused. My dad is 86 years old and has many, many health problems. He has a wife believe it or not that decided she could no longer care for him and would not allow his children to come in and help. And you're so right the doctors don't seem to be interested after they get a certain age. Whenever I take my dad to certain doctors I feel so bad for him it's like I've wasted their time. It's like when you get old everyone just put you out to pasture. What To Do?  

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