I apologize in advance if this topic has been previously covered. I find similar questions, but not quite the same scenario or corresponding answers.
My mom will be 80 this year and about 6 years ago started displaying signs of dementia. MRI follow-up with doctor showed "white matter disease" and the neuro said she had vascular dementia.
The major obstacle here is she flat-out refuses to be seen by a physician. Apart from the dementia she also has severe osteoarthritis, has been diagnosed Type II diabetic, and has heart disease. She saw a doctor last 4 years ago! No amount of pleading changes her mind. She has a lot of pain, but still refuses. Prior to the dementia, she would on occasion see a doctor, but frankly, hates them. I don't know if there is anything that can be done for the dementia - I would say it is moderate heading toward severe - but I would love to have her seen by a professional. She is currently not on any meds.
We live together and I am the only caregiver and am disabled from several autoimmune diseases. I have one sibling who has no contact with us and no other family. I am unable to leave her for any period of time and have no type of support. That's another thing - she will not have anyone in her home. I offered to have a doctor come to the house well, her response was too colorful for this forum. I cannot leave to attend caregiver support meetings. At the risk of sounding whiney, I am having increased trouble with my health now due to the stress of dealing with the ins and outs of Mom's dementia.
I should add that I do not have POV, nor does she have ANY legal forms in place. I think she thought she "had time", but now, time is running out. I have to admit, this scares me - I love my mother and want to do the best I can for her and not leave decisions up to someone else who doesn't care.
I am thankful for the info I have gleaned from this site. Prior to this evening, I have felt very depressed, but reading many of the articles has shown me I am not alone.
Thank you for your suggestions and answers.
As for the will, if she cant realise how important it is to have one, you might have to appoint some type of guardian to assist with end of life plans. Im not sure about that though, so you might need tp hire lawyer.
My husband and I are currently dealing with his parents (94 & 92) who both have stubbornness about going to the doctor. Not sure about your state laws but in OH the elderly have their rights. If they don't want to go to hospital or stay in hospital, NH or Rehab, no one can make them. Including the medical profession. (More on that for those with questions.)
If your mom refuses anything a doctor wants to do, he cannot do it. Father in law (FIL) who has Rheumatoid Arthritis took a terrible fall, had a couple of cuts and fractured his hip and tibula. The squad came (who will only allow 3 refusals to transports before charging) to get him up. He, for his third time refused (MIL with dementia signed a paper for this) and it took until the 4th day before a healthcare agency could persuade him to go to the hospital with him transporting. Even then FIL felt that his son put them up to it. So mad and uncooperative. The hospital had to investigate domestic abuse due to the bruising and fall. So don't let that surprise you should she have a serious fall due to both dementia and osteoarthritis.
FIL's hip by the Trauma Unit was described as "IMPRESSIVE" which means they have never seen a hip so far gone without the patient being on some kind of pain med. Surgery is out of the question. Your mother sounds to be this stubborn, too.
Before this, FIL was falling regularly and if he remained on the floor he battled edema. One of his experiences due to his not seeking medical assistance was that when hubby finally got him to hospital, they eventually had to withdraw the fluid from his lungs via a needle in his chest.
My husband had to have a heart valve transplant and his brother came up, got a lawyer to come to the house, get the paperwork filled out for POA. THEY HAD NOTHING BUT A HAND WRITTEN WILL WRITTEN 25 YRS AGO. FIL tried to revoke them a month later once his meds improved his condition but never followed up on paperwork. Did you catch the "meds improved his condition" His dementia is one that he can handle simple things but not complexed issues -- he talks in circles, combative.
Use this example as a motivator. Guardianship takes money for lawyers and time. Then the battles could be horrific. No doubt you will need your money for your own health. I cannot imagine from your messages, that guardianship is something you want for your own state of mind. I respect that. For yourself, do try Sue Maxwell's approach. BUT read on.....
I failed to mention that my MIL enabled FIL's behaviour by being subservient. It resulted in horrible arguments, because MIL just was not able to help. He would say "She wasn't good enough, she didn't know what she was talking about, she says horrible things about him" --- don't let it come to this for you. Tough love works well. She is becoming the child and you the mom. With love, draw the behavior line. Does that make sense?
And if you have a second floor, keep her on the first and escape to the 2nd for your sanity. Having your own space helps.
Keep us informed. I will be reporting back to pstegman once FIL is home longer. He is currently receiving in-home PT and OT. We find out next week. The concern is if Medicare will cover his expenses if he doesn't keep trying.
Please understand that your situation will get much worse. Action now for yourself. And for yourself, don't turn away from natural products. Hugs!
All I can advise you to do in the meantime is just keep an eye on her bloods and bloodpressure and of course her diet?? I know its hard and how unbelievably stubborn they are. I would also try and see a geriatrician they are better at understanding "dementia" than a GP and are VERY supportive of carers. The advice post was good I never thought of that to explain to her that if something happened to you what would happen to her? I will try this and see what happens. Like you my mum cannot understand that ive had a stroke and how tired I am she NEVER WILL this is going to get worse and I know that now is the time for me to leave before I have another stroke its so hard when you've no money and nowhere to go to think about looking for another job etc.....but our health is important too ive learnt to force myself to become less stressed as ive had to or risk another stroke. please don't wait like me until something happens to you before you get help as another post says she could even with all her health issues "outlive you".
Big hugs as I am walking in your shoes I even have digestive problems and immune issues its ALL stress the less stressed I am the better my stomach feels. Try and switch off from mum and think of you go for a walk,stay with a friend have nights out if you make her your whole life you will get very ill. As ive said before the more you back away from mum the MORE she appreciates me!!
JessieBelle, I am sorry that those doctor visits were so awful for you! I have wondered about just driving Mom to the doctor's office - I can only IMAGINE her outburst! But, then, that might be a good thing for the doctor to see! She has always had good health, but her un-acceptance of doctors comes from a childhood trauma. She has never been a doctor-going person and frankly, never needed to go. And I KNOW she knows she has problems that need to be addressed - her knee pain alone is excruciating, but she is convinced there is no help for her. Much of this is thanks to her last physician - he was useless. And I let him know it! Funny I don't have a problem telling off a doctor, but can't boss Mom! Now, she has the best doctor in the town we live in - and he's great - but if I can't get here there, he's not much good either.
OliviaC, I feel for all you have been through. Your discussion about the EMTs and your Father-In-Law reminded me of a situation about a month ago. When Mom had an episode where she didn't recognize me, she got incredibly agitated, screaming "Get out of my house or I'll call the police!" I said, "Let me call for you." And I did. They sent the squad out, placed her on a stretcher as she screamed about me. They removed me from her sight. Her blood pressure was sky high and they called for a police officer to come - apparently the PD has to dictate whether she can be taken in for this type of situation - I don't quite understand it. Anyway, after a while she started talking about her daughter and they brought me back to her. She was SO happy to see me, telling me how she was so scared of this woman she didn't know who had been in the house (me!). Anyway, the police officer never showed - shorthanded, busy, etc. - and she settled down, so they didn't take her to the ER. They asked me if I wanted her taken and I said YES, but then once she calmed down and was more sensible, they didn't feel the need to and she refused - of course. They tried the angle of her blood pressure being so high, but she wouldn't go. I imagine this situation will present itself again at some point.
I don't mean to go on and on, but I so appreciate having a place where others know what I'm talking about and understand what I am feeling. We moved to a different town about 10 years ago, after 40 years in the same town. Geez, had I known it would be like this I would have NEVER let her sell the house. :(
You will find it ironic that just a few short years ago she was MY caregiver. I have Systemic Lupus among other illnesses and the lupus had attacked my brain. Mom did EVERYTHING for me. I couldn't read, count and barely walk. Thankfully, after two years of chemotherapy the lupus backed off and I am certainly better. But, you can imagine the number stress plays on this disease. This past August, after 12 years in remission, I found myself in a terrible ulcerative colitis flare. I am better, on major meds, and coping. :) Probably TMI, but again, it's so nice to know others "get it."
Thank you, thank you, thank you for your caring comments and straight talk. I will let you know what I glean from the gentleman at the Area on Agency.
I hope you all have a great weekend. :)
Ferris1, I have lately found myself just letting Mom "be". I do believe it will take an injury/accident before she receives help. She has had a few falls - one pretty bad - and refused help. I dread the thought. Again, a situation like the one that led to the paramedics being here might be the thing that changes it all.
Kazzaa, we sound much alike. Being chronically ill was hard before, but now, well, it feels like I have fallen in a pit and cannot climb out. I have been on SSD since 1998. Limited funds and no home other than here, which makes it very hard to go. Where? My brother has nothing to do with us. Frankly, I think he recognized the dementia long before I did - he's a police officer (well, now retired), and has seen plenty of this. I think if I wasn't so angry, I might be able to deal better. I'm working on it, but am not very good at letting do. :) I do have a very caring half-brother and his wife, but they live in Northern California - about 8 hours away. Too far away to get a night away, but ultimately the place I will land one day.
Thank you all! Your comments are invaluable!!
Unless you force her into a nursing home, what else can you do.Good luck!
Stick like glue to your own health guidelines, and I hope the various agencies will be round to give you practical help very fast. Stay well x
I am sorry your Mother won't co-operate. Mine doesn't like to go to the doctor either, but it is basically because it is hard for her to travel.
Elders avoid Docs for many reasons--here are a few:
===Avoided Docs for most of life--could've been mentally ill, feared being diagnosed with mental problems, due to what happened to someone else...fear both the diagnosis and treatments over time.
===Avoid trigger-destinations--those they fear might compromise their remaining freedom even more.
===Hurt by Docs in past, fear more.
===Religious belief.
===Don't want to prolong a compromised life.
===Scrambled thoughts can't make sense of it, which becomes scary.
Plenty more!
If you have some clues WHY they dig in their heals, it's often easier to re-route their attention or something, to get them do comply with what's needed.
Dementia'd person has decreasing ability to making sense for more than a few minutes, if that, depending on progress of this ill.. Trying to explain anything logical to them, is not likely. How much real communication can happen, is very individual.
Could started by calling the local Area Agency on Aging:
---Request Social Workers do an in-home evaluation of the Elder.
-----Tell them your concerns for both Elder and your own health,
------that Mom has not seen a Doc for years, you worry there might be need, and nothing established
------need help getting her to Doc for a Checkup at least
===and you can't do it===.
------Let them know Mom may not be safe in your home, due to your own ills, if necessary!
------Describe the help you need for Mom.
Bottom line?
Even demented persons have some ability to choose---some by not going anywhere that might result in prolonging their miseries. Others by refusing to eat, etc.
If Mom is basically comfortable, and clean and safe, even without a Doc, that is a choice--and it might be OK, depending on your feelings..
If she has ills needing treated, you might need Social Workers to help get her that treatment, OR, it's also some's choice to just let that go, to let the person avoid what they want to avoid.
Worst thing?
IF Mom dies without seeing a Doc for a long time, you might be required to have an autopsy done, to reveal cause of death,~ unless there is some nice Doc who will just write on the certificate "old age dementia and sequelae".
Finally I told her that she was going or she was going to wind up in the hospital. She kept arguing, I finally told her that if I had to call both of my sisters, we were going to drag her butt to the doctor, no ifs ands or buts! Now I admit that my vocabulary could probably have been nicer, but after hours of her yelling at me, I had, had it!!!
She has dementia and cannot make the best choices for herself, that is why I am her POA. You listen and deal with the crap as long as you can and then you have to make a stand and say "no more bull----!" In your instance if you are quite ill then it sounds like you both need help and your mother needs medication to quiet her down and quell the tantrums. It is time for it. We just began my mother a few months ago and it was working great but she began getting headaches and so we had to stop one of the meds. I have to get them to institute another one as I cannot live through the hell she has put me through. The tantrums and argumentative behavior is just too overwhelming. I too am on disability and have medical problems of my own.
Is there any family member who can assist you? If not call a social worker perhaps they could help you.
My thoughts and prayers are with you.
Once again, a broken record, but thank you all for your comments! They are so valuable to me!!