Wrung out and hung to dry

[DanceinShadow]

Forgive me if this ends up very long but there is so much and I have to start at the beginning.

My paternal grandmother has never been the easiest person to get along with. She's stubborn, demanding, rude and often unpleasant. She has always been a fan of crying wolf to get her own way.

The senile dementia has not made her into a different person. It has mostly increased these less than palatable qualities. She has episodes where she cries, accuses everyone of not loving her and saying we'll all be sorry when she's dead. These aren't new. She just takes them farther.

The new things are even less manageable. The diagnosis was prompted by an episode where she accused my eighty-four year old grandfather of cheating on her with their home attendant and tried to strangle him. She now believes he is/was having an affair with a forty year old doctor and has a two year old with her. She will not let him out of the house. He has some currently benign tumors and needed to get more testing done. He has had to reschedule the appointment four times.

Yesterday I went to their apartment so I could watch her while he went to get the tests done. She had an episode, cried and begged him not to leave, told him her insides were on fire and she was going to die, accused him of being a horrible husband and so on and so forth. She pulled on a winter jacket over her housecoat and tried to run outside in that and slippers. I had to bodily maneuver her away from the door and into a chair four or five times. She tried to collapse onto the floor several times and the last one all I could do was manage her fall so she only slid down and didn't hurt herself at all. She demanded we call an ambulance and when we did, she continued to scream, saying we were having her committed and finally grandfather had to cancel the ambulance. Which was for the best because through the day it became obvious she was not in need of emergency care. When she eventually decided he should be allowed to go get the tests, he hid all the knives and forks.

Unfortunately my grandfather makes the bad situation worse. He only gives her half her medication dose per day because he thinks it's bad for her. He tries to reason with her when it's obvious she's having an episode and isn't responsive to outside stimuli at all. He isn't physically capable of lifting her if she falls or managing her while she's raging around the house. He tries to take care of her all by himself when he's not all that healthy himself and won't let the home attendant help as much as she could.

My father wants my grandfather to put her in a home where medically trained staff could provide proper care but he refuses. If anything happened to him though, that's where she'd be because my parents realize they can't quit their jobs, sell their house (it's a split level so she'd probably fall down the stairs) and take care of her 24/7. And I'm afraid something will happen to him because he doesn't take care of himself at all. In fact, taking aside the dementia, I think she's healthier than he is.

I'm considering convincing my parents to get power of attorney over her so they could have her in a home without my grandfather's agreement as I don't really think he's capable of making the best decision for her or himself. Except it'd probably shatter him.

It's a mess.

 

[Skye]

Hi DancinShadow

First of all let me welcome you to TP. I hope you'll find lots of support here.

It does sound as if you have problems with your grandparents. Has your grandmother been diagnosed? The reason I ask is that the term senile dementia is not normally used these days. If there has been a diagnosis, has any help been offered? Does your grandmother see a consultant, and is she on any medication?

Your first line of attack is for your parents to see your grandparents' GP or consultant and explain the situation. It sounds as if your grandfather is in a vulnerable situation, and he should certainly be keeping appointments.

However, it is your grandfather's decision whether to have her admitted to a care home. There is nothing you can do about that, and power of attorney wouldn't help. For one thing, your grandmother would have to agree to give it your father rather than her husband, and that would be doubtful. And if he did get it, it still wouldn't allow him to have her admitted. PoA only gives control over financial affairs, not welfare, assuming you are in England. That will change in September, but your grandmother will still have to show that she understands what she is signing and agrees to it.

All you can do at the moment is try the medics amd see what help they suggest.

Best wishes,

 

[DanceinShadow]

Hi Skye. Thank you for responding.

My grandmother has been diagnosed with senile dementia. She was hospitalized after she tried to strangle my grandfather and was in the psych ward for about 8 days. I think they wanted to keep her but grandpa had her released. The doctors prescribed medication - tranquilizers - because there is nothing that can mitigate this form and all we can do is keep her calm. Like I said, grandpa only gives her half the dose for some stupid reason.

The GP knows about the situation but we can't bodily drag grandpa to appointments and he refuses to leave her alone, especially if she's having an episode.

I'm in the US. We can have grandma declared legally incompetent. The problem is that then we'd have to prove that grandpa isn't capable of handling POA because it will be the court's first impulse to give it to him.

The medics can't really suggest anything. Grandpa only takes medical advice for himself and for her as long as he agrees with it. He thinks that reading medical encyclopedias makes him more competent than the doctors and obviously that's not true as grandma's half dose isn't sufficient to keep her calm.

 

[jenniferpa]

Hi there.

I suspect that you are not in the UK? Is that right? It does sound a mess for all concerned, wherever you are. When the person with dementia gets paranoid and the person caring for them is both in ill-health AND inclined to give way to them it's difficult to imagine a happy outcome.

I very much doubt there is anywhere (UK or elsewhere) where any power of attoney could be drawn up for someone with a living spouse which would override that spouse's wishes. Even if it could be done, the ramifications would be immense: if I were put in that position by one of my children I think I'd find it very hard to forgive them.

Best wishes

Jennifer

 

[Skye]

I'm in the US. We can have grandma declared legally incompetent. The problem is that then we'd have to prove that grandpa isn't capable of handling POA because it will be the court's first impulse to give it to him.

Sorry, that does make a difference, both with the diagnosis and the POA!

It does sound as if the medics have done their best, and I agree that it makes no sense for your grandfather to only give her half the dose. It sounds as if she really does need the tranquilisers.

Do you think there's any prospect of the courts granting the POA to your father? It does sound as if they both need help.

 

[DanceinShadow]

Hi Jennifer. Thanks for replying.

You're right, I'm not in the UK.

I don't know what the legal options are - we may have to declare them both incompetent and you're right grandpa would never forgive us. I just don't know that I'd rather have him dead than angry at me. He just refuses to see the reality of the situation and I don't know what to do. I don't want to watch him waste away. And handling her episodes for a single day wrung me out so badly that I'm still tired today.

I guess maybe if we could have a nurse there but she'd have to be there basically 24/7 and be able to subdue and tranquilize my grandmother when the episodes got bad enough. I don't think we can afford that...

 

[DanceinShadow]

Sorry, that does make a difference, both with the diagnosis and the POA!

It does sound as if the medics have done their best, and I agree that it makes no sense for your grandfather to only give her half the dose. It sounds as if she really does need the tranquilisers.

Do you think there's any prospect of the courts granting the POA to your father? It does sound as if they both need help.

I'm going to try emailing some of the professors at my law school. I'm afraid that the odds are we'd have to show grandpa incompetent too and I don't know how easy that would be...

 

[Margarita]

My grandmother has been diagnosed with senile dementia.

Was a brain scan done ? Or Just some ignorant doctor or consultant that told your family that in USA , I say ignorant as I thought USA was more advance in understanding dementia then UK , So it must be Just more advance in Just medication . if a doctor or consultant is still using that word senile

 

[DanceinShadow]

Was a brain scan done ? Or Just some ignorant doctor or consultant that told your family that in USA , I say ignorant as I thought USA was more advance in understanding dementia then UK , So it must be Just more advance in Just medication . if a doctor or consultant is still using that word senile

I'm not sure why you're being negative towards American medicine and for the record we do not have consultants in medicine, only doctors, nurses and other medical professionals. My grandmother was brought into a very reputable hospital and I am sure all the proper tests were undertaken. My father was involved with the whole process and spoke to the doctors himself. My family has always been very watchful of having a good doctor and a second opinion in any medical situation and I know my father wouldn't have let this go if he wasn't satisfied with everything that was done.

I don't see what using the term 'senile' has to do with anything. Senile dementia is a name of a degenerative neurological disease and using it doesn't make the diagnosis somehow invalid.

 

[jenniferpa]

Thought so: I'm in the US as well, although my mother is in the UK.

Look your grandfather may be being unreasonably stubborn about this (well probably no "may" about it) but having them both declared incompetant is, I feel, using the sledgehammer approach. You say you'd rather have your grandfather alive and mad with you all rather than dead, but have you really though this through? I have to say, I personally would rather BE dead than declared incompetant by my family after 80 odd years of living, particularly if my primary "problem" was an unwillingness to place my spouse of many years in a nursing home, and a refusal to provide medication as prescribed. This probably sounds harsh, and I have every sympathy for you and your parents, but I must say there are worse things than death, and the scenario you suggest sounds like one of them. Let's face it, he may be correct about the tranquilizers depneding on what they are: if they "zonk" her out it may be much more difficult for him to manage her. Perhaps a better approach might be to try and get her doctor to prescribe something else: there are a variety of meds than can help with the psychotic aspects of this condition without necessarily drugging her into unconciousness.

Jennifer

 

[DanceinShadow]

I totally see where you're coming from Jennifer. And maybe you're right. I don't know. I do know he is wrong about her medication because I can't imagine that letting her have two pills a day would make her zonked if one doesn't keep her at all calm. Maybe there could be better medication but that requires forcing grandpa to take grandma to the doctor which he doesn't like doing. He isn't managing her illness. I guess maybe we could tranquilize him and then take her to the doctor ourselves and then try to keep on her to use the correct medication but... we can't be there 24/7. If you have any better ideas, I'm open.

 

[Margarita]

I'm not sure why you're being negative towards American medicine and for the record we do not have consultants in medicine,

No am not being negative forwards the medication that the USA bring about for people with AZ ,

I just feel its very very negative of then still using a negative word like senile , as dementia is just dementia at what ever age it happen to a person . as a person who is in they 40s can get dementia and they still young , so why use the word senile ?

If you get my point .

 

[DanceinShadow]

No am not being negative forwards the medication that the USA bring about for people with AZ ,

I just feel its very very negative of then still using a negative word like senile , as dementia is just dementia at what ever age it happen to a person . as a person who is in they 40s can get dementia and they still young , so why use the word senile ?

If you get my point .

My grandmother doesn't have AZ. I'm sorry that you think senile is a negative term. All it means is "of, relating to, exhibiting, or characteristic of old age <senile weakness>; especially : exhibiting a loss of cognitive abilities (as memory) associated with old age." I don't see how the age of the patient is relevant. The state created by the illness is that associated with old age as the advent of years leads to biological deterioration. That's fact. It's sad that our bodies get less efficient as we get older but it's true.

In any case, I'm not here to debate semantics. My family has a problem and I'm trying to cope.

 

[Margarita]

I may disagree but like you say

In any case, I'm not here to debate semantics.My family has a problem and I'm trying to cope

yes and your find great support on TP xx

 

[jenniferpa]

I'm afraid we're all getting a bit hot under the collar here. It's just that in the UK Senile is now a perjorative term, and as this is a UK site, you have to let us have our little foibles. As an Englishwoman living in the US there have been times when I have put my foot very firmly in my mouth - two nations divided by a common language just about sums it up.

Sadly, though, the reality is that wherever you are, unless the diagnosis is Alzheimer's there's not much medication out there to help. It's true that in the US you may get the meds that in the UK are designated as being ONLY for AD, but they may or may not help.

Jennifer
P.S. When I first moved to the states I shocked my new MIL to the core when I referred to myself as a "slut" when it came to housework: slut in the UK doesn't have the sexual connotations that it does in the US

 

[DanceinShadow]

I'm afraid we're all getting a bit hot under the collar here. It's just that in the UK Senile is now a perjorative term, and as this is a UK site, you have to let us have our little foibles. As an Englishwoman living in the US there have been times when I have put my foot very firmly in my mouth - two nations divided by a common language just about sums it up.

Sadly, though, the reality is that wherever you are, unless the diagnosis is Alzheimer's there's not much medication out there to help. It's true that in the US you may get the meds that in the UK are designated as being ONLY for AD, but they may or may not help.

Jennifer
P.S. When I first moved to the states I shocked my new MIL to the core when I referred to myself as a "slut" when it came to housework: slut in the UK doesn't have the sexual connotations that it does in the US

I understand that there are differences. I'm originally from a completely different country myself. But frankly I was startled that when I posted expecting support I would find myself in a debate about the terminology I used. I stated a specific diagnosis, it was mentioned in the thread I wasn't from the UK. Simply telling me that the word senile is considered negative in the UK would have been preferable in my opinion, though I can't see what I could do about the fact that this was the official term of the diagnosis. I don't mean to get hot under the collar but I couldn't help but feel a bit attacked.

Anyway, from what I understand there is no medication for grandma's condition, just tranquilizers to keep her calm. Maybe we just need different tranquilizers that would stave off the episodes.

 

[Margarita]

Simply telling me that the word senile is considered negative in the UK would have been preferable in my opinion,

Yes jennifer did express it better then I did , so I do apologies to you for expressing it in a way that your perceived I was attacking you , sorry about that as it was not my intention as a personnel attach at you .

Anyway I better shut up before I put my foot in it again.

 

[jenniferpa]

The other thing you have to understand is the differences in the two medical systems: in the UK the GP acts as a gate-keeper: you don't get to see specialists unless you're referred while in the US (well with my medical insurance anyway) I can see anyone I want without getting a referral. Sometimes we have people posting who have essentially been told by a GP: your loved one has dementia with absolutely NO follow up (it's not supposed to work that way but...) or in fact any indication of why that is. So that's why we sometimes focus on diagnosis: there are things that might be done, and tests that might be run, but we can't assume anything because they don't always GET done.

Also, just to add to the confusion, some of the posters on the board are not native english speakers (or rather, I should say, native english writers).

However, we're getting away from the main issue: your concern for your grandparents and parents. Having spent some one-on-one time with your grandmother you're probably pretty shell-shocked: there is no gentle introduction to the hell of dementia. What do your parents, particularly your father, feel about the whole thing?

Jennifer

 

[DanceinShadow]

Yes jennifer did express it better then I did , so I do apologies to you for expressing it in a way that your perceived I was attacking you , sorry about that as it was not my intention as a personnel attach at you .

Anyway I better shut up before I put my foot in it again.

Thank you. I appreciate that we got this cleared up.

 

[Brucie]

But frankly I was startled that when I posted expecting support I would find myself in a debate about the terminology I used.

just a few words, from my viewpoint [carer, not a medic].

In the UK dementia has a range of names, according to the type. For someone in the UK, senile dementia has no specific meaning unless further qualified. To understand what someone else is describing, some form of translation mechanism is needed, otherwise things can become very confused.

Alzheimer's is the most widely used name for dementia in the UK, though originally it defined only young onset dementia - now it is generally thought to be an old person thing. The fact is that it affects all ages. So 'senile dementia' can't be equated to Alzheimer's over here. Same goes for vascular dementia, etc. Each form of dementia has its own presentation, and treatments.

To try and understand another person's position, terminology must be defined, so to an extent, there will always be a discussion of terminology when things are discussed internationally.

My experience is with my wife's young onset mixed dementia and, as such, I can't really suggest anything helpful.

I hope the replies you have already received may have been better in that respect!