Wrung out and hung to dry

[DanceinShadow]

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

You actually have an unusual medical insurance. Most forms require referrals. At least that's so in my experience and especially true with Medicaid as the government pays for that. But I can see how that would be a problem if the insurance was like yours and the GP was a poor and unconcerned doctor.

I'm actually not a native English speaker or writer myself so I understand the limitations of language.

I'm not shell-shocked. I was the first time when I had to stay with her overnight and she had an episode where she had no idea who or where she was and kept asking for her own grandmother. I'm actually pretty angry now. So is my mom. She and grandma have a strained in law relationship and she thinks that grandma is and has been taking horrible advantage of grandpa. But she feels like it's not her place to say or do anything cause she's only the daughter in law. My dad is pretty fed up and worried. He's torn cause he sees that this isn't a viable situation but feels like he can't do anything about it because grandpa is as stubborn as squadron of mules. We all want grandma to be put in a home. Dad has flatly told grandpa that if anything happens to him, she's going to a home. Grandpa didn't like that too much and I think he sort of feels like now he solely responsible for her and maybe like my dad betrayed him a little because the only right way is his way.

 

[DanceinShadow]

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!

I don't know much about the width of the field in the US. When I was told about it, my father specifically said it wasn't Alzheimer's and it was simply senile dementia, which is similar in that it's a degenerative disease that can't be treated and only managed. I don't know all the features aside from what I witnessed but it seems that it comes with episodes, some only where she is totally disoriented and has no idea who/where she is and others where she flips out and there's a potential for violence. The problem in my case isn't so much treating the disease but in getting my grandfather to either accept it and manage it properly or... figuring out alternate options.

 

[Grannie G]

Hi DanceinShadow,

Welcome to TP. I have only just caught up with your Thread and am sorry there has been some misunderstanding.

I understand your concern about your grandparents, but even with so much inappropriate behaviour from both of them, your grandmother`s false accusations, and your grandfather`s taking it on himself to change the reccommended dose of your grandmother`s medication, do you think these two people, who have been together for years, are frightened of being seperated?

Would they cope without each other, are they afraid outside intervention will do more harm than good? Would they prefer to stay together in their own home, even with all the ups and downs, rather than end their days in nursing homes, possibly apart.

I realize I`m really not helping to solve your problem or provide any constructive advice. I also understand how concerned you are for them. Would they accept any help in the house? Would they accept any social support, if it helped them stay in their own home togehter.

I`m not sure what is available in the USA, but are there any ways to compromise.

 

[jenniferpa]

Yes, in-laws can be tough. I am fortunate in that I'm more on my MIL's wavelength than my DH is (we did get over the slut comment ) so I have less issues. Also, my MIL is a sweetie.

It's sounds like you've got the situation pegged: probably your grandfather does now feel that he's got to do it on his own, not that it really helps matters much. Apart from getting your GM back to the doctors and seing if there is a different tranquilizer that can be prescribed (and how long ago was she there?: dementia can change, it seems like, daily) or if one of the more targeted anti-psychotics might be appropriate, the only thing I can suggest is what you've already probably tried to do: get your father to keep the lines of communication open, so that possibly your GF can ask for help when he's ready.

Jennifer

 

[DanceinShadow]

Hi DanceinShadow,

Welcome to TP. I have only just caught up with your Thread and am sorry there has been some misunderstanding.

I understand your concern about your grandparents, but even with so much inappropriate behaviour from both of them, your grandmother`s false accusations, and your grandfather`s taking it on himself to change the reccommended dose of your grandmother`s medication, do you think these two people, who have been together for years, are frightened of being seperated?

Would they cope without each other, are they afraid outside intervention will do more harm than good? Would they prefer to stay together in their own home, even with all the ups and downs, rather than end their days in nursing homes, possibly apart.

I realize I`m really not helping to solve your problem or provide any constructive advice. I also understand how concerned you are for them. Would they accept any help in the house? Would they accept any social support, if it helped them stay in their own home togehter.

I`m not sure what is available in the USA, but are there any ways to compromise.

Hi and thank you.

The situation is complicated. My grandparents moved to the US in 94, two years after the rest of my family. They spoke and still speak no English. They made absolutely no effort to learn English. They live in a neighborhood that has a lot of people from the country we are from and there is a local community center that has a lot of senior programs that my other grandparents take every opportunity to join in. They however make no effort to make any friends or do anything and haven't in the past 13 years. They watch a lot of dubbed Spanish soaps and sit at home and that's all they've done in all this time. Their siblings are either in other countries or passed on and their kids are all mostly far away. So there is no support system except our family and my dad is their only child.

There is a city mandated home attendant who I believe is there 8-3 monday-friday. Grandpa however does his best to marginalize her presence and do everything himself. She's actually out on vacation right now and he refused to accept a temporary replacement, which was why I had to be there yesterday.

I've pointed out that even an assisted living facility would be better. They're places where the residents have a good measure of autonomy but the staff makes sure they are fed and there is social activity planned and medical assistance available. But they refuse to move from their apartment. It took ages to get them to switch apartments from the 4th floor to the 2nd. I don't hold out any hope for them to voluntary realize they need help.

Home nurse care might help but I don't know what's available and I don't think Medicaid covers that and my parents can't afford it with their mortgage and dad having recurring problems with vertigo and being in and out of work because of it.

 

[DanceinShadow]

Yes, in-laws can be tough. I am fortunate in that I'm more on my MIL's wavelength than my DH is (we did get over the slut comment ) so I have less issues. Also, my MIL is a sweetie.

It's sounds like you've got the situation pegged: probably your grandfather does now feel that he's got to do it on his own, not that it really helps matters much. Apart from getting your GM back to the doctors and seing if there is a different tranquilizer that can be prescribed (and how long ago was she there?: dementia can change, it seems like, daily) or if one of the more targeted anti-psychotics might be appropriate, the only thing I can suggest is what you've already probably tried to do: get your father to keep the lines of communication open, so that possibly your GF can ask for help when he's ready.

Jennifer

It's nice to see that some in law relationships can result in the DIL calling the MIL a sweetie.

I think she might need an antipsychotic. I don't think she's been into a psych professional since the hospitalization which was some months ago so I think I'm going to take your advice and suggest that to my dad and hope he can convince them into a visit.

 

[Grannie G]

They spoke and still speak no English. .

Well this is definitely one of the reasons they don`t want to risk being seperated, I`m sure.

If they were surrounded by only English speakers, with a different culture too, it would be a nightmare for them.

My husband does speak English, but he was an immigrant. He`s lived in the UK for over 50 years, married here, raised our son and ran his own business. He was naturalised when I was pregnant with our son, so he has had a British passport for 43 years.

But now he has Alzheimers, he is returning to his cultural roots, and only wants to go to the scenes of his childhood. Perhaps your grandparents only feel secure with each other and will put up with anything to stay together.

Maybe they didn`t try hard enough to integrate, but I can`t help feel very sorry for them. Now more than ever, I`m sure they want to be in a familiar environment.

 

[DanceinShadow]

Well this is definitely one of the reasons they don`t want to risk being seperated, I`m sure.

If they were surrounded by only English speakers, with a different culture too, it would be a nightmare for them.

My husband does speak English, but he was an immigrant. He`s lived in the UK for over 50 years, married here, raised our son and ran his own business. He was naturalised when I was pregnant with our son, so he has had a British passport for 43 years.

But now he has Alzheimers, he is returning to his cultural roots, and only wants to go to the scenes of his childhood. Perhaps your grandparents only feel secure with each other and will put up with anything to stay together.

Maybe they didn`t try hard enough to integrate, but I can`t help feel very sorry for them. Now more than ever, I`m sure they want to be in a familiar environment.

They wouldn't be surrounded by only English speakers. There are tons of people that speak our language in this city. It's not like we'd toss them into some nursing home and leave them there. But it doesn't matter because grandpa doesn't trust anyone. I've gone to the emergency room with them before and he doesn't even trust me to translate. I feel sorry for them, I do, but I also feel really fed up with both of them and if only it didn't constantly impact the rest of us, I'd just leave them to wallow in their togetherness and misery. But that's not how it works and I feel more bad for my dad who has no choice and has to go running every time than I do for grandpa who refuses to manage the situation and get the help they both need.

Sometimes I wonder why they ever bothered to come to America. That sounds horrible but maybe they should have stayed in a country where they had a social network and spoke the language. Maybe they moved here for dad and me but I wonder if the trade-off was worth it.

 

[Grannie G]

Sometimes I wonder why they ever bothered to come to America. That sounds horrible but maybe they should have stayed in a country where they had a social network and spoke the language. Maybe they moved here for dad and me but I wonder if the trade-off was worth it.

I think you might be right, but it`s easy to be wise with hindsight. I think there`s a certain age, over which it`s not possible to make a `new life`. Your grandparents were probably too old to turn their life round.

We relocated within the UK 5 years ago, only a distance of 300 miles. My husband was 70. He has never settled, even though he had visited this area for 10 years previously. He tells me every day how much he hates it here.

 

[DanceinShadow]

I think you might be right, but it`s easy to be wise with hindsight. I think there`s a certain age, over which it`s not possible to make a `new life`. Your grandparents were probably too old to turn their life round.

We relocated within the UK 5 years ago, only a distance of 300 miles. My husband was 70. He has never settled, even though he had visited this area for 10 years previously. He tells me every day how much he hates it here.

It just gets me. My other grandparents moved too and they're about the same age, maybe a few years difference. And they learned some basic English, made friends, got involved at the community center and continued to live their lives. Why couldn't they make the effort too? And it's selfish but I'm only one person and there's no other grandkids so whatever happens, I have four grandparents and two parents to take care of. Not to mention that my fiance's sister is a flake so their parents will be our responsibility too. It is a burden. It's awful but it is. My dad keeps saying over and over that if he ever gets like grandma, he wants to be put in a nursing home. no ifs ands or buts.

 

[Grannie G]

Dear DanceinShadow,

By the sound of your posts, it seems you are taking on far too much responsibility on your own shoulders.

You are one member of a family and no-one is saying the full burden of care should be yours.

If you continue to allow it to stress you out so much, you will become bitter.

Your father has already absolved you from eventual responsibility for him. Try not to anticipate what may happen in years to come.

Old age with illness and disease is very frightening, but it is the natural course of life. It will happen to each and everyone of us, bar accidents or premature death.

Birth, decay, death, that`s how it goes. It depends on the individual, what we make of the bits in-between.

You are entitled to make your choices. You can take over the caring or not, as you wish.

Take care or yourself for a while, it sounds to me as if you need to.

Love xx

 

[Margarita]

My mother is 76 , immigrant to UK in 1959 in to a place called Fulham in London .

where also a lot of people from they country of birth immigrated .
My parents did not like me mixing with the English speaking Children nor them with the english speaking people , so all of my friends back then where from our country of birth , and we also had a local community center that we would all have social evening .

My mother never learn the english , now 50 years on & she still has an accent , as my parents got older they seem to stop mixing with anyone they keep themselves to themselves to the point of Isolating themselves in they home .


Just like you say my parents also did that in they 65

. They watch a lot of dubbed Spanish soaps and sit at home and that's all they've done in all this time.

It I think about it they did not want to let go of they roots , even thought they lived in another country , it was like steeping into my roots of the country I was born in when I visited they home.

My father had a heart attack when he was 65 years old and things got worse he would not take his medication never go out , mum never new what the long team affect it would have on my father in not taking the medication for blood purser , he would take them but only when he felt like taking them.

I use to tell mum , but she would say , oh leave him alone his OK

Hardest part as they daughter is standing back & just letting them get one with it, even thought doctor even come around asking why my father had not pick up medication for his heart .

Till it all came to a head in 2002 when my father was in his 70s he had a heart attract that killed him. I can so understand how frustrating it is for your father to seeing this happening , because he looking at it from outside the box , where your grandparents are not they living in they own world of the past that they feel safe in.

 

[Nebiroth]

As far as I know "senile dementia" means, literally, "old age dementia" - that is, it means someone is elderly and has dementia. It has (at least, in the UK) fallen into disuse because it is a generalised term. Once diagnosis has taken place, it is more accurate to describe the type of dementia specifically: Alzheimer's Disease, Vascular Dementia, Lewy Bodies, Picks Disease etc. Not least because each type has it's own typical symptoms, progressions and treatments. For example, the cholinesterase type drugs are only licensed in the UK for people with Alzheimer's. It is possible to have "mixed" dementia - ie more than one form of it. Also, the term is avoided because it tended to imply that dementia was exclusively a disease of the elderly, and it is not (although it is much more common in those of advanced years).

This is opposed to the term senility, which literally means the normal loss of faculties due to old age. That is quite different to dementia although the two can be easily confused in the very early stage which is why an early diagnosis is difficult, and why families assume "it's just old age"

Again, in the UK, "senility" and "senile" tend to be derogatory terms, and hence, the medical profession avoid using them.

 

[DanceinShadow]

Dear DanceinShadow,

By the sound of your posts, it seems you are taking on far too much responsibility on your own shoulders.

You are one member of a family and no-one is saying the full burden of care should be yours.

If you continue to allow it to stress you out so much, you will become bitter.

Your father has already absolved you from eventual responsibility for him. Try not to anticipate what may happen in years to come.

Old age with illness and disease is very frightening, but it is the natural course of life. It will happen to each and everyone of us, bar accidents or premature death.

Birth, decay, death, that`s how it goes. It depends on the individual, what we make of the bits in-between.

You are entitled to make your choices. You can take over the caring or not, as you wish.

Take care or yourself for a while, it sounds to me as if you need to.

Love xx

I'm not taking anything onto my shoulders that isn't being thrust there. I do not feel competent to take care of my grandmother at all and I felt very uncomfortable having to use even gentle physical force to maneuver her around. I know what choices I would be making if it were up to me but it is not and it is not up to my parents. Unfortunately meanwhile we have to pick up the slack because my grandfather is also not competent to take care of her properly and I do resent that. I am not bitter though I am angry, which I think is a reasonable response to frustration. I appreciate your concern though very much.

 

[DanceinShadow]

My mother is 76 , immigrant to UK in 1959 in to a place called Fulham in London .

where also a lot of people from they country of birth immigrated .
My parents did not like me mixing with the English speaking Children nor them with the english speaking people , so all of my friends back then where from our country of birth , and we also had a local community center that we would all have social evening .

My mother never learn the english , now 50 years on & she still has an accent , as my parents got older they seem to stop mixing with anyone they keep themselves to themselves to the point of Isolating themselves in they home .


Just like you say my parents also did that in they 65


It I think about it they did not want to let go of they roots , even thought they lived in another country , it was like steeping into my roots of the country I was born in when I visited they home.

My father had a heart attack when he was 65 years old and things got worse he would not take his medication never go out , mum never new what the long team affect it would have on my father in not taking the medication for blood purser , he would take them but only when he felt like taking them.

I use to tell mum , but she would say , oh leave him alone his OK

Hardest part as they daughter is standing back & just letting them get one with it, even thought doctor even come around asking why my father had not pick up medication for his heart .

Till it all came to a head in 2002 when my father was in his 70s he had a heart attract that killed him. I can so understand how frustrating it is for your father to seeing this happening , because he looking at it from outside the box , where your grandparents are not they living in they own world of the past that they feel safe in.

Thank you for sharing your story. Yes both my parents and I feel that same frustration with the situation. The worst part definitely is being powerless in the face of their stubbornness.

 

[DanceinShadow]

As far as I know "senile dementia" means, literally, "old age dementia" - that is, it means someone is elderly and has dementia. It has (at least, in the UK) fallen into disuse because it is a generalised term. Once diagnosis has taken place, it is more accurate to describe the type of dementia specifically: Alzheimer's Disease, Vascular Dementia, Lewy Bodies, Picks Disease etc. Not least because each type has it's own typical symptoms, progressions and treatments. For example, the cholinesterase type drugs are only licensed in the UK for people with Alzheimer's. It is possible to have "mixed" dementia - ie more than one form of it. Also, the term is avoided because it tended to imply that dementia was exclusively a disease of the elderly, and it is not (although it is much more common in those of advanced years).

This is opposed to the term senility, which literally means the normal loss of faculties due to old age. That is quite different to dementia although the two can be easily confused in the very early stage which is why an early diagnosis is difficult, and why families assume "it's just old age"

Again, in the UK, "senility" and "senile" tend to be derogatory terms, and hence, the medical profession avoid using them.

Thank you for the information. However like I've said before this is the exact term of the diagnosis we have and there is no derogatory stigma attached to it in the US. I can refer to it as dementia from here on in but that won't change that reality. In any case, it's really rather irrelevant because as I've also mentioned before my grandfather minimizes any impact of medical intervention by refusing to properly medicate her and does not bother to have her regularly check in with a doctor to make sure the medications are still appropriate.

 

[Kathleen]

I'm not taking anything onto my shoulders that isn't being thrust there. I do not feel competent to take care of my grandmother at all and I felt very uncomfortable having to use even gentle physical force to maneuver her around. I know what choices I would be making if it were up to me but it is not and it is not up to my parents. Unfortunately meanwhile we have to pick up the slack because my grandfather is also not competent to take care of her properly and I do resent that. I am not bitter though I am angry, which I think is a reasonable response to frustration

You might not like me saying this, so please don't take it the wrong way but, in my opinion, stepping in and helping your grandfather is not helping him to change the way they live.

Your grandmother can't help her behaviour, your grandfather is coping as best he can and your parents and you are trying to put things right.............sounds a nightmare situation for you all.

Maybe you could keep away for a short time and see if your grandfather decides he does need to have the medication altered and some help his wife.

It sounds as though you are all getting more and more angry with each other nothing is getting any better, that can't be good for any of you.


Kathleen

 

[DanceinShadow]

You might not like me saying this, so please don't take it the wrong way but, in my opinion, stepping in and helping your grandfather is not helping him to change the way they live.

Your grandmother can't help her behaviour, your grandfather is coping as best he can and your parents and you are trying to put things right.............sounds a nightmare situation for you all.

Maybe you could keep away for a short time and see if your grandfather decides he does need to have the medication altered and some help his wife.

It sounds as though you are all getting more and more angry with each other nothing is getting any better, that can't be good for any of you.


Kathleen

Actually you're only echoing what I've been thinking. The problem is that I strongly suspect that he's past changing. If we don't help, he'll just muddle along and still not do the right thing. Like, if we don't come watch her, he just won't leave the house for anything and thus allow his own illnesses to progress unchecked. I don't know what to do with that.

 

[Margaret W]

Problem

I must ask the question, but have you got Social Services involved? If you do, they can go in to the home and make sure your grandmother has the right medication, despite what your grandfather says. And can also observe him and his behaviour and make a recommedation for treatment for himself.

It sound a horrible situation that you are in and sometimes, at the end of the day, you just have to leave the folks to it and accept that it is their choice to do it wrong.

Much love

Margaret

 

[sandrajean]

Hi Danceinshadow,
I have lived through the nightmare of not having control.
My mum was diagnosed several years ago but only after she got lost for four hours whilst driving from her house to mine a journey that would normally take 25 mins. It was only then that my Dad would admit openly that something was wrong. By the time she was diagnosed she was quite bad. She obviously had to stop driving which caused lots of arguments as you cant reason with someone who doesn't know they are ill.
We had all the same problems because Dad was in control and we could not take over he would not let us help you have to sit back and wait to pick up the pieces.
My Mum's behaviour is not as aggressive as your Grandmothers and it was only when my Dad became ill with Lung cancer and could not cope that I could take over, he died within 11 days of his diagnosis. I do not know how he coped and did not realize how much he covered up but in the end you have to respect his wishes and although I do feel guilty that I did not do more there is not anything you can do if they will not let you help because the relationship between a husband and wife is different to that of children and parents.
My Mum now lives with me but without the help of my husband and daughters I do not know how I would cope.
I hope this helps as you are not alone in what you are going through.
Love Sandrajean