I'm struggling to remain strong

[AussieLady]

I've been a member of this forum for almost a year now. I come here and read your accounts of life with someone you love who has dementia and it comforts me that I'm not the only one caring for a husband whom I love deeply, but who is not the man he was five years ago, and will never be again. He's a diabetic so I also have to try and manage his blood sugar because he isn't able to any more. As well, while he was always something of a "hard a$$" in years gone by, somehow the dementia has changde him into someone who cries easily, can no longer make a decision as simple as ordering from a menu, talks to himself or mumbles constantly, and throws tantrums and screams when something minor doesn't go the way it should . And all of that's the part that I have been struggling with silently. I'm finally posting here because tonight I'm struggling to accept his mental deterioration, and while I have close and enormously supportive friends, they aren't living it. But I know you are. So here I am. I live in Dallas, Texas. I'm a young 70, and my husband is an "old" 83. He was diagnosed by our neurologist with dementia about 3 years ago. Unlike many of you - and this is where I feel like I have no legitimate reason to complain (sigh) - he's still able to shower, dress, and socialize. We still travel to my homeland of Australia, and on wonderful Viking cruises. But that's what it looks like on the outside. On the inside, he cries in the shower and when asked why he's crying, he says he doesn't know. I ask if he'd like me to get in the shower with him, but he says no. So I sit on the toilet and just talk to him until he's ready to get out. He can dress as long as I select everything for him and lay it out on the bed. It takes him a long time to get everything on, but he can still do it. He socializes and is able to look like he's participating, but he really isn't if you look closely. He has difficulty following any conversation and is unable to respond when asked what was being talked about. He "rides along" but he really doesn't. We're booked on an Alaska cruise for August and today we talked through what excursions, if any, he might feel he'd like to do. He doesn't really care and decided that just being on the ship would be okay. I'm good with that, but I miss the "sharing" of experiences that create memories. Tonight I'm finally posting on this forum mostly because I don't want to burden friends with how I'm feeling. I think tonight is the result of several podcasts I listened to today while on my daily 2 mile walk. The podcasts are by Teepa Snow, an American woman who specializes in advice for carers of those with Alzheimers. I've learned from her that Roger will never again be the man he was five years ago. And that our life will never be what it was five years ago. And that try as I might, nothing will change that. He doesn't know that things have changed. That how I feel about him and our marriage has changed. I still love him deeply and will do whatever it takes to make the remainder of his life, however long or short that might be, the very best that it can be. But it's taking its toll on me. We are night owls -- and I've tried to keep his "schedule" to some degree, just to ward off the loneliness really. We go to bed around 1 am, and while I sleep soundly until the next day, he'll be up again watching TV at 3 am, 5 am, or 9 am, and then "sleep" until 2 pm in the afternoon. I've told him I feel like I'm married to a roommate who works nights. I'm sorry this is so long. I guess tonight I'm feeling the loneliness and hopelessness that this "long goodbye" has brought into my life, and as I don't want to burden my friends with my heartache, here I am.

 

[canary]

Hello @AussieLady

I'm glad you felt able to post. You will find many people who are in the same boat - my OH is at about the same stage except that he is totally deaf and has some other physical problems.

I love Teepa Snow, she manages to convey her advice clearly and with such humour. There comes a time when you suddenly realise that your situation is real and there is no going back. It is the start of acceptance. At the moment though, you are experiencing anticipatory grief when you are mourning the loss of your relationship, your old life and your hopes and dreams.

Just take each day as it comes and come on here to vent.
xx

 

[Campsie]

My heart goes out to you. Believe me, you are not alone. I've been there, it's so difficult. I'm much further down the road than you and your other half are just now. It does take it's toll on your nerves. Unfortunately, he won't get any better. It's a progressively worsening situation and you need nerves of steel for it. My O.H with Parkinson's and Lewy Body Dementia is now in a very good nursing care home. I nursed him for 12 years. I was exhausted, worn out, and teary. I'd began to hate him and realised at that point that I was not doing the best job for him. That wasn't an easy decision to make but it works. His condition needs round the clock care by the people who know how to do it. It takes a lot of staff to cater for his needs. He is now on end of life care and I visit him very frequently. The staff update me by telephone and one to one conversations. As much as you love your OH you also have to remind yourself that this too is your life and you don't get the years back. Fortunately, you have a way to go with him and cherish the 'better' times while you can. Try to enjoy your planned cruise and keep strong. I'm positive that there will be a lot of people on this site who will be able to support you through this with good advice. I look on here often just to see what I should be 'feeling' and to find out what the next step will be. Good luck and good health on your journey forwards.

 

[hillyjay]

Hello @AussieLady, you have every right to complain or moan or rant about your situation so go for it! It sounds like my husband might be a tiny bit behind yours in some aspects and about the same in others but I totally get what you mean about him appearing to be fine, can dress, shower, socialise and all the rest of it. Sounds ok, doesn’t it.
However, inside, indoors, you have to live with the side of it that others don’t see. My OH doesn’t cry exactly like that but when he cries he always says, when asked why, that he doesn’t know, just ‘Things’.
Mine too seems outwardly to be taking part in a conversation and socialising except…they aren’t if you know them as we do. As you say, they ride.
No, your husband can’t tell you of any preferences re excursions on your cruise because..he can’t really make decisions. Nor can my husband, in a good mood he’ll always say he doesn’t mind. In a bad mood he’ll say he doesn’t want to do anything and gets stroppy.

i still find it hard to come to terms with not having the conversations and discussions we used to, the planning together. He has no idea of the extent to which he’s changed either but you miss that part of your life together which has gone.

It’s so hard. The time has come where you’ll need this forum as a release and there’s lots here who will understand which well meaning friends don’t.

 

[BeeBeeDee]

Hello @AussieLady - I am in the same boat as you in that he appears to be ok and because he can dress (if I tell him what to wear), shower (if I tell him to), go to the toilet ok, takes the dog for a short walk and can be left on his own. I am lucky I guess, but I dont feel it
I miss my husband who took care of me and shared the burdens, decisions and fun of life. I have family close by who try to help but no matter what they do I don't have my strong intellingent husband anymore, I think I am still coming to terms with it really.
Type as many long messages as you wish - not only do they help you but they help the readers too.

 

[LynSH]

HI , I understand exactly how you feel, my husband has some of the symptoms, he 'rides' on other peoples' conversation, needs reminding about day to day things. And some days are harder than others. I find my loss of independence hard, I'm afraid to leave him for long, heaven knows what I would find when i get home. Also he gets very agitated if things go a bit wrong , we had a puncture last week, total panic until I sorted out a repair. So different from his past behaviour. Keep sharing, it helps us all.

 

[NoeB4711]

I've been a member of this forum for almost a year now. I come here and read your accounts of life with someone you love who has dementia and it comforts me that I'm not the only one caring for a husband whom I love deeply, but who is not the man he was five years ago, and will never be again. He's a diabetic so I also have to try and manage his blood sugar because he isn't able to any more. As well, while he was always something of a "hard a$$" in years gone by, somehow the dementia has changde him into someone who cries easily, can no longer make a decision as simple as ordering from a menu, talks to himself or mumbles constantly, and throws tantrums and screams when something minor doesn't go the way it should . And all of that's the part that I have been struggling with silently. I'm finally posting here because tonight I'm struggling to accept his mental deterioration, and while I have close and enormously supportive friends, they aren't living it. But I know you are. So here I am. I live in Dallas, Texas. I'm a young 70, and my husband is an "old" 83. He was diagnosed by our neurologist with dementia about 3 years ago. Unlike many of you - and this is where I feel like I have no legitimate reason to complain (sigh) - he's still able to shower, dress, and socialize. We still travel to my homeland of Australia, and on wonderful Viking cruises. But that's what it looks like on the outside. On the inside, he cries in the shower and when asked why he's crying, he says he doesn't know. I ask if he'd like me to get in the shower with him, but he says no. So I sit on the toilet and just talk to him until he's ready to get out. He can dress as long as I select everything for him and lay it out on the bed. It takes him a long time to get everything on, but he can still do it. He socializes and is able to look like he's participating, but he really isn't if you look closely. He has difficulty following any conversation and is unable to respond when asked what was being talked about. He "rides along" but he really doesn't. We're booked on an Alaska cruise for August and today we talked through what excursions, if any, he might feel he'd like to do. He doesn't really care and decided that just being on the ship would be okay. I'm good with that, but I miss the "sharing" of experiences that create memories. Tonight I'm finally posting on this forum mostly because I don't want to burden friends with how I'm feeling. I think tonight is the result of several podcasts I listened to today while on my daily 2 mile walk. The podcasts are by Teepa Snow, an American woman who specializes in advice for carers of those with Alzheimers. I've learned from her that Roger will never again be the man he was five years ago. And that our life will never be what it was five years ago. And that try as I might, nothing will change that. He doesn't know that things have changed. That how I feel about him and our marriage has changed. I still love him deeply and will do whatever it takes to make the remainder of his life, however long or short that might be, the very best that it can be. But it's taking its toll on me. We are night owls -- and I've tried to keep his "schedule" to some degree, just to ward off the loneliness really. We go to bed around 1 am, and while I sleep soundly until the next day, he'll be up again watching TV at 3 am, 5 am, or 9 am, and then "sleep" until 2 pm in the afternoon. I've told him I feel like I'm married to a roommate who works nights. I'm sorry this is so long. I guess tonight I'm feeling the loneliness and hopelessness that this "long goodbye" has brought into my life, and as I don't want to burden my friends with my heartache, here I am.

 

[NoeB4711]

Hello Aussie Lady - I can empathise with you, as my husband is now in his 2nd year of official Alzheimers Dementia (we suspected it was started a few years before that). It is so hard dealing with this condition, mentally, physically and emotionally. I'm 76 and my hubby 72, and under normal circumstances everything things seem to take longer than they used to! I get downhearted as I'm so behind with the housework, filing paperwork, bills etc., doing things that I really like (knitting, gardening) as so much time is spent 'clearing up' after him, sorting out things - like 'lost spectacles, or remote control', or getting the tv to work, and feeding him, trying hard to make sure he takes his various medication (which is an issue in itself!).
We don't have the same issues as you, but over the last 3 months things have deteriorated. My husband is in the 'early stages' and suffers mainly from speech and memory problems; however, he has severe mood swings, 'tantrums', and be extremely agressive verbally. Thankfully no physical aggression. He can wash and dress himself, make a sandwich and a cuppa, sort of hoover and mow the lawn, so that's good. He does get very bored, sits in his chair playing chess on his tablet, or endlessly watching the BBC news.
Early mornings, and towards the evening he goes downhill (sundowning I believe it's called). He gets bouts of depression, goes 'walkabout' without telling me, sometimes comes back very late; but the worst bit is he says he ''stood at the railway line, watching the trains go by - and thought 'it would be so easy to end it all' ''. I find that so upsetting for him to be feeling that way, and it makes me very sad too.
Fortunately well get the NHS 'dementia nurses' from the palliative care team visiting us monthly. We can chat to them individually or together. This is very helpful, and they are so gentle, kind and informative. I am able to tell them about how things are, which helps.
We don't really have a social life, and no close friends or family to speak of; and I find the isolation hard at times - with no-one to chat to, especially in the early hours! These support forums are such a good idea, as I don't want to burden my adult children chatting about this over the phone, they have enough to deal with. At least on the Forum there's no-one who emotionally close to us, so it's easier to 'let it all out', so to speak.
I wish I had some useful advice to give you, to help ease your burden, but this is a big learning curve for both of us. I do hope you have some friends or support group around you. The support we get from our NHS GP is brilliant. Can't fault them. I've also just 'registered as a Carer' with our local Council, and they have given me links to various services - like someone to help with the housework, etc. Not free, but at reasonable rates. I've also just found out about a local 'Care' company that operates a Companionship Service for people who are disabled. are elderly, or have dementia, etc. Again not free, but reasonanle fees. So I might use them at some time. They even sort out transport plans for a trip out, visiting family or even a holiday - and can escort the traveller too - which sounds wonderful.
Well, I've gone on for long enough - hope you get some support soon (either online or in person), as you are doing an extremely hard job, and it's so hard ... especially when we know it's not going to get any better. Certainly 'tests our patience' - and the 'for better, for worse' part of our wedding vows!
Meanwhile sincere good wishes sent to you, from the UK

 

[AussieLady]

Hello @AussieLady

I'm glad you felt able to post. You will find many people who are in the same boat - my OH is at about the same stage except that he is totally deaf and has some other physical problems.

I love Teepa Snow, she manages to convey her advice clearly and with such humour. There comes a time when you suddenly realise that your situation is real and there is no going back. It is the start of acceptance. At the moment though, you are experiencing anticipatory grief when you are mourning the loss of your relationship, your old life and your hopes and dreams.

Just take each day as it comes and come on here to vent.
xx

Thank you for your reassuring words. "Anticipatory grief" is a new phrase to me, but one that having heard it now certainly resonates. I just hope I can handle it.

 

[AussieLady]

My heart goes out to you. Believe me, you are not alone. I've been there, it's so difficult. I'm much further down the road than you and your other half are just now. It does take it's toll on your nerves. Unfortunately, he won't get any better. It's a progressively worsening situation and you need nerves of steel for it. My O.H with Parkinson's and Lewy Body Dementia is now in a very good nursing care home. I nursed him for 12 years. I was exhausted, worn out, and teary. I'd began to hate him and realised at that point that I was not doing the best job for him. That wasn't an easy decision to make but it works. His condition needs round the clock care by the people who know how to do it. It takes a lot of staff to cater for his needs. He is now on end of life care and I visit him very frequently. The staff update me by telephone and one to one conversations. As much as you love your OH you also have to remind yourself that this too is your life and you don't get the years back. Fortunately, you have a way to go with him and cherish the 'better' times while you can. Try to enjoy your planned cruise and keep strong. I'm positive that there will be a lot of people on this site who will be able to support you through this with good advice. I look on here often just to see what I should be 'feeling' and to find out what the next step will be. Good luck and good health on your journey forwards.

Thank you for understanding. As far as a nursing home is concerned, that's where my greatest fear for the future lies. Not so much putting him in a memory care facility when it becomes necessary, but how to pay for it. Here in the US we do not have any form of universal health care, and all our medical expenses are funded by private pay insurance. Private pay insurance (while expensive) doesn't cover long term care of any kind. So I'm looking at around US $8,000.00 per month should I ever need to move Roger into managed care. As he's nearly 84 now, three years diagnosed with Alzheimers/vascular dementia, I'm not sure how long he will live, but at almost US $100,000.00 per year for nursing home care, if he lives a long time, I can see it ploughing through our savings very fast. Hence my biggest fear.

 

[AussieLady]

Hello @AussieLady - I am in the same boat as you in that he appears to be ok and because he can dress (if I tell him what to wear), shower (if I tell him to), go to the toilet ok, takes the dog for a short walk and can be left on his own. I am lucky I guess, but I dont feel it
I miss my husband who took care of me and shared the burdens, decisions and fun of life. I have family close by who try to help but no matter what they do I don't have my strong intellingent husband anymore, I think I am still coming to terms with it really.
Type as many long messages as you wish - not only do they help you but they help the readers too.

Thank you. Sharing the burdens and decisions is what I miss also. I'm so tired of making ALL the decisions, big and small. I find myself getting especially short tempered when he asks me something so trivial like "Should I turn off the light?" Sigh.

 

[AussieLady]

Hello @AussieLady, you have every right to complain or moan or rant about your situation so go for it! It sounds like my husband might be a tiny bit behind yours in some aspects and about the same in others but I totally get what you mean about him appearing to be fine, can dress, shower, socialise and all the rest of it. Sounds ok, doesn’t it.
However, inside, indoors, you have to live with the side of it that others don’t see. My OH doesn’t cry exactly like that but when he cries he always says, when asked why, that he doesn’t know, just ‘Things’.
Mine too seems outwardly to be taking part in a conversation and socialising except…they aren’t if you know them as we do. As you say, they ride.
No, your husband can’t tell you of any preferences re excursions on your cruise because..he can’t really make decisions. Nor can my husband, in a good mood he’ll always say he doesn’t mind. In a bad mood he’ll say he doesn’t want to do anything and gets stroppy.

i still find it hard to come to terms with not having the conversations and discussions we used to, the planning together. He has no idea of the extent to which he’s changed either but you miss that part of your life together which has gone.

It’s so hard. The time has come where you’ll need this forum as a release and there’s lots here who will understand which well meaning friends don’t.

Thank you. I'm very relieved to now be participating in this forum.

 

[AussieLady]

Hello Aussie Lady - I can empathise with you, as my husband is now in his 2nd year of official Alzheimers Dementia (we suspected it was started a few years before that). It is so hard dealing with this condition, mentally, physically and emotionally. I'm 76 and my hubby 72, and under normal circumstances everything things seem to take longer than they used to! I get downhearted as I'm so behind with the housework, filing paperwork, bills etc., doing things that I really like (knitting, gardening) as so much time is spent 'clearing up' after him, sorting out things - like 'lost spectacles, or remote control', or getting the tv to work, and feeding him, trying hard to make sure he takes his various medication (which is an issue in itself!).
We don't have the same issues as you, but over the last 3 months things have deteriorated. My husband is in the 'early stages' and suffers mainly from speech and memory problems; however, he has severe mood swings, 'tantrums', and be extremely agressive verbally. Thankfully no physical aggression. He can wash and dress himself, make a sandwich and a cuppa, sort of hoover and mow the lawn, so that's good. He does get very bored, sits in his chair playing chess on his tablet, or endlessly watching the BBC news.
Early mornings, and towards the evening he goes downhill (sundowning I believe it's called). He gets bouts of depression, goes 'walkabout' without telling me, sometimes comes back very late; but the worst bit is he says he ''stood at the railway line, watching the trains go by - and thought 'it would be so easy to end it all' ''. I find that so upsetting for him to be feeling that way, and it makes me very sad too.
Fortunately well get the NHS 'dementia nurses' from the palliative care team visiting us monthly. We can chat to them individually or together. This is very helpful, and they are so gentle, kind and informative. I am able to tell them about how things are, which helps.
We don't really have a social life, and no close friends or family to speak of; and I find the isolation hard at times - with no-one to chat to, especially in the early hours! These support forums are such a good idea, as I don't want to burden my adult children chatting about this over the phone, they have enough to deal with. At least on the Forum there's no-one who emotionally close to us, so it's easier to 'let it all out', so to speak.
I wish I had some useful advice to give you, to help ease your burden, but this is a big learning curve for both of us. I do hope you have some friends or support group around you. The support we get from our NHS GP is brilliant. Can't fault them. I've also just 'registered as a Carer' with our local Council, and they have given me links to various services - like someone to help with the housework, etc. Not free, but at reasonable rates. I've also just found out about a local 'Care' company that operates a Companionship Service for people who are disabled. are elderly, or have dementia, etc. Again not free, but reasonanle fees. So I might use them at some time. They even sort out transport plans for a trip out, visiting family or even a holiday - and can escort the traveller too - which sounds wonderful.
Well, I've gone on for long enough - hope you get some support soon (either online or in person), as you are doing an extremely hard job, and it's so hard ... especially when we know it's not going to get any better. Certainly 'tests our patience' - and the 'for better, for worse' part of our wedding vows!
Meanwhile sincere good wishes sent to you, from the UK

My heart goes out to you. At least mine doesn't wander, although he does tend to get lost in a store sometimes. As for the "tantrums", yes, mine does that too, usually over the tiniest thing - he can't find BBC News on the TV so he starts yelling expletives. He's not physically violent, but has verbal outbursts that are very unnerving. We don't have anything like the NHS here in the USA, so I'm on my own. I envy you having visiting dementia nurses and council related services. I don't need help with housework or anything, but somebody to talk to in-person would go a long way to maintaining my sanity. That said, thank God I've found this forum, and even though I'm in another country, I'm already feeling considerable comfort from all these kind responses.

 

[Rishile]

Thank you. Sharing the burdens and decisions is what I miss also. I'm so tired of making ALL the decisions, big and small. I find myself getting especially short tempered when he asks me something so trivial like "Should I turn off the light?" Sigh.

You have made me realise how many questions like this that I have to answer every day. 'shall I close the door?'. 'Can I use this toilet?'. 'Are these my slippers?'. 'Is this my cup of tea?'

 

[maggie6445]

Mmm . Is not so much the questions that drive me crazy but his lack of understanding of what I've said.
Ask him to pass me an item and I get offered any thing but what I asked for. .
Ask him to take his jumper off and he straightens himself by pulling it down, ask him to lift his foot so I can put a shoe on and he says he is when he hasn't moved a muscle! Tell him it's time for bed
and he smiles and stays sitting in front of the t v .

The other morning at 5am ish he needed a clothes change after an accident. 15 minutes of asking him to take his vest off and no response . In sheer frustration I spotted scissors on the window sill and I cut the darn vest off him! He just looked at me and asked why I'd done that! ! Grrr

 

[AussieLady]

Mmm . Is not so much the questions that drive me crazy but his lack of understanding of what I've said.
Ask him to pass me an item and I get offered any thing but what I asked for. .
Ask him to take his jumper off and he straightens himself by pulling it down, ask him to lift his foot so I can put a shoe on and he says he is when he hasn't moved a muscle! Tell him it's time for bed
and he smiles and stays sitting in front of the t v .

The other morning at 5am ish he needed a clothes change after an accident. 15 minutes of asking him to take his vest off and no response . In sheer frustration I spotted scissors on the window sill and I cut the darn vest off him! He just looked at me and asked why I'd done that! ! Grrr

I really feel for you. While my husband isn't quite at that point, there's unquestionably an obvious lack of comprehension sometimes. And more than that, sometimes he (thinks) he hears something very different (and usually totally unrelated to anything) than what I actually said. So I get this strange answer that doesn't make sense, and when I ask him what he thinks I said and he tells me, I'm usually flabbergasted and wondering how on earth it's come to this. And I don't blame you one bit for cutting that darned vest off him! What's probably the worst about that situation is that he didn't really care that you did it. The apathy is infuriating.

 

[AussieLady]

You have made me realise how many questions like this that I have to answer every day. 'shall I close the door?'. 'Can I use this toilet?'. 'Are these my slippers?'. 'Is this my cup of tea?'

Oh, I know!!! And I find myself answering sarcastically. He says, "Should I open the garage door?" and I responsd "Er, well, yes, it's going to be hard to get the car out if you don't!"

 

[maggie6445]

Oh, I know!!! And I find myself answering sarcastically. He says, "Should I open the garage door?" and I responsd "Er, well, yes, it's going to be hard to get the car out if you don't!"

🤣🤣 Your reply made me laugh. Sarcasm is wasted on them isn't it? Makes you feel better though

 

[Silversally]

Mmm . Is not so much the questions that drive me crazy but his lack of understanding of what I've said.
Ask him to pass me an item and I get offered any thing but what I asked for. .
Ask him to take his jumper off and he straightens himself by pulling it down, ask him to lift his foot so I can put a shoe on and he says he is when he hasn't moved a muscle! Tell him it's time for bed
and he smiles and stays sitting in front of the t v .

The other morning at 5am ish he needed a clothes change after an accident. 15 minutes of asking him to take his vest off and no response . In sheer frustration I spotted scissors on the window sill and I cut the darn vest off him! He just looked at me and asked why I'd done that! ! Grrr

Well done for prompt action, Maggie. I would have done the same with the vest. Might have a problem though as my OH has become obsessed with hiding the scissors and knives - if they are in plain sight someone will come in and attack us with them, according to him. I did say they would probably bring their own!

 

[Blissy]

Lack of comprehension and misunderstanding what I say is part of my world as well. Patience needed and a sense of humour...Not always available!!!