Year 5 since diagnosis starts today.

[Agzy]

Year Five of my journal - living with dementia iPad version

Saturday February 1st 20120.

And so we enter our fifth year of living with Alzheimer’s Disease and leave the European Union and I know which affects us most!
To sum up how Pauline is this morning and how Brexit has become an issue to her let me explain. The television news programs are full of all of it and Pauline turns to me while eating her Weetabix and says, “ are we in or out of Europe?” I try to explain the transition process and her response is, “do we still have our Queen then?”
So it is that her memory loss and general confusion manifests itself and I register it as an example of decline and change but, in spite of these changes they are not my main worry at all as her mobility is the priority right now.
Her walking gait is now a shuffle and she needs a walking stick to venture outdoors and when using it her hand and arm shake alarmingly. We have more or less selected our next car having had her sit and exit 5 different cars at four dealerships which has both upset her and annoyed her.
Her sleep pattern, if you can call it a pattern, is also badly disrupted as she spent some three hours asleep in her armchair last night before waking and going to bed. Once there she quickly fell asleep but was awake and restless by 3am having been woken, she says, by more thoughts/dreams of her late son, Grahame, which is why she gets up and watches TV as she tells me this distracts her thoughts of him and helps calm her down.
Finally for this new chapter of our journey is her toilet/bowel issues as, after two or three days of not going, she yet again has the runs and this pattern is constant although her recall of pattern is vague and her belief is she always has the runs and each time blames it on a recent meal or component of the meal such as an egg or particular fruit. So life goes on.

 

[Grannie G]

It was my husband`s mobility which was a cause for concern @Agzy, also five years after diagnosis.

He was unable to appreciate the benefits of a stick and when we went out I ended up holding the stick in one hand and my husband in the other.

He also forgot he had mobility problems which resulted in falls when he got up in the night to go to the toilet.

Similarities but differences too.

 

[Louise7]

Just a suggestion but diarrhoea following a few days of constipation can be a sign of faecal impaction, which can be very uncomfortable (not to mention messy!). My Mum had this problem but the introduction of a daily glass of prune juice, and a couple of bowls of prunes a week, stopped this happening. It's better to keep someone 'regular' if you can as constipation can result in pain, distress and increased anxiety in those with dementia.

 

[Grahamstown]

@Agzy oh how your post resonated with me. Your post mirrors my experience with my husband, 55 years of marriage in March and we have been fortunate enough to have had a wonderful life together until his diagnosis two short years ago and this vale of tears. I have been unable to look at old memories but maybe now I can try. He has reached a similar point as your wife in a relatively short time and is now neither eating or drinking much, consequent bowel difficulties because there’s no bulk nor enough water drunk to help the Laxido work well. He sits on the toilet for a long time and I have to monitor him to get him off. He can still weight bear, just, and rarely gets off his bed let alone go out. But with increasing carer visits and respite for a week here and there, and ‘that book’, I am now more composed. Like you our lives have been dominated for the past three years by dementia not the B word, which pales into insignificance compared to my daily life. He watches the news all the time on his TV in his bedroom but I doubt he knows what it is about and frankly I don’t care if he likes to watch it. His speech is becoming poor, slurring and mumbling so it’s an unhappy picture. His natural courtesy and good manners still shine through when he meets either the carers or when friends pop in. He still has his lovely smile.

 

[White Rose]

Year Five of my journal - living with dementia iPad version

Saturday February 1st 20120.

And so we enter our fifth year of living with Alzheimer’s Disease and leave the European Union and I know which affects us most!
To sum up how Pauline is this morning and how Brexit has become an issue to her let me explain. The television news programs are full of all of it and Pauline turns to me while eating her Weetabix and says, “ are we in or out of Europe?” I try to explain the transition process and her response is, “do we still have our Queen then?”
So it is that her memory loss and general confusion manifests itself and I register it as an example of decline and change but, in spite of these changes they are not my main worry at all as her mobility is the priority right now.
Her walking gait is now a shuffle and she needs a walking stick to venture outdoors and when using it her hand and arm shake alarmingly. We have more or less selected our next car having had her sit and exit 5 different cars at four dealerships which has both upset her and annoyed her.
Her sleep pattern, if you can call it a pattern, is also badly disrupted as she spent some three hours asleep in her armchair last night before waking and going to bed. Once there she quickly fell asleep but was awake and restless by 3am having been woken, she says, by more thoughts/dreams of her late son, Grahame, which is why she gets up and watches TV as she tells me this distracts her thoughts of him and helps calm her down.
Finally for this new chapter of our journey is her toilet/bowel issues as, after two or three days of not going, she yet again has the runs and this pattern is constant although her recall of pattern is vague and her belief is she always has the runs and each time blames it on a recent meal or component of the meal such as an egg or particular fruit. So life goes on.

Interesting to read where your wife is 5 years after diagnosis. My partner has also entered the 5th year but quite different to your wife - he's had no clue or interest in Brexit or the December election, though he does know the Queen when he sees her on TV as he's always liked her. We used to have many political discussions but there's no conversation about anything anymore, he can understand very little of what I say to him and though he can be very talkative it's generally a monologue and difficult to follow what he's saying, he can just talk on and on with no input required from me! It sounds like your wife has more awareness and less confusion than my partner but he's healthy in body and can still walk reasonably well, though deteriorating. He generally sleeps well, just waking a couple of times in the night for the toilet, though if he wakes and can't go back to sleep there's no chance for me to sleep either as he'll keep tossing and turning for a couple of hours, he would never get up of his own volition, will only get up when I do. Keeping him occupied is one of my biggest headaches as he has no interest in anything except going out places. He can't dress himself anymore as everything goes on the wrong way round, this morning I found him trying to put his shirt onto his legs! Well let's see what this year brings!

 

[Agzy]

It was my husband`s mobility which was a cause for concern @Agzy, also five years after diagnosis.

He was unable to appreciate the benefits of a stick and when we went out I ended up holding the stick in one hand and my husband in the other.

He also forgot he had mobility problems which resulted in falls when he got up in the night to go to the toilet.

Similarities but differences too.

Aye, we have had the falls and she hates the stick and awaiting Physio assessment for advice on correct types of walking aid for the future. Pivotal time indeed.

 

[Agzy]

Interesting to read where your wife is 5 years after diagnosis. My partner has also entered the 5th year but quite different to your wife - he's had no clue or interest in Brexit or the December election, though he does know the Queen when he sees her on TV as he's always liked her. We used to have many political discussions but there's no conversation about anything anymore, he can understand very little of what I say to him and though he can be very talkative it's generally a monologue and difficult to follow what he's saying, he can just talk on and on with no input required from me! It sounds like your wife has more awareness and less confusion than my partner but he's healthy in body and can still walk reasonably well, though deteriorating. He generally sleeps well, just waking a couple of times in the night for the toilet, though if he wakes and can't go back to sleep there's no chance for me to sleep either as he'll keep tossing and turning for a couple of hours, he would never get up of his own volition, will only get up when I do. Keeping him occupied is one of my biggest headaches as he has no interest in anything except going out places. He can't dress himself anymore as everything goes on the wrong way round, this morning I found him trying to put his shirt onto his legs! Well let's see what this year brings!

Situations such as yours make me realise how lucky we are in how slowly has been the decline but still amazed at how individual this evil disease is.

 

[Agzy]

@Agzy oh how your post resonated with me. Your post mirrors my experience with my husband, 55 years of marriage in March and we have been fortunate enough to have had a wonderful life together until his diagnosis two short years ago and this vale of tears. I have been unable to look at old memories but maybe now I can try. He has reached a similar point as your wife in a relatively short time and is now neither eating or drinking much, consequent bowel difficulties because there’s no bulk nor enough water drunk to help the Laxido work well. He sits on the toilet for a long time and I have to monitor him to get him off. He can still weight bear, just, and rarely gets off his bed let alone go out. But with increasing carer visits and respite for a week here and there, and ‘that book’, I am now more composed. Like you our lives have been dominated for the past three years by dementia not the B word, which pales into insignificance compared to my daily life. He watches the news all the time on his TV in his bedroom but I doubt he knows what it is about and frankly I don’t care if he likes to watch it. His speech is becoming poor, slurring and mumbling so it’s an unhappy picture. His natural courtesy and good manners still shine through when he meets either the carers or when friends pop in. He still has his lovely smile.

And, sadly but inevitably our own lives also are consumed as a side dish.

 

[Agzy]

Just a suggestion but diarrhoea following a few days of constipation can be a sign of faecal impaction, which can be very uncomfortable (not to mention messy!). My Mum had this problem but the introduction of a daily glass of prune juice, and a couple of bowls of prunes a week, stopped this happening. It's better to keep someone 'regular' if you can as constipation can result in pain, distress and increased anxiety in those with dementia.

Pretty sure her toilet issues are caused by her diet of little food and almost non of quality ie no greens little fibre and overall a monotonous repetion of the same meals. As for prune juice she would throw it over me as the only fluid intake is Typhoon tea and lots of it!

 

[Olliebeak]

Once again I log on and the very subject on my mind is a thread on TP. I was reflecting that it is 5 years since my OH’s diagnosis so we are in year 6. His symptoms are nowhere near as bad as many TP posters and I think very similar to your partner White Rose, but today I have been wondering how long I can cope with the relentlessness of it all. The mad things he does, the fidgeting, the monologues of endless repetitive “I remembers”, which are becoming more unreliable. It sounds selfish but if someone could just tell me how long I have to live like this and how much worse it will get I could deal with it better.

 

[White Rose]

Once again I log on and the very subject on my mind is a thread on TP. I was reflecting that it is 5 years since my OH’s diagnosis so we are in year 6. His symptoms are nowhere near as bad as many TP posters and I think very similar to your partner White Rose, but today I have been wondering how long I can cope with the relentlessness of it all. The mad things he does, the fidgeting, the monologues of endless repetitive “I remembers”, which are becoming more unreliable. It sounds selfish but if someone could just tell me how long I have to live like this and how much worse it will get I could deal with it better.

Yes, as everyone says, if anyone but the carers really had a clue what it's really like to live with a PWD they would run a mile, the things you do for love! With my partner there is also a lot of negativity, which is also draining, there's: I can't, it doesn't work, I've got nothing, I'm dead and sitting with head down looking miserable - but it's impossible to keep him occupied all the time and though I do feel so sorry for him being in this position, I've had to harden my heart, I'm only one person and I'm not willing to dedicate my whole life to him. So today is housework day and my friend is coming for lunch - he's not going to like it at all but what to do!

 

[White Rose]

Situations such as yours make me realise how lucky we are in how slowly has been the decline but still amazed at how individual this evil disease is.

It's funny isn't it how we still try to see the positives, there's you thinking you're lucky you have a slow decline and there's me thinking I'm lucky that my partner still sleeps reasonably well and doesn't have too many toilet issues (Yet!). Ah well, must get on, the house isn't going to clean itself.

 

[Vitesse]

It's funny isn't it how we still try to see the positives, there's you thinking you're lucky you have a slow decline and there's me thinking I'm lucky that my partner still sleeps reasonably well and doesn't have too many toilet issues (Yet!). Ah well, must get on, the house isn't going to clean itself.

I agree. Yesterday, I found myself thinking that we’d had a lovely afternoon. What had happened? My husband tried to tell me about somewhere we’d been. His communication is almost totally indecipherable any more, but I eventually realised that he remembered us going to a dementia ‘making memories ‘ group about 3 weeks ago. He told me we had been singing, and even asked were we going again? I try any group I can find where we can go together, as that is the only way I get out and meet other people, and this is the first successful one, where I don’t have to drag him there. What a thrill to have him remember something recent!!! Like you, I think I’m lucky that I don’t have toilet issues, and the Risperidone has calmed him down. I’m not bad and then the mental health doctor tells me it could go on for years!!!!!!!!
‘

 

[Agzy]

I agree. Yesterday, I found myself thinking that we’d had a lovely afternoon. What had happened? My husband tried to tell me about somewhere we’d been. His communication is almost totally indecipherable any more, but I eventually realised that he remembered us going to a dementia ‘making memories ‘ group about 3 weeks ago. He told me we had been singing, and even asked were we going again? I try any group I can find where we can go together, as that is the only way I get out and meet other people, and this is the first successful one, where I don’t have to drag him there. What a thrill to have him remember something recent!!! Like you, I think I’m lucky that I don’t have toilet issues, and the Risperidone has calmed him down. I’m not bad and then the mental health doctor tells me it could go on for years!!!!!!!!
‘

My OH will not (and vehemently so) take part in any social activity and, other than family, is totally antisocial and hates mixing never mind taking part. I off course am very outgoing and love such activity so guess who gets disappointed all the time? Aye

 

[TillySmith]

My OH will not (and vehemently so) take part in any social activity and, other than family, is totally antisocial and hates mixing never mind taking part. I off course am very outgoing and love such activity so guess who gets disappointed all the time? Aye

 

[TillySmith]

My husband loves going to Singing for the Brain.

 

[Vitesse]

My husband loves going to Singing for the Brain.

I’ve tried a singing group at the local dementia day centre (carers can go along) but he didn’t enjoy it and we gave up. But he has enjoyed the singing at a couple of memory cafes recently, so perhaps I should try it again.

 

[White Rose]

I agree. Yesterday, I found myself thinking that we’d had a lovely afternoon. What had happened? My husband tried to tell me about somewhere we’d been. His communication is almost totally indecipherable any more, but I eventually realised that he remembered us going to a dementia ‘making memories ‘ group about 3 weeks ago. He told me we had been singing, and even asked were we going again? I try any group I can find where we can go together, as that is the only way I get out and meet other people, and this is the first successful one, where I don’t have to drag him there. What a thrill to have him remember something recent!!! Like you, I think I’m lucky that I don’t have toilet issues, and the Risperidone has calmed him down. I’m not bad and then the mental health doctor tells me it could go on for years!!!!!!!!
‘

Nice to have a few positive days, glad your husband likes the singing. Will it really go on for years - I'm just looking a year ahead, it's all I can cope with!

 

[Vitesse]

Nice to have a few positive days, glad your husband likes the singing. Will it really go on for years - I'm just looking a year ahead, it's all I can cope with!

I did tell the mental health doctor that if this went on for years, she’d have me sitting in the chair as a patient!!