How on earth with so many variables between individuals do you know what is stroke related and what is aging.
My husband changes hour to hour and day to day and I am left perplexed and stressed.
I’ve dug deep for understanding and patience, struggling quite honestly.
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How old is your husband and when did he have his stroke?
Does Alzheimer’s or Dementia run in his family?
Also, was it more severe than your TIA?
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Yes, hubby had quite a big stroke end of last June and has really been up and down recovery wise since then.
My son and I believe he may have had other strokes or Tia,s but of course no way to prove that as doctors are not interested in doing more scans because nothing would change treatment wise.
His father had Alzheimer’s and I do see similar behaviours but I don’t know if that’s just due to his age 78 years. He’s never been " young " for his age…rather the opposite of that makes sense.
I’m not handling this very well tbh, I know I need to be more compassionate and understanding.
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I’m 4 years post stroke and I can still get overwhelmed and fatigued at times, I dare say you do too. So I can understand where you’re coming from with not coping; you feel you want to run away at times; stop the world I want to get off. You need some respite! Do you ever get any breaks away on your own? You are not getting any younger either; you need some respite!
Have you discussed all this with his GP? TIA’s are common in those with Alzheimer’s! I think your next step should be to speak with his GP and get him referred to the memory clinic for assessment.
You can’t be more compassionate and understanding if you are burnt out yourself.
I can say it for you myself, if you want me to, he’s probably got Alzheimer’s.
Does he have any nutrient deficiencies, when did he last have his bloods checked?
I’m not a doctor, I can only speak from my own experience with Alzheimer’s. Both my own mum and my hubby’s dad had it, so I know how hard it can be. And the early onset of Alzheimer’s can be tricky to test and diagnose because the patient may present as perfectly “normal”, totally compos mentis, at the time of the examination. They have a tendency to put their best foot forward in the face of strangers.
Another thing you could look into are day centres you can take him to if there are any in your area, your GP surgery would know. They would provide activities and social interaction for him, even lunch. And that would give you some breathing space for some well earned “me time”.
Or…It could just be a combination of vitamin deficiency and the 2 steps forwards 1 step back order of stroke recovery we all experience that’s messing with all your heads.
Have a think, speak with your son and start the ball rolling by getting in to see his GP by hook or by crook if you have to 
In the meantime, keep talk here or if you’d rather talk to someone in person, there is always the Stroke Association’s Weekly Volunteer Calls volunteer calls. They can pair you up with another carer, someone else who is going through similar. And their Stroke Support Helpline: 0303 3033 100 can also help with the more practical advise if needed.
Only you can take care of you, so take care 
Lorraine
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If your husband’s stroke happened fairly recently it’s possible that he is experiencing some cognitive impairment due to fatigue and / or muddle and confusion. As you indicate, his alertness and ability to focus on what is being said and to respond appropriately vary. The part of the brain affected is important. What did a scan if it was done show? It is also possible that the stroke may have resulted in some longer-term cognitive damage, i.e. vascular dementia. When things are more hopefully settled it would be helpful to ask for a memory assessment to establish what damage has been done.
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@EmeraldEyes
I had a full panel of bloods done to check for any deficiencies and am giving him supplements where needed.
I spoke to the GP who is not at all interested since he accepted the memory test done by the stroke team which he passed by just one point.
It’s not just memory it’s strange behaviour and refusal to accept what we say.
I am struggling to motivate him again and he sleeps maybe too much but then on the odd day he will be up and doing something.
It’s definitely true he puts on a " show " for the OT,s and visitors.
Seems like a different person altogether.
I accept that is normal and afterwards he’s worn out so falls asleep.
He refuses to engage with brain exercises, crosswords, word search etc. Spends a lot of time reading scientific stuff online, I’ve no idea if he is understanding it because it’s not my thing but has always been his interest.
He should wear hearing aids and doesn’t so I have made an appointment with audiology for a check up just to try everything. He always hated them and rarely wore them pre stroke.
He likes me around 24/7 but I have started to go to bed early even when he gets cross with me because I am so tired I could cry.
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@DavidHearnden
Hubby’s stroke was almost 11 months ago, he was doing well to start with but definitely has slipped back and is infact probably worse than he ever was.
I don’t know where all this is heading but it is not good.
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@DavidHearnden
His was an ischemic stroke left side of brain and he was lucky that it seemed to affect his right side but speech and swallow etc was fine.
He recently passed the mental assessment by one point.
I was shocked because he got the day, date and year wrong but just scored enough by naming several animals and getting most of the name and address correct that he had to remember.
Some days I test him and he is 100% perfect other days he talks in riddles.
A friend rang yesterday to discuss the phone call he’d had from my man…he has known him since they were toddlers and was shocked at the babble coming from him.
Oh well, one day at a time.
I do appreciate the replies, thank you everyone.
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@Sonia158 had some similar issues with her husband, doing nothing but watch tv and such. But now a year or so on he is doing so much better, then again he is a lot younger than husband. It could be decomposition:
In the context of stroke, “decomposition” refers to the breakdown or weakening of previously made progress in recovery. It can occur when the brain’s “rewiring” process, or neuroplasticity, is threatened, leading to a temporary or sustained decline in function.
Decomposition in Stroke Recovery:
- Neuroplasticity and Re-wiring:
When a stroke occurs, the brain attempts to compensate for the damage by creating new connections and pathways. This process, known as neuroplasticity, can lead to functional recovery.
- Decomposition Challenges:
Sometimes, these new connections are not as strong as the original ones, and the brain may struggle to maintain them, especially if the person is tired, unwell, or under stress.
- Factors Contributing to Decomposition:
Factors like fatigue, illness, or stress can hinder the brain’s ability to maintain the new connections, leading to a temporary or sustained decline in function.
- Examples of Decomposition:
Decomposition can manifest as a temporary setback in physical rehabilitation, cognitive decline, or a return of certain impairments that were previously improving.
Decomposition in Lesion Pattern Analysis:
- Generative Lesion Pattern Decomposition:
This technique is used to analyze how cognitive impairments correlate with the specific patterns of brain damage caused by stroke.
- Hemispheric Lateralization:
Studies using this technique have revealed that lesion patterns in the left hemisphere are often associated with language and naming impairments, while right-hemisphere lesions are linked to visuospatial functioning and neglect.
- Mapping Cognitive Impairment:
This analysis helps to map out which brain regions are most responsible for specific cognitive losses after a stroke.
In essence, “decomposition” in the context of stroke refers to a setback in recovery due to various factors that hinder the brain’s ability to maintain new connections and pathways, while also being a term used in the study of cognitive impairments after stroke.
Lorraine
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Can appreciate how worrying this is for both of you. Stroke fatigue can be an ongoing problem. It is worth asking your GP to refer your husband for a memory assessment to try to identify what is going on.
I am a social worker and a stroke survivor and am happy to give whatever help I can.
Take care - David Hearnden
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@EmeraldEyes
Thank you so much for the effort you put into that information…I am so grateful because despite being an avid reader and researcher especially on anything health related I am currently in such a foggy place that I am incapable of sifting information.
Oh it’s all so muddled.
At least I am slowly learning to be more accepting and what will be will be 
The forum is an amazing place to come.
If only there were magic wands within this incredible group 
Thank you again. Ellie
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@DavidHearnden
Thank you for your response again.
I spoke to the GP again yesterday and was told since my husband passed the cognitive test done by OT he does not need to be referred to memory clinic and anyway the wait time is around 56 weeks !
I then called the stroke team and they will visit again on Friday to just chat about rehab exercises including brain exercise.
He will most likely be fine whilst the OT is here. It’s so frustrating, I should probably video his everyday behaviour but I don’t because it feels horrible to be trying to " prove " a negative rather than encouraging a positive.
I know that this is my job, I need to find a way to be better at it.
Right now I am writing this and he is just laying in bed staring at nothing so I must go and be cheerful and positive.
Thank you so much for your support.
Ellie
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Appreciate how difficult it can be trying to motivate someone whose mood is very low. Has the GP picked up on this and recommended any treatment? Some community stroke teams have attached psychology. Look after yourself.
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We’ve only seen the GP one time and basically he said with the stroke team on board he has nothing to input.
I am afraid my husband told the therapist that he doesn’t feel the need for an appointment with the psychologist and has no feelings of being down or depressed in fact he thinks he is fine.
The physio brought him a Zimmer which he said he felt nice and steady with but after she left he put it in a corner and doesn’t use it. He really thinks he’s managing alright.
I think we are lucky to have got a second chance with the rehab team but they will sign him off soon because they can’t do more if he doesn’t want to push himself.
My own health is challenging and it terrified me if I can’t take care of him.
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Old age is the biggest factor when recovering and how well you can recover from any major trauma. Purely because our bodies and organs are wearing out. It doesn’t really matter how fit and well and active you seem to be before a major trauma, you just don’t bounce back as well as in your youth or even in your 40’s, it ages you. Even a little scratch on your arm takes twice as long to heal, especially if you are on blood thinners 
You being an nurse, have mainly seen the aftermath in your patients, you rarely saw what the patients were like before they came into hospital, before their illness or trauma. So you rarely saw how much their illness/trauma changed them.
The tole it takes out of you personally, is so much more too, than if you were 40 years younger.
Here is @Sonia158 latest post, her husband had his stroke in Dec 2023, didn’t do much other watch tv, wouldn’t answer phone among other issues. But life is finally on the turn around now. But like I’ve said before, he’s a lot younger, so maybe it’s just more time recovering for your husband.
Lorraine
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@EmeraldEyes
As always you are right on the button.
Husband is doing the best he can for now, so am I.
Part of the problem is that I tend to compare how I am responding to my husband with how I would have responded to my patients when I was working and am ashamed that I don’t seem to have the same strength and compassion to keep repeating things over and over for example.
I hate myself for not being 110% able to cope with everything.
I am feeling so angry with myself and worried because I know I should be attending to some personal health issues but haven’t because I can’t leave my husband.
I have had some test results that need attention and I will deal with them, just not today…maybe next week.
Last night I was desperate for an early night ( I am most nights to be honest ) but hubby wanted to sit for longer on his computer. That resulted in him eventually coming to bed at 4 am. It’s often 1 , 2 or 3 o’clock am and he doesn’t understand that I can’t rest while he is up even when I go to bed I am on alert mode.
He can fall asleep anytime but I am losing sleep and getting irritable.
Sorry I know that’s not strictly in line with the usual posts here. Too much of me having a moan. I am sorry.
Thank you if you read this far.
Ellie
PS I hope I was a better nurse than I am a wife xx
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@elljay1 you are being too hard on yourself and you know from all that has gone on and what Lorraine and others have been advising us that if we as carers don’t look after ourselves, we will eventually end up not being able to help the ones we love and are caring for.
It is tough but you sometimes have to say “no” to your husband.
You should not be ashamed, nor should you hate yourself. In fact you should feel proud - not many people can do what you are doing and in very difficult circumstances.
Have a chat with your husband and if necessary lay down some ground rules - easier said than done you might say. I’ve had to do the same with my Mum. Like your husband, my Mum thinks she can have 24/7 care and she can snap her fingers (she can’t btw due to the stroke) and we’ll come running. To an extent this has happened because we did do that for a very long time and now she thinks that is the norm, but we (I am lucky I have a co-carer) are now tiring and in need of some “me time” and longer hours in bed to get our sleep.
I have on several occasions spoken frankly with Mum and explained that as much as we would like to be at her beck and call 24/7 there are times when this is not possible. I then ask her to confirm she understands what I have said and that she agrees. I can’t say for sure but from her eyes and her demeanour (she listens quietly) I get the feeling she understands and accepts.
Of course she is not in total control of her behaviour and so she will relapse but when this happens it is easier to ask her to wait.
Not getting enough sleep is going to affect you and you should try to make sure you get enough proper sleep. By coincidence, being in a similar situation myself (I don’t go to bed until 4 or 5 in the morning) I have today started having catnaps during the day to recharge. Hopefully I will keep it up. I suggest this might be something you might want to try.
Please do put priority on yourself - your husband will not suffer.
Be nice to yourself, treat yourself.
Please get the above out of your system and mind - your post is absolutely in line with the posts on this forum. This forum is for stroke survivors and for carers and it is for whatever you would like it to be (within the compliance and membership guidelines).
You moan as much as you like and please do not be sorry for letting off steam.
Get yourself a nice cup or Horlicks or a dram of whiskey, glass of wine or whatever and please get yourself off to bed on time 
Yes, I have read to the end and I want to assure you we will continue to read to the end and we are here to offer a shoulder any time you need one..
I am giving you a virtual hug
Take care of yourself.
Namaste|
P.S. I am sure you were an excellent nurse and I am sure you are just as good a wife if not better.
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Stop beating yourself up like that, you’re not superwoman. Unlike your nursing days, you are now in caring, nursing capacity 24/7 with your husband, with very few tea breaks let alone a good nights sleep.
As a nurse, you have professionalism and a certain degree of impartiality towards your patients to buffer and protect you from becoming too overwhelmed with emotions. Naturally you don’t have that protection with your loved ones, he’s your husband and you love him. There’s a reason why doctors can’t treat family My sister was a great nurse but not as patient when it came to our mother with Alzheimer’s. Fortunately there were plenty of siblings to share the burden with.
No one can sustain that level of pressure without going bang. You are human first and foremost, you are worried and you are stressed, you have good reason to feel that way and it’s nothing to be ashamed of. Prior to my stroke, I myself was under a great deal of pressure caring for 2 in-laws, one with Alzheimer’s and one with cancer, along with our own two children going through major exam years at school. My hubby did what he could to share the load but he was also working full time back then too. It’s a possibility that’s what brought on my stroke. I certainly know all about repeating 10 times or more. And my family knows it very well from my stroke, I’m surprised my hubby still has a full head of hair after everything he’s gone through with both his parents and I, bless him 
You need to give yourself permission to let up a little.
And that’s just it. While you husband’s is going through so much damage repair and relearning, he’s on a different sleep cycle to a normal healthy adult’s mind. It’s more along the lines of a baby’s sleeping pattern because both brains are going through the same but different kind of development. I know I was very much like that and it’s taken me 4yrs to get to the point of getting 8 full hours sleep, well, just about
I wouldn’t even bother going to bed before 4am and I might or might not get an two’s sleep in the beginning. Because the brain was doing whatever it was doing and I just went with the flow, and so did my family.
You need to learn to trust again, trust in your husband, and give yourself permission to relax. And this is your post, it can be whatever you want it to be 
New mums are advised to sleep when baby sleeps, maybe you should try it now and then
Lorraine
What type of sleeping pattern is your husband on:
Newborn babies have varied sleep patterns, typically sleeping anywhere from 11 to 19 hours a day, often in shorter periods due to feeding and diaper changes. While some may sleep through the night from 6-12 months, many will still wake up due to factors like teething or growth spurts.
Here’s a more detailed breakdown:
Newborns (0-3 months):
-
Sleep Duration: Newborns can sleep for 12-16 hours in a 24-hour period, but not in long stretches.
-
Sleep Cycles: They sleep in cycles of about 20-50 minutes, transitioning between active (REM) and quiet (NREM) sleep.
-
Day/Night: They don’t have a clear distinction between day and night sleep yet.
-
Wake-ups: They frequently wake for feedings, which happen every few hours.
Infants (3-6 months):
-
Sleep Duration: Daily sleep needs drop to 12-16 hours as they can go longer between feedings.
-
Longer Stretches: They may start sleeping for longer periods, and some may sleep through the night.
-
Daytime Naps: They might start having 2-3 daytime naps of up to 2 hours each.
Toddlers (6-12 months):
-
Nighttime Sleep: They typically do the bulk of their sleeping at night.
-
Possible Wake-ups: Factors like teething, growth spurts, illnesses, or sleep regressions can lead to nighttime awakenings.
-
Sleep Patterns: Some may still wake multiple times a night, while others may sleep through.
-
Sleep Training: Parents might consider more specific sleep-training strategies if needed.
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Great analogy and brilliant advice as always
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I was only saying yesterday to a friend that I feel like I am living half with a newborn baby and half with my father in law who we cared for for 15 years before his passing so what you said really resonated as always. Thank you.
We are 10 months in and I seem to have to re evaluate almost daily on this journey.
In fact we are lucky, hubby doesn’t have the degree of disability that many cope with and thankfully his eyes were never affected which is a blessing for sure.
I had a lovely dad and he was amazing when he found himself paralysed due to a spinal tumor. I was in the very fortunate position of being able to take 18 months away from work to care for him and it was such a special time for us.
I get cross with myself for not being as good with my own husband as I hopefully was with my prescious dad but again it is a different dynamic I guess.
We just have to keep going and I am so grateful for the support I get here.
The forum is my only outlet really so hugely important to me.
Blessings to you all for being amazing and offering your time and support.
Thank you too for the much needed x