anyone out there
- Thread starter tuffydawn
- Start date
I care for my OH 24/7. He got ill in his early sixties. Don't feel alone. Talking point is an excellent forum and TPs will give you loads of support.
Aisling
thank you how fast was the decline? some days i think his progression seem quite fast and other days not sure i am in year 4 so far seems an endless road ahead of me
Hi tuffydawn, my OH is only 53 and I am already finding it a struggle and he only in the early stages. I don't have any good advice but just try not to look to far ahead and try and make time for yourself. I know exactly what you mean when you say you feel so alone. I cannot really share any thoughts with him and I expect that is what you feel the most. It is the lack of empathy and the feeling of 'losing' the person you are married to. Do you have any Alzheimer groups near you that you can join. We have joined two and it does help. Also I go to a carers meeting once a month. You can talk to people that are in the same boat and it does help. Keep posting here, Everyone really understands what you are going through x
Hi love
OH got official diagnosis in 2008. I was worried a number of years beforehand and on doctors suggestion he was treated for panic attacks and referred to cognitive therapist for relaxation stuff. Then he was forgetting important stuff and I was in panic mode. Long story short I took him to see my doctor and at that first app Doc queried Alyz. Long wait for psychiatrist so doc got him private app. Immediately after psyc spoke to me and advised me to contact the area's psychiatry for the elderly. Doc got report and referred him. He was able to manage ok for about 3 years, then I had to take early retirement to care for him.
So here we are.
You have my support.
Virtual hugs from Ireland.
Aisling
I know how you feel !
Hi. I've just seen your blog as I don't access the forum very often. Although everyone is very supportive most are not looking after someone in the early stages and I can find it depressing.
My husband and soul mate was diagnosed about 3 years ago. He's a young 69 year old and I'm 64. We are quite an insular couple who prefer each other's company to socialising which doesn't help in the situation we are are in. We have no children together but I have 2 grown up daughters who do live in the area but both work full time and have their own families to look after. I don't tell them how hard it can be sometimes and how lonely I feel. Hubby is at the stage wher his memory is changeable but he never knows what day or month it is and can't go out on his own as he would get lost. We do have good days but mainly when we are just at home as anywhere else he gets disorientated and stressed. My problem is that I feel I'm losing him day by day and am already grieving. But I also get very frustrated and impatient and then I get angry with myself. Would be happy to be your 'friend' as it would be good to 'talk' to someone who's hubby is at a similar stage of Alzheimer's as mine.
Hi. I've just seen your blog as I don't access the forum very often. Although everyone is very supportive most are not looking after someone in the early stages and I can find it depressing.
My husband and soul mate was diagnosed about 3 years ago. He's a young 69 year old and I'm 64. We are quite an insular couple who prefer each other's company to socialising which doesn't help in the situation we are are in. We have no children together but I have 2 grown up daughters who do live in the area but both work full time and have their own families to look after. I don't tell them how hard it can be sometimes and how lonely I feel. Hubby is at the stage wher his memory is changeable but he never knows what day or month it is and can't go out on his own as he would get lost. We do have good days but mainly when we are just at home as anywhere else he gets disorientated and stressed. My problem is that I feel I'm losing him day by day and am already grieving. But I also get very frustrated and impatient and then I get angry with myself. Would be happy to be your 'friend' as it would be good to 'talk' to someone who's hubby is at a similar stage of Alzheimer's as mine.
My OH has recently been diagnosed with FTD. I think he has had this for a while, but it was dismissed as depression and marital problems. It is quite different from Alzheimers - he doesnt have any problems with his short-term memory and is well orientated in time and space (knows what day it is, knows who I am, passes the MMSE), but I am finding the apathy, emotional bluntness, angry outbursts and loss of skills difficult. He is now at the stage of losing language skills and we seem to be constantly talking at cross purposes.
I find this forum very helpful. It is based in USA, but has members from all over the world, many from UK http://www.ftdsupportforum.com/
I find this forum very helpful. It is based in USA, but has members from all over the world, many from UK http://www.ftdsupportforum.com/
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Anger and frustration
Hi
Following on from my previous message. We are currently on holiday (we can still manage that at the moment although it puts additional stress on me) but we have our good days. Had a couple of bad ones too!! OH likes his glass of wine or two which, under the circumstances, I feel I can't deny him, as if I could, but one too many he gets so angry with me about the slightest thing but when he realises he gets so sorry and says it would be better if he left me. It's so sad !! My emotions seem to go from being frustrated - bad tempered/impatient - guilty - sad - grieving and lonely. I miss ......... So many things.
Hi
Following on from my previous message. We are currently on holiday (we can still manage that at the moment although it puts additional stress on me) but we have our good days. Had a couple of bad ones too!! OH likes his glass of wine or two which, under the circumstances, I feel I can't deny him, as if I could, but one too many he gets so angry with me about the slightest thing but when he realises he gets so sorry and says it would be better if he left me. It's so sad !! My emotions seem to go from being frustrated - bad tempered/impatient - guilty - sad - grieving and lonely. I miss ......... So many things.
Hello Tuffydawn,
we are in a similar boat, my hubby was just 54 when diagnosed with Alzheimer's eighteen months ago and he's changed quite a lot, I'm working part time but I do every bit of running the house, finances, I now have to make all decisions etc etc and it's so draining at times I could scream & leave home!! On the plus side....... hang on,....I'm trying to find a plus side....hmm... Oh yeah things aren't to bad, we're closer than ever & I do have a great support network from family & friends and they understand my hubby well. I don't look to far forward and try to treasure him as much as I can. I think we are all aware of the future and would like a timescale as how long we've got but everyone is so different. Take care and you will always find someone to chat to on here. X X
Sent from my iPad using Talking Point
we are in a similar boat, my hubby was just 54 when diagnosed with Alzheimer's eighteen months ago and he's changed quite a lot, I'm working part time but I do every bit of running the house, finances, I now have to make all decisions etc etc and it's so draining at times I could scream & leave home!! On the plus side....... hang on,....I'm trying to find a plus side....hmm... Oh yeah things aren't to bad, we're closer than ever & I do have a great support network from family & friends and they understand my hubby well. I don't look to far forward and try to treasure him as much as I can. I think we are all aware of the future and would like a timescale as how long we've got but everyone is so different. Take care and you will always find someone to chat to on here. X X
Sent from my iPad using Talking Point
H i,
Don't feel alone try and find out where you can go together and meet people in the same position. Dementia can hit any age. My sister-in-law as been looking after her husband who had a stroke aged 55 and dementia as set in, she is the same age. She got him in day centres which give her a bit of quality time even just to sleep if she had a bad night with him, then she was ok to spend time with him when he got home without getting exhausted. I'm sorry to say six years later he had to go in care as he got aggressive and started having fits, she still goes everyday to see him. Nobody can tell you what to expect as everyone is different but on thing I know is at the end of the day we all seem to get through and there is always someone to talk too.
Stay strong and big hugs xxx
thank you for your response i know just how you feel we still have two grown up children living with us but in some ways that makes it harder for me as i feel their pain for the father they had but is now gone and they have very limited patience with him. When we are on our own in the day i can cope with the repetion and lack of any interest in life but i feel alone in life i guess and want it be over soon. i run the house and our business so am busy but just have no life at all very hard road we all travel along please keep in touch and use me freely to have a rant
hi i understand what you feel my oh has memory problems as well but the lack of empathy or interest in anything is awful and i now find it hard to remember him when he did care there is no conversations at all just the same old questions and answers if i try to chat to him he does not seem to follow it or is not interested very lonely life now
Trixxie..this is way off the topic, but I must say that I love the pic of you and your husband. It just makes me smile. Thanks
Peace, and that in abundance to us all. LoisJean
Help with understanding test scores
Hi was wondering if anyone could help my mum who is 60 took the mse test scored 19 and just done the ace-r test and scored 49 still not sure what all this means as its early days and she is still doing a lot on her own has anyone any advice on these scores?
Hi was wondering if anyone could help my mum who is 60 took the mse test scored 19 and just done the ace-r test and scored 49 still not sure what all this means as its early days and she is still doing a lot on her own has anyone any advice on these scores?
Understanding test scores
Hi there,
You didn't mention why your mum underwent these assessments because for some, the interpretation isn't something that is set in stone and much depends on the situation/circumstances and whether or not she has a treatable condition. It's also quite important to record how anxious or compliant the person was because these can also affect the score quite considerably.
The MMSE is one of those quick 'n easy screening assessments that tends to only identify difficulties when problems are more obvious. When the score is below average it would lead to a more comprehensive assessment. The Addenbrookes (ACE-R) is more sensitive to cognitive impairment but, as far as I know, although it is used in the younger person, it is only standardised for the over 65's. In the older person, the cut-off score for the ACE-R is 87/100 so a score of 49 is in the moderately impaired range. Within the assessment there are different categories - Attention (what is the day/date. where are you?), Memory (Can they remember something immediately after being told/ after practice/after a period of time/ with a prompt). Fluency (speed of thinking and way in which one thinks e.g. when asked to name as many animals as possible do you put them into categories or randomly name them), Spatial perception (how you perceive/identify things, can you copy shapes etc.) and language (reading/writing).
Different types of cognitive impairment tend to show a differing pattern so it's not just the overall score but the performance in each category that is quite important. eg Some people may show poor fluency and memory but perform well in other areas. Other people show difficulties in all areas. The individual category scores also tend to give an idea of what problems to anticipate in day to day life and should be linked with a more comprehensive functional assessment e.g. Poor spatial perception would preclude someone from driving and is often linked to difficulties in understanding how to perform a task/ an increased falls risk or tendency to wander/get lost. Poor memory may indicate the need to provide prompts. Poor fluency may indicate the need to keep things simple, take things slowly, reduce distractions etc. Ultimately, the screening assessment should be used as a guide and cannot compensate for a more detailed functional assessment - both of which would then be used to provide recommendations/ guidance.
Sorry to have woffled on a bit but hope it has helped.
Emm
Hi there,
You didn't mention why your mum underwent these assessments because for some, the interpretation isn't something that is set in stone and much depends on the situation/circumstances and whether or not she has a treatable condition. It's also quite important to record how anxious or compliant the person was because these can also affect the score quite considerably.
The MMSE is one of those quick 'n easy screening assessments that tends to only identify difficulties when problems are more obvious. When the score is below average it would lead to a more comprehensive assessment. The Addenbrookes (ACE-R) is more sensitive to cognitive impairment but, as far as I know, although it is used in the younger person, it is only standardised for the over 65's. In the older person, the cut-off score for the ACE-R is 87/100 so a score of 49 is in the moderately impaired range. Within the assessment there are different categories - Attention (what is the day/date. where are you?), Memory (Can they remember something immediately after being told/ after practice/after a period of time/ with a prompt). Fluency (speed of thinking and way in which one thinks e.g. when asked to name as many animals as possible do you put them into categories or randomly name them), Spatial perception (how you perceive/identify things, can you copy shapes etc.) and language (reading/writing).
Different types of cognitive impairment tend to show a differing pattern so it's not just the overall score but the performance in each category that is quite important. eg Some people may show poor fluency and memory but perform well in other areas. Other people show difficulties in all areas. The individual category scores also tend to give an idea of what problems to anticipate in day to day life and should be linked with a more comprehensive functional assessment e.g. Poor spatial perception would preclude someone from driving and is often linked to difficulties in understanding how to perform a task/ an increased falls risk or tendency to wander/get lost. Poor memory may indicate the need to provide prompts. Poor fluency may indicate the need to keep things simple, take things slowly, reduce distractions etc. Ultimately, the screening assessment should be used as a guide and cannot compensate for a more detailed functional assessment - both of which would then be used to provide recommendations/ guidance.
Sorry to have woffled on a bit but hope it has helped.
Emm
Hi Sjc
a warm welcome to TP - it's a good place to share experience
you'll find lots of information here so do have a mooch around
I guess you've had concerns about your mum for a while and she's had an appointment with her GP and the memory Clinic, so you're probably awaiting diagnosis?
I'm not too familiar with the range of the scores - might be best to put together a list of any questions and concerns you have and go back to her GP/the Clinic to chat things over -there's probably a follow-up appointment being organised to talk over the results and their implications
this may help
https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=260
sorry to seem a bit vague - I'm not a medic, and there's more to each person's situation than raw test totals
I hope you'll keep posting
best wishes
a warm welcome to TP - it's a good place to share experience
you'll find lots of information here so do have a mooch around
I guess you've had concerns about your mum for a while and she's had an appointment with her GP and the memory Clinic, so you're probably awaiting diagnosis?
I'm not too familiar with the range of the scores - might be best to put together a list of any questions and concerns you have and go back to her GP/the Clinic to chat things over -there's probably a follow-up appointment being organised to talk over the results and their implications
this may help
https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=260
sorry to seem a bit vague - I'm not a medic, and there's more to each person's situation than raw test totals
I hope you'll keep posting
best wishes
Talking to someone
I think I am in a similar position to you, although my husband is a little older, coming up to 74, but I am much the same age as you.
Mine doesn't know what day it is either and constantly has to be reminded what is he doing each day. He is physically active still, playing golf and tennis but I have to make the arrangements for him as he can't retain information for long enough,if at all. He can get himself to familiar places ok, but won't go anywhere he doesn't know, as he cant follow instructions or set a sat nav. I get cross too when I have answered the same question 6 times a day, but I am gradually learning to be patient. So far we can only get the doctors to say he has mild cognitive impairment, but if they were living with him they would know that it's more than that!
I find lots of hugs help, and we try to do lots of things together, even if it's only gardening or a walk to the paper shop!
Good luck
I think I am in a similar position to you, although my husband is a little older, coming up to 74, but I am much the same age as you.
Mine doesn't know what day it is either and constantly has to be reminded what is he doing each day. He is physically active still, playing golf and tennis but I have to make the arrangements for him as he can't retain information for long enough,if at all. He can get himself to familiar places ok, but won't go anywhere he doesn't know, as he cant follow instructions or set a sat nav. I get cross too when I have answered the same question 6 times a day, but I am gradually learning to be patient. So far we can only get the doctors to say he has mild cognitive impairment, but if they were living with him they would know that it's more than that!
I find lots of hugs help, and we try to do lots of things together, even if it's only gardening or a walk to the paper shop!
Good luck
Belizzie please tell your family.
I'm a child of 3 , my dad has dementia , my mum wouldn't tell me u til I pushed her so far into telling me. Now she tells me everything, she has someone even if it's on the end of the phone to listen , to moan at , vent , whatever . I know when she isn't being honest with me by voice now .
Ring me
I'm a child of 3 , my dad has dementia , my mum wouldn't tell me u til I pushed her so far into telling me. Now she tells me everything, she has someone even if it's on the end of the phone to listen , to moan at , vent , whatever . I know when she isn't being honest with me by voice now .
Ring me
Hi other half is 63 diagnosed at 58, I am now 52. So quite similar ages. At first other half just had short term memory losses lots of repeated questions however he was still able to cook and take our younger son to nursery. This lasted about a year and half then slowly he stopped cooking just helped me when i was kitchen. Cutting the grass, hoovering and other chores were only carried out it I took out the appliance and had set ready to work. We managed to go on holiday up until last year summer obviously each year it became increasingly more difficult to the point now I know other half would not be able to cope with the flight, new surroundings and the daily activities. Last year November we hit crisis point with everthing changing he became aggressive and started running away refusing medication, refusing food. He was put anti depressants and other medications which did not really control the situation. We were at breaking point even considered sectioning him however in January he had 2 seizures in a space of a week (which we now think was due to all the medication) he was then put on haliperidol an anti physcotic drug since being on this medication he has become subdued and the aggression stopped. It is not an ideal situation but he is so manageable. He has lost a stone in weight and and I struggle keeping him hydrated he is at the moment constipated due to lack of food and water. He is now on haleperidol 1 mg twice and an antidepressant called sertraline 25 mg at night and 10 mg of mementine in the morning with the view to increase the sertraline and reduce the haliperidol. I still cannot believe where we are with his illness from pre November. I am literally doing everything for him putting him on toilet, cleaning him putting his clothes on and directing him. I now employ someone to sit with him whilst I am at work he is no trouble just wanders around quietly or falls asleep wherever he sits. It is so sad to see him like this we are not certain if its the haliperidol which makes him seem worse than what he is or its the disease. The only thing I am grateful for is that he is allowing me to look after him we still see a few signs of verbal abuse which are getting less and less he talks so little somedays he does not respond to any converstion others he says one or two things. I know everyone is different but if you are the early stages fit in all the things you want to quickly also get all the legal stuff done immediately no one can for see the future the only thing we know is things are only going to get worse to what extent we don't know so enjoy the good days.........everynight I tell him I love him he normally responds with a nod or says he does not love me then I ask him if he loves our younger son and so far he always says yes, this please my son so much I don't feel upset I am so happy at least he remembers his feelings for the little man...
Pacing, anxiety and restlessness
My wife has recent,y been diagnosed with Alzheimer's, she has just turned 65. She insists on going out somewhere every minute she is awake, when we are in the house she will pace room to room constantly asking when we are going out. She sees phantoms and holds conversations with them telling me how sad these people are. I am over 70 and do not have the energy I used to have and sometimes cannot physically keep up with her energy levels. I have tried Kalms to help her to settle but these do not seem to have an effect. Any advice will be welcome.
My wife has recent,y been diagnosed with Alzheimer's, she has just turned 65. She insists on going out somewhere every minute she is awake, when we are in the house she will pace room to room constantly asking when we are going out. She sees phantoms and holds conversations with them telling me how sad these people are. I am over 70 and do not have the energy I used to have and sometimes cannot physically keep up with her energy levels. I have tried Kalms to help her to settle but these do not seem to have an effect. Any advice will be welcome.
