Wanted to explode!!

Margaret59

Registered User
Apr 4, 2017
132
0
Yorkshire
I have been with my husband for over 18 years. I am convinced that he has suffered from undiagnosed aspirers/autism/OCD now showing itself or being diagnosed as Alzheimers.

I am keen to "understand" for my own sanity I think more than anything the links, if any, as many people I speak to do not believe me. But I know I am right. Luckily i have documented most incidences as at one point my other half tried to convince me that I had Alzheimers and not he!

I cannot lie my life with my husband has been a mixture of joy and difficulty. I have spent most days thinking "it will be ok tomorrow" but tomorrow just got worse and worse.

He was also very controlling and it is only now that we are separated that I can see clearly how unhealthy our relationship was - me clinging to the support of an older man as I had had a damaged childhood/adulthood, he clinging to the support of a younger, positive, lively woman who could "help" him through life.

Right now we have a happy friendly relationship and I want to learn more to help him through his diagnosis.

Somebody asked me the other day - what do I want? I suppose I feel guilty that I did not get him diagnosed sooner but instead buried any issues I saw in him and protected him from himself.

Thank you.

Hi Bethany England,
We all try to protect our loved ones and don't want them to go through any anguish and pain. I also thought that nobody would believe me. Felt vey guilty as if I had over exaggerated things. On the advice of members on this forum I too kept a diary. On the days when my OH appeared to be more stable I began to have doubts that his illness was as bad as I had originally thought. Looking back in the diary I realised that was not the case.
I have read so many articles about different forms of dementia and literally felt as if I was going to go crazy looking for answers and trying to diagnose whats wrong with him. A lot of the symptoms seem to overlap into another form of the illness for example my OH is also very shaky. ??? Parkinson's with Dementia. Another member on TP messaged me today and asked if I had thought about the possibility of Lewy Body Dementia. Apparently the symptoms are very similar.
I do hope that you find the answers you are looking for.
I am very new to all of this but keen to learn as much as I can. Finding Talking Point has been a god send as there are no end of wonderful people on here willing to offer support and advice based on their own experiences.
Take care,
Love and hugs,
Margaret59 x
 

Everton Annie

Registered User
Feb 25, 2015
111
0
Hatfield Hertfordshire
Bethany England I totally identify with you. Two of our sons have Asperger's and we are convinced (my sons and I), that my husband is undiagnosed and my marriage has been tricky at times and I was unclear at first whether it was nature or nurture however over the past 20 years it has been very obvious. Clearly doesn't change how I feel about my husband but AD does seem to exacerbate the autistic behaviours, lack of empathy in particular. I truly don't believe diagnosis would have changed anything. He's just gone from aspie dad to dementia dad sadly. He managed a long relationship with me and maybe that was the key for him. Doesn't change my feelings and love for him other than as said in a previous thread it now feels like the love and care I have for my children.
 

MaNaAk

Registered User
Jun 19, 2016
11,754
0
Essex
Thanks everyone for replying to my post. Yes I suppose it is hard for people to know what to say and it probably wasn't meant in a bad way. It is so so good to come onto this forum and be able to get it all out of my system.
Love and hugs to all
Margaret x

Dear Margaret,

I've just found your thread and I would like to say that after dad's diagnosis I tired to tell one of my friends from orchestra and she said 'Sorry I just need to have a quick word with .................. (someone else)! Therefore I thought let's pretend I never tried to mention it and since then we have carried on as normal. Unfortunately like the shopkeeper that I mentioned in another thread they could end up as carers or sufferers themselves.

MaNaAk
 

Margaret59

Registered User
Apr 4, 2017
132
0
Yorkshire
Dear Margaret,

I've just found your thread and I would like to say that after dad's diagnosis I tired to tell one of my friends from orchestra and she said 'Sorry I just need to have a quick word with .................. (someone else)! Therefore I thought let's pretend I never tried to mention it and since then we have carried on as normal. Unfortunately like the shopkeeper that I mentioned in another thread they could end up as carers or sufferers themselves.

MaNaAk
Hi MaNaAk,
Thank you for your message. Yes it's pretty much the same as when people pass away. You can be walking along the path and see someone at the other side of the road who you know. They may acknowledge you briefly with a wave but do not cross over to speak to you. Do they genuinely not know what to say?!! Sorry would be a good start.

Then again, on the other hand, you get people who says things that hurt or upset you and you wonder why they bothered to say anything at all.
One of the sayings I always use is "You never know what is around the corner".

It is sad to say that at some point or another a lot of us will have to deal with a loved one or partner or even ourselves being diagnosed with Alzheimer's, Dementia or some other illness. Perhaps if people put themselves in our shoes and realised what we are going through but these days so many have such busy lives and don't have the time.

This past week I have been glad to see all the adverts and discussions about Dementia on TV. My OH was amazed to see that members from one of the football teams from a long way back had made such a wonderful effort to highlight Dementia due to two of their old team mates being diagnosed with it. I think it was a help to him too in that he know seems to understand that no matter who you are, what your background is or even what age you are, Dementia can affect you.
Love and hugs,
Margaret59 x
 

Chuggalug

Registered User
Mar 24, 2014
8,007
0
Norfolk
While we're on the topic ... ! .... the other thing that has surprised me is that ever since I told mum's remaining friends (as in they are all elderly, so not many left now) she has dementia, most don't call. I'm still here and mum is still alive. It's almost like they are scared they'll catch it over the phone line! They could still call and speak to me and ask how mum is, but very few do. So, what do I do when the inevitable happens? Do I even bother to tell them? If they pitched up saying how sorry they were, I'd be tempted to ask them why they didn't call when mum was still alive. But, maybe I should be more understanding and remember that before this happened to my own mother I had no idea how awful it was either ...

Hiya Marnie; When things were all right here at home, the bike club 'friends' hubby had met popped in. They used to sit at our table, eat and drink and be a normal crowd. One of them took up preaching!

Soon as hubs became unwell, none of that lot ever visited him again, and neither did certain other people we knew. Nobody wanted to know.

Last week, when I spoke to someone to tell them hubby had died, he asked me if a couple of those he was still in touch with from the club ought to be told and I said straight away: no! If they didn't want to know him when he was ill, I didn't want to include them in anything else now I'm alone. I guess it was just a gut reaction. I can't stand insincerity. It makes people think they can continue walking all over you. That is no longer an option, I'm afraid. You must do as you feel.
 

Clunchman

Account on hold
Dec 6, 2016
286
0
.
Chuggalug I understand your feelings completely . Biker mates were always here, since dementia, never seen but one who calls in about twice a year and 'phones once a month.
My attitude? Anyone can walk out of my life. Their choice. But my choice if they come back into it, and that is unlikely.
 

Chuggalug

Registered User
Mar 24, 2014
8,007
0
Norfolk
Chuggalug I understand your feelings completely . Biker mates were always here, since dementia, never seen but one who calls in about twice a year and 'phones once a month.
My attitude? Anyone can walk out of my life. Their choice. But my choice if they come back into it, and that is unlikely.

Yeah, you're right, Clunchman. I don't feel bad about it, but then, someone else rang today from another group who we had a lot of contact with before things changed. I told her about hubby and all the usual excuses started again. You know what? Save it! If she really cared and couldn't get here for the Wake, whenever we have it, I'd buy the woman a taxi ride. Just tell me you wanna come and join in, but no. Just excuses.

Save 'em. I don't need to hear 'em!

Today is the first time I've actually realised what I wake up with every morning. It's a feeling of peace, and I'm extremely relaxed. It's noticeable now, because I've never had it happen before. Happiness, yes. I've had that before, but not this all-enveloping peace. It's very different, and different enough to be noticeable. Happiness is dependent on things going right. Peace isn't. That comes from God Almighty. I don't need to complain any more, but I certainly know who I want in my life, and who I don't.
 

MaNaAk

Registered User
Jun 19, 2016
11,754
0
Essex
Hi MaNaAk,
Thank you for your message. Yes it's pretty much the same as when people pass away. You can be walking along the path and see someone at the other side of the road who you know. They may acknowledge you briefly with a wave but do not cross over to speak to you. Do they genuinely not know what to say?!! Sorry would be a good start.

Then again, on the other hand, you get people who says things that hurt or upset you and you wonder why they bothered to say anything at all.
One of the sayings I always use is "You never know what is around the corner".

It is sad to say that at some point or another a lot of us will have to deal with a loved one or partner or even ourselves being diagnosed with Alzheimer's, Dementia or some other illness. Perhaps if people put themselves in our shoes and realised what we are going through but these days so many have such busy lives and don't have the time.

This past week I have been glad to see all the adverts and discussions about Dementia on TV. My OH was amazed to see that members from one of the football teams from a long way back had made such a wonderful effort to highlight Dementia due to two of their old team mates being diagnosed with it. I think it was a help to him too in that he know seems to understand that no matter who you are, what your background is or even what age you are, Dementia can affect you.
Love and hugs,
Margaret59 x

Hello Margaret!

Yes! I've seen the adverts as well and they are brilliant but what a morning I've had today! One of dad's hearing aids is probably broken and I've had to tell him three times that I am going to make an appointment to have his six monthly hearing test but apart from that I had to remind him that the diabetic medication is his and it was prescribed for him by our GP! It is not prescribed by me, his unqualified daughter and because donepezil was prescribed by his consultant it doesn't make it more important than his other medication which is what he tends to think.

We have had other strange conversations today but what I can't believe is that when we came out of one of our local Indian restaurants today he recognised one of our old neighbours and I didn't so I think I am losing my mind! It also pleased him when I said I wonder who really has alzheimers. Sometimes I think that we carers are probably becoming much more intellectual as we try to decipher what our loved ones are trying to communicate and because of that we are growing stronger mentally!

MaNaAk
 

Margaret59

Registered User
Apr 4, 2017
132
0
Yorkshire
Hello Margaret!

Yes! I've seen the adverts as well and they are brilliant but what a morning I've had today! One of dad's hearing aids is probably broken and I've had to tell him three times that I am going to make an appointment to have his six monthly hearing test but apart from that I had to remind him that the diabetic medication is his and it was prescribed for him by our GP! It is not prescribed by me, his unqualified daughter and because donepezil was prescribed by his consultant it doesn't make it more important than his other medication which is what he tends to think.

We have had other strange conversations today but what I can't believe is that when we came out of one of our local Indian restaurants today he recognised one of our old neighbours and I didn't so I think I am losing my mind! It also pleased him when I said I wonder who really has alzheimers. Sometimes I think that we carers are probably becoming much more intellectual as we try to decipher what our loved ones are trying to communicate and because of that we are growing stronger mentally!

MaNaAk

Hi MaNaAk,
I know exactly what you mean. My OH constantly questions me about his medication. Does he really need to take it, will it do any good and what was it for again??
As soon as I tell him that my daughters, (one of whom is a C.PN ) have said that he should take it and that it will help he is quite happy.
I think tiredness makes us occasionally feel so confused about things and perhaps forget someone or something that we would normally know.
I don't know if you read my post where I spoke about filling in forms at the Memory Clinic. My mind literally went blank.
I hope you get the hearing aid problem sorted out soon
Love and hugs,
Margaret59 x
 

MaNaAk

Registered User
Jun 19, 2016
11,754
0
Essex
Hi MaNaAk,
I know exactly what you mean. My OH constantly questions me about his medication. Does he really need to take it, will it do any good and what was it for again??
As soon as I tell him that my daughters, (one of whom is a C.PN ) have said that he should take it and that it will help he is quite happy.
I think tiredness makes us occasionally feel so confused about things and perhaps forget someone or something that we would normally know.
I don't know if you read my post where I spoke about filling in forms at the Memory Clinic. My mind literally went blank.
I hope you get the hearing aid problem sorted out soon
Love and hugs,
Margaret59 x

Hi! Margaret,

I totally misunderstood the form in the memory clinic I thought I was filling in the form and giving the consultant an idea of the extent of dad's dementia but it was only a couple of days after dad's last appointment that I realised that I was giving myself points on my level of stress! Also some of the questions weren't appropriate for me at the time!

Over the last couple of days I couldn't get dad to go out for his daily walk because he kept complaining about his feet and also there was the problem with his hearing aid. Anyhow I have managed to get an appointment for Thursday about his hearing aid so he should feel better after that. Anyway it's a good thing that you've got a daughter who is a nurse because that is one way of getting your OH to take his medicine. I usually say that the diabetic medicine is the GPs medicine. However he is at the moment trying to get out of wearing his compression socks because he finds them uncomfortable so I am thinking of getting some in a different colour so that he doesn't realise that they are infact the same socks!

MaNaAk
 

LadyA

Registered User
Oct 19, 2009
13,730
0
Ireland
Hello Margaret!


We have had other strange conversations today but what I can't believe is that when we came out of one of our local Indian restaurants today he recognised one of our old neighbours and I didn't so I think I am losing my mind!

MaNaAk

Any time I would forget something, my husband used to pounce on it gleefully, and say " Ha! YOU must be getting Alzheimer's disease!" and saunter off with a smirk on his face!
 

MaNaAk

Registered User
Jun 19, 2016
11,754
0
Essex
Any time I would forget something, my husband used to pounce on it gleefully, and say " Ha! YOU must be getting Alzheimer's disease!" and saunter off with a smirk on his face!

Dear Lady A,

It is lovely to read this post after having spoken to a solicitor and been reminded that I could lose the house to pay for dad's care. Anyway we both laugh when I usually say perhaps I should go and see the doctor as well but with regard to the house like most carers I am planning to look after dad for as long as I can even if it means carers day and night. I have a friend whose dad's house was partly owned by a bank because of paying for the care of his wife and I will be finding out more about this. I realise that I will have to deal with the house issue but meanwhiile I am getting on with life.

MaNaAk

PS: We carers have all got this inner strength!
 

Annypurple

Registered User
May 6, 2015
44
0
Invisible .....

This is so helpful because I often feel invisible by the way people ask "how is OH" and never "how are you" as if I don't count, as if just as you write, as if he is the only one with the disability - as a carer (and like you I am 'devoted and in for the long-haul) my life has completely changed and whereas he is spared the isolation, exhaustion, physical work of it all, I am not and this is never referred to.

I have lost family and friends because I've challenged their behaviour towards me, things they've said, not said, done, not done. I find the stress of holding onto the anger I feel is bad for me and so I distance myself to save that happening. I'm less anxious because people who won't/can't support me are no longer in my orbit. I've let them go.

But I am made to feel the 'bad' person for doing this. So, no only 'don't ask after me' but allow me to step back - I have become more isolated but paradoxically, more content and determined to keep only the positive people in my orbit.

It's easy to feel I am alone in this.








QUOTE=Margaret59;1404091]A friend of mine recently commented on how she was so sad that my OH's life had turned out the way it has.
Was I just feeling sorry for myself or what because I really wanted to say "what about me, what about my life?"
Is it that some people just don't understand that WE as carers have also had our lives turned upside down too???
I really had to bite my tongue and let the comment go over my head. I didn't want her to think I was been selfish by thinking about myself too.
Yes I love him and yes I would do anything for him but I also know that he will become more and more dependent on me and my life will never be the same again. However, I do not begrudge him one minute of my time.

Through Talking Point I am learning to understand so much more about the illness and your strength is giving me the strength that I need.
Love to all xx[/QUOTE]
 

Margaret59

Registered User
Apr 4, 2017
132
0
Yorkshire
Hi! Margaret,

I totally misunderstood the form in the memory clinic I thought I was filling in the form and giving the consultant an idea of the extent of dad's dementia but it was only a couple of days after dad's last appointment that I realised that I was giving myself points on my level of stress! Also some of the questions weren't appropriate for me at the time!

Over the last couple of days I couldn't get dad to go out for his daily walk because he kept complaining about his feet and also there was the problem with his hearing aid. Anyhow I have managed to get an appointment for Thursday about his hearing aid so he should feel better after that. Anyway it's a good thing that you've got a daughter who is a nurse because that is one way of getting your OH to take his medicine. I usually say that the diabetic medicine is the GPs medicine. However he is at the moment trying to get out of wearing his compression socks because he finds them uncomfortable so I am thinking of getting some in a different colour so that he doesn't realise that they are infact the same socks!

MaNaAk

Hi MaNaAk
Sorry for the delay in replying to your message.
Did you manage to get the socks in a different colour?
I had a bit of an issue with tablets again. I had asked GP for a further prescription for Citalapram for OH and after talking with her she decided to increase the dosage. Would you believe it --- he actually noticed that they were BIGGER in size than the previous ones. I got round it by saying that they must have come from a different pharmaceutical company.
Ive been quite miserable this last week, have been tired but just not unwinding enough to settle when I get to bed (hence the reason Im logged on at this time of morning)
Im in the bad books again ref OH not been allowed to drive plus he is still adamant that he would have done better at the memory clinic if he had been told what it was going to be like!!! He seems to have been in denial quite a lot this week.
I decided yesterday to see how my OH would get on with a game we used to play on the laptop. He was always quite adapt at it and could complete it in roughly 7 mins. Today, after nearly 50 mins he was nowhere near completing it. I know it sounds terrible but I really hoped that because of this he might understand that he is not as able as he used to be.
This morning he informed me that he wasnt happy about having to queue for the bathroom and that it could be a bit awkward with these "other" people in the house as sometimes he might get up in the middle of the night and not have any clothes on. He "dried" all the dirty dishes and put them away in different cupboards and I have also had to retrieve endless items from the rubbish bin which he has thrown away. Ive given up on telling him that the pink dressing gown he insists on wearing is not his and that he should wear his thermal top underneath his clothes rather than the reverse. Oh dear, I am having a right good moan here, sorry.
Heres to the start of a new week and fingers crossed my mood will improve.
Love and hugs,
Margaret59 xx
 

MaNaAk

Registered User
Jun 19, 2016
11,754
0
Essex
Hi MaNaAk
Sorry for the delay in replying to your message.
Did you manage to get the socks in a different colour?
I had a bit of an issue with tablets again. I had asked GP for a further prescription for Citalapram for OH and after talking with her she decided to increase the dosage. Would you believe it --- he actually noticed that they were BIGGER in size than the previous ones. I got round it by saying that they must have come from a different pharmaceutical company.
Ive been quite miserable this last week, have been tired but just not unwinding enough to settle when I get to bed (hence the reason Im logged on at this time of morning)
Im in the bad books again ref OH not been allowed to drive plus he is still adamant that he would have done better at the memory clinic if he had been told what it was going to be like!!! He seems to have been in denial quite a lot this week.
I decided yesterday to see how my OH would get on with a game we used to play on the laptop. He was always quite adapt at it and could complete it in roughly 7 mins. Today, after nearly 50 mins he was nowhere near completing it. I know it sounds terrible but I really hoped that because of this he might understand that he is not as able as he used to be.
This morning he informed me that he wasnt happy about having to queue for the bathroom and that it could be a bit awkward with these "other" people in the house as sometimes he might get up in the middle of the night and not have any clothes on. He "dried" all the dirty dishes and put them away in different cupboards and I have also had to retrieve endless items from the rubbish bin which he has thrown away. Ive given up on telling him that the pink dressing gown he insists on wearing is not his and that he should wear his thermal top underneath his clothes rather than the reverse. Oh dear, I am having a right good moan here, sorry.
Heres to the start of a new week and fingers crossed my mood will improve.
Love and hugs,
Margaret59 xx

Oh dear Margaret!

Although dad hasn't got up and started talking about people in the middle of the night yet I can identify with most of what you are saying. I haven't changed the colour of the socks yet because dad has gone back to wearing them with no problem. However
I have a new problem in that he says that his legs are killing him and he wants to see a private doctor. I have told him that the doctors are monitoring his blood pressure and that after a week without enalapril (this medication had to be allowed to run out because I had trouble getting a blister pack) he must allow the medication to kick in. Anyway when I explain all this to dad he relaxes only to go through it again! I am also trying to fit his appointments around my pupils which is difficult especially when I know what the doctor will say. Also he has to see the diabetic nurse next week where it will be discussed!

Hoping you have a better week

MaNaAk
 

Margaret59

Registered User
Apr 4, 2017
132
0
Yorkshire
Oh dear Margaret!

Although dad hasn't got up and started talking about people in the middle of the night yet I can identify with most of what you are saying. I haven't changed the colour of the socks yet because dad has gone back to wearing them with no problem. However
I have a new problem in that he says that his legs are killing him and he wants to see a private doctor. I have told him that the doctors are monitoring his blood pressure and that after a week without enalapril (this medication had to be allowed to run out because I had trouble getting a blister pack) he must allow the medication to kick in. Anyway when I explain all this to dad he relaxes only to go through it again! I am also trying to fit his appointments around my pupils which is difficult especially when I know what the doctor will say. Also he has to see the diabetic nurse next week where it will be discussed!

Hoping you have a better week

MaNaAk

Hi MaNaAk,
I thought I had sent you a reply earlier but can't locate it.
I hope you get the problem with your dad's legs sorted out soon.
I have just been so miserable this last week. OH is constantly following me about. We have lost the spoonrest from beside the kettle and one of my mother's ornaments got broken. I couldn't get annoyed about it although it meant a lot to me and he was upset about it but I just said I would glue it back together.
GP has doubled dosage of Citalopram, don't think it's made much of an impact yet though. Perhaps it will take a while.
The weather has been awful, very cold and windy so I haven't even been able to "escape" into the garden. Today OH has been very down, even more so since I had a call this morning from CPN asking if she could visit us tomorrow. He doesn't trust anyone and I have tried to assure him that it is only so she can see how he is doing.
This afternoon he didn't want to talk, go out for a walk, watch TV or listen to music. He said he just wanted to sit in peace and quiet.
He has been confused again tonight. Asked if I was here all night and did I know about his tablets.
It must be hard for you having to fit appointments around your other commitments. I have a lot to be thankful for really as I have retired.
Take care.
Love and hugs,
Margaret59 x
 

MaNaAk

Registered User
Jun 19, 2016
11,754
0
Essex
Hi MaNaAk,
I thought I had sent you a reply earlier but can't locate it.
I hope you get the problem with your dad's legs sorted out soon.
I have just been so miserable this last week. OH is constantly following me about. We have lost the spoonrest from beside the kettle and one of my mother's ornaments got broken. I couldn't get annoyed about it although it meant a lot to me and he was upset about it but I just said I would glue it back together.
GP has doubled dosage of Citalopram, don't think it's made much of an impact yet though. Perhaps it will take a while.
The weather has been awful, very cold and windy so I haven't even been able to "escape" into the garden. Today OH has been very down, even more so since I had a call this morning from CPN asking if she could visit us tomorrow. He doesn't trust anyone and I have tried to assure him that it is only so she can see how he is doing.
This afternoon he didn't want to talk, go out for a walk, watch TV or listen to music. He said he just wanted to sit in peace and quiet.
He has been confused again tonight. Asked if I was here all night and did I know about his tablets.
It must be hard for you having to fit appointments around your other commitments. I have a lot to be thankful for really as I have retired.
Take care.
Love and hugs,
Margaret59 x

Dear Margaret,

Dad's legs seem better today but I also try to be thankful for what I've got because at least I'm self-employed and so I have more freedom but I do feel for you as well. We carers need more patience than ordinary people and we are doing the best for our loved ones. There are some evil people in this world who couldn't care less about others.

Love

MaNaAk:):):):):):):):)
 

Margaret59

Registered User
Apr 4, 2017
132
0
Yorkshire
Dear Margaret,

Dad's legs seem better today but I also try to be thankful for what I've got because at least I'm self-employed and so I have more freedom but I do feel for you as well. We carers need more patience than ordinary people and we are doing the best for our loved ones. There are some evil people in this world who couldn't care less about others.

Love

MaNaAk:):):):):):):):)
Hi MaNaAk,
Glad to her that your Dads legs are better today. Your not wrong about needing more patience. Everyone always said I had the patience of a saint but oh boy has it been pushed to the limit lately, as I'm sure it has with us all.
It is really beyond my comprehension as to how some people just don't care. When my father started to need a bit more help due to his immobility my 2 daughters visited him during the day and the early evening albeit the fact that they also had homes to run and 7 young children between them. My brother assured me that he also called in to check on my father at night.Amazing really that on his so called evening visits he didn't notice my father at the foot of the stairs having fallen as he manoeuvred his way out of his stair lift. Fact is he hadn't even been up to see him the evening before so poor dad had been there all night. Unfortunately I was hundreds of miles away at the time and unable to be there to care for him. However after this incident I told my brother that I would be there 24/7 if need be. His reply was "well let's see if he (dad) lets you, let's see if you can manage, let's see if Dad lets you attend to his personal needs etc etc because I won't be doing it" No, unfortunately he wouldn't be doing it because he didn't want it to disrupt his life!!!
Well Dad and I got on just fine, he agreed to let me help him to wash and dress and even when he went into hospital prior to passing away he insisted that it was me who helped him with his toileting.
It's understandable that some people are unable to cope but there is no excuse for not caring is there.
Love and hugs,
Margaret x
 

MaNaAk

Registered User
Jun 19, 2016
11,754
0
Essex
Hi MaNaAk,
Glad to her that your Dads legs are better today. Your not wrong about needing more patience. Everyone always said I had the patience of a saint but oh boy has it been pushed to the limit lately, as I'm sure it has with us all.
It is really beyond my comprehension as to how some people just don't care. When my father started to need a bit more help due to his immobility my 2 daughters visited him during the day and the early evening albeit the fact that they also had homes to run and 7 young children between them. My brother assured me that he also called in to check on my father at night.Amazing really that on his so called evening visits he didn't notice my father at the foot of the stairs having fallen as he manoeuvred his way out of his stair lift. Fact is he hadn't even been up to see him the evening before so poor dad had been there all night. Unfortunately I was hundreds of miles away at the time and unable to be there to care for him. However after this incident I told my brother that I would be there 24/7 if need be. His reply was "well let's see if he (dad) lets you, let's see if you can manage, let's see if Dad lets you attend to his personal needs etc etc because I won't be doing it" No, unfortunately he wouldn't be doing it because he didn't want it to disrupt his life!!!
Well Dad and I got on just fine, he agreed to let me help him to wash and dress and even when he went into hospital prior to passing away he insisted that it was me who helped him with his toileting.
It's understandable that some people are unable to cope but there is no excuse for not caring is there.
Love and hugs,
Margaret x

Hi Margaret!

I asked the chemist that supplied dad's compression socks about dad's legs and his enalapril tablets and he said exactly what I thought he would say in that dad needs to give things a chance so dad is quite happy now. Anyway he sees the nurse next week and the hearing aid specialist on Thursday so lets hope everything goes to plan. One reason why I don't like seeing dad suffering with circulation problems is because my grandmother ended up having both legs amputated and I am wary that if dad does look after his diabetes this could happen. It's scary to think that your dad fell out of his stairlift and if I were your brother I would have been very very worried.

MaNaAk :):):):):):)
 

Belizzie

Registered User
Jan 29, 2016
17
0
Norfolk
I understand what you mean !!

I know what you mean. I love my hubby and would do anything for him but our life has changed and I feel isolated, sad, depressed at the thought of what the future holds. I have 2 lovely daughters but they have their lives to live i.e. children, work, their own problems that I don't talk to them about the situation but it would be nice to talk to someone who understands.

A friend of mine recently commented on how she was so sad that my OH's life had turned out the way it has.
Was I just feeling sorry for myself or what because I really wanted to say "what about me, what about my life?"
Is it that some people just don't understand that WE as carers have also Ustinov. had our lives turned upside down too???
I really had to bite my tongue and let the comment go over my head. I didn't want her to think I was been selfish by thinking about myself too.
Yes I love him and yes I would do anything for him but I also know that he will become more and more dependent on me and my life will never be the same again. However, I do not begrudge him one minute of my time.

Through Talking Point I am learning to understand so much more about the illness and your strength is giving me the strength that I need.
Love to all xx
ã
 
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