What am I letting myself in for?

[Squelchy]

Hi guys. Sorry for what is subsequently going to be a lengthy post, but I hope you can bear with me.

First off, I have no experience with dementia, apart from seeing my nan here and there when I was quite young.

Now, onto my situation. Some months ago I met an amazing young woman (26) and fell deeply, deeply in love with her like you wouldn't believe. I am about to turn 24, and before the events I will now relate to you occurred, we were both in no doubt whatsoever that we would happily be spending tghe rest of our lives together. To cut a long story short, she's been through a LOT of **** recently I've supported her through (unrelated to dementia mostly) and things were basically looking great for us when her grandad suddenly died, leaving her Alzheimers suffering nan alone.

Her reaction to this was to say to me please not to contact her because she's thought it over and she realises we can't be together because her life for the next few years is going to involve giving up work (which she has already done) so she can care for her nan full time (she's a senior nurse, and well qualified to do so).

Unfortunately I couldn't do this and I begged her and begged her, and right now she's busy sorting out her grandad's stuff as executor of his will and power of attourney or whatnot as well as looking after her nan (her family are totally disinterested and unsupportive), so obviously now is not the right time for us, but when things settle down in a few months and the dust settles, I want her to know that despite her being stuck in this situation, we can make her and I work.

And obviously that involves me being capable of dealing with and helping with her nan, otherwise it would be totally impossible.

So there is my situation. I love her and appreciate this is what her life is going to be like for the next few years, but right now with what limited knowledge of dementia I have, I'm willing to do it and support her and her nan. I can't let her go through this alone, and she would be if left to her family's devices.

Basically I need to gain a more complete and thorough understanding from the perspective of someone completely inexperienced in it what caring for someone with dementia will be like, and with that understanding her and I will be in a better position to talk practically about how our relationship will progress, and also convince her that she doesn't need to cut me out of her life for my own good.

A couple of points I think may be relevant:

- Her nan tends to get upset at times and can be 'lively' but isn't aggressive or frightened that often. She tends to do things like polish the flowers in the front garden or put things down the toilet "for safe keeping", and from what I have been told is fun to be around (well, as fun as it coould possibly be, obviously). Her nan, although over 80, is in pretty good physical shape so she does tend to move around a lot and we could be looking after her for many years to come.

- One of my girlfriend's concerns is that obviously since I don't know what dementia involves she'll introduce me to her nan and things will only be made worse. I want to reassure her I can deal with it, so one thing I am doing is going to be attending Alzheimers support groups to learn all I can about the disease.

- She's also concerned that in 10 years I will be resentful to HER because I've put my life on hold for her, and I'm having real trouble convincing her this won't be the case because being with her is what I want from my life, and I will deal with whatever circumstances that comes under.

There you have it guys! I can't bear to lose her and I will support her in whatever way she needs for as long as it takes, even if her family won't, but for her to be willing to let me do that, she needs to feel comfortable that things are going to be OK. So any input you guys could offer me on any aspect of the situation would be well appreciated.

Sorry it was long winded. Thanks for reading.

 

[Kate P]

Hi Squelchy (interesting name!) and welcome to TP.

Okay were to start.

Well, your girlfriends reaction seems to be quite extreme to be honest (that's just my opinion) although I can see what's she trying to say about not putting your life on hold as it is a life dominating illness for carers as well as sufferers. However, there are lots of people here on TP who care for parents and have spouses and children as well so it is managable and to be honest I would have been lost without my husband during this time.

However...

It's difficult to give a standard example of what caring for a dementia patient is like because each one is different. As far as we can see the personality and habits of the individual prior to getting dementia has a big impact.

I would think your best bet to get a good idea of it is to read the information sheets produced by the AZ society (I'm sure one of the moderators will point you in the right direction) and to just browse through the different threads here on TP.

It would also be a good idea to share these information sheets with your girlfriend - they may offer further information that she doesn't already have and it will also show that you are committed to helping and supporting her. Maybe you could also attend local AZ society meetings together?

Good luck.

 

[Grannie G]

Hello Squelchy.

First of all, I`d suggest you step back a bit and let your girlfriend get her house in order. You say she is still sorting out stuff from her Grandfather, and as well as that she has to adjust to caring for her Grandmother and getting used to not working. Big adjustments all round for her to make.

If I were you, I`d tell her you will back off for a while but you`ll always be there if she needs you. Whilst you are without her, just learn as much as you can about caring for someone with dementia. Read the posts on this Forum, read the fact sheets on the AS site.

If the love is so strong on both sides, you will come through it. I know it might hurt you, but it seems she needs some space just now. It`s understandable.

Take care xx

 

[Squelchy]

Hi Squelchy (interesting name!) and welcome to TP.

Hi Kate. Thanks for your reply. My surname is Welch, so yoou can imagine Squelchy has been a longstanding nickname of mine!

Well, your girlfriends reaction seems to be quite extreme to be honest (that's just my opinion) although I can see what's she trying to say about not putting your life on hold as it is a life dominating illness for carers as well as sufferers. However, there are lots of people here on TP who care for parents and have spouses and children as well so it is managable and to be honest I would have been lost without my husband during this time.

This is very much my opinion on the subject, but I fear she thinks she can handle this for years and years by herself and she wants to protect me by keeping me out of it. And I do understand her thought processes, but I feel if we're honest with each other about how we're feeling, then it's possible for me to help her and support her and for us to be together without the risk of my own life being subsumed. I don't want to sound selfish because I would do anything for her, but the fact is that just because she's tied to that house and her nan constantly, doesn't necessarily mean I would have to be, so we could spend more or less time together based on her nan's phases and how much we both have to deal with, practically and emotionally. It's very manageable, as you have said and as you know from experience.

It's difficult to give a standard example of what caring for a dementia patient is like because each one is different. As far as we can see the personality and habits of the individual prior to getting dementia has a big impact.

I would think your best bet to get a good idea of it is to read the information sheets produced by the AZ society (I'm sure one of the moderators will point you in the right direction) and to just browse through the different threads here on TP.

It would also be a good idea to share these information sheets with your girlfriend - they may offer further information that she doesn't already have and it will also show that you are committed to helping and supporting her. Maybe you could also attend local AZ society meetings together?

Good luck.

Thanks again Kate. As far as I can see, the only way to handle the situation is to actually handle the situation. I am fully going to attend some AZ meetings and read what I can on this board, and I also will hopefully find an opportunity to spend some time with dementia sufferers before she's able to introduce me to her nan, but really to meet and support her nan I need to meet and support her nan.

As for the information sheets, if anybody has any links to those then I would appreciate them, and I will certainly pass them on. I don't think her attending AZ meetings with me will be possible for the time being... we live a good 90 minutes drive apart, and while this would not be a problem if her weekends or evenings were free, where she's caring for her nan all the time, it's not really possible. More to the point, she isn't JUST caring for her nan at the moment, she's also handling her departed grandad's (RIP) legal affairs as well, so when she says she doesn't have a spare minute, right now that is the God's honest truth, so for now we're only in sporadic e-mail contact because I'm ashamed to say I started getting really very panicky and distraught when she tried to end it for my own sake (which proved her point for her really). So basically we're in minimal contact for now while she gets her affairs in order and gets used to her new order of life caring for her nan, and while I re-centre myself emotionally and basically prepare myself for what is to come, because that preparation is really the only way she'd be willing to let us be together, which is totally understandable.

I've e-mailed her the link to this thread anyway, so even if we're only in sporadic contact I am sure she will be reading it on a regular basis while sitting with her nan in the evenings (in between bouts of her nan getting up, of course).

I also think my commitment to supporting her has never been in doubt. She is fully aware of exactly how much I love her and what I would do and give up to be with her. Her worries seem to be that I don't understand what caring for an Alzheimer's patient requires, and that I won't be able to fit in with that. Obviously what I'm doing now is to try and assuage those fears and talk through all the possible angles.

For example, since starting to read up on it I appreciate that I will have to be introduced to her nan slowly, and that's OK. I also understand there will be periods when things will seem fine, and periods when things will be worse, but I feel those are bridges we should cross when we come to them. I love her totally and will support her unconditionally, and these are all things that we will get used to managing with time. One day she will feel happy to have looked after her nan, and we will be able to start a family together and live long and happy lives with each other.

One of the main functions of this thread is so she can read it and see everybody else's input on the situation and so she can have a 'log' of the way I am progressing in terms of coming to grip with the disease and the situation.

Thanks for the help Kate.

 

[Squelchy]

Hello Squelchy.

First of all, I`d suggest you step back a bit and let your girlfriend get her house in order. You say she is still sorting out stuff from her Grandfather, and as well as that she has to adjust to caring for her Grandmother and getting used to not working. Big adjustments all round for her to make.

If I were you, I`d tell her you will back off for a while but you`ll always be there if she needs you. Whilst you are without her, just learn as much as you can about caring for someone with dementia. Read the posts on this Forum, read the fact sheets on the AS site.

If the love is so strong on both sides, you will come through it. I know it might hurt you, but it seems she needs some space just now. It`s understandable.

Take care xx

Thanks Sylvia. That's exactly what we are doing actually. The combination of all the stuff we've been through in the last 4 months got on top of me and I just went a little mental the other day, but I've calmed down now and we're just down to e-mailing once a month and not texting or calling (although we still chatted on MSN and she text me once yesterday and I did e-mail her this morning, but they were with regards to things we had already agreed to let each other know about, mostly).

So you're right. She needs time to get her affairs in order. That's understandable and I'm happy to wait because I need the emotional space myself now. I've always been an extremely happy person, but the thought of losing her is the first time in my life I've ever experienced suicidal thoughts.

Hence the once a month thing. It's a good idea for both of us to have the space to deal with issues practical and emotional, and see how things change on a month to month basis, both with her situation with her nan and how easily we can arrange either a few hours just by ourselves with her family looking after her nan, or even to spend a few hours together with her nan (although obviously that will depend very much on her nan and also on how far I get with learning about the disease).

I graduate from uni in May and I have no ties at all, and I know I love her and want to spend the rest of my life with her. Obviously there are several options open then. I could move in with her and help with her nan on a more serious and full time basis if her and her nan were OK with it, or I could move nearby and see her and her nan occasionally, or I could travel to see her on a weekly basis and help her with her nan then. I don't mind what way we handle the situation as long as we are together and she is happy.

I think given the fact that she could be looking after her nan alone for years though, ultimately she wouldn't be able to cope with it without some sort of relief, and I am happy to help her deal with things when she has the time to slowly integrate me into her life and deal with things however she thinks is best.

 

[Kate P]

Well I hope you find the information you need here on TP.

On the downside from what you've just said I hadn't realised you were a long distance relationship - that within itself adds extra difficulties to any relationship but especially if her nan is at a stage where she cannot be left alone (which I assume she is if your girlfriend has finished work).

How would you spend time together? As your girlfriend rightly says it would be very difficult to introduce you into her nan's life at this stage.

You're both very young and if friendship is kept alive then love could follow again later. In the meantime just educate yourself and let your girlfriend set the pace as it were.

I hope all goes well for you.

 

[Squelchy]

On the downside from what you've just said I hadn't realised you were a long distance relationship - that within itself adds extra difficulties to any relationship but especially if her nan is at a stage where she cannot be left alone (which I assume she is if your girlfriend has finished work).

How would you spend time together? As your girlfriend rightly says it would be very difficult to introduce you into her nan's life at this stage.

You're right. This is a problem, but far from an insurmountable one. I'm prepared to do travelling and come up for days here and there, and it's only long distance right now. I have no ties to where I currently am when I finish uni and honestly I don't care where I live. I'd move anywhere to be with her.

But yes, this will be a practical issue to take into consideration. Obviously the worst case scenario is that her nan will never be OK with me, in which case we're doomed, but assuming the second worst case scenario occurs, i.e. that her nan is OK with me at least some of the time but she still needs to be watched like a hawk and nobody else will help, I think it would be a matter of basically looking after her nan together in the evenings, splitting up household responsibilities (obviously she's the only one who could handle the personal care aspect), basically both being aware of what her nan is doing before she puts her nan to bed and we can have some time alone. This would be a more 'in person' version of the way things have been lately anyway. We usually end up chatting on MSN while she supervises her nan, then when her nan goes to bed we chat on the phone for some hours. As and when her nan and I got comfortable and happy with each other, in practical terms there would be no reason we couldn't do the in person equivalent of this, i.e. her and I chat together while her nan watched TV, both keeping an eye on her, then when her nan goes to bed we could have some alone time. It would obviously just be a matter of slowly and safely introducing me to her nan and getting her comfortable with me, and patience with that is something I don't have a problem with.

I realise that will be difficult but it seems that a lot of people here have dealt with more difficult situations than this and managed to have a relationship where both partners are very happy.

As I've said, right now I will take her on whatever terms I can get, and as I become integrated more into her life and become more a 'part of the family' and her nan becomes more comfortable with me, obviously the more intimately I could become entwined in her life and the greater the depth of support I could offer, particularly if we were in closer geographical proximity.

I don't mind taking it as slowly as need be as long as the end goal is us being together. I think a lot of her worry was that I didn't understand how slow the process would be, but I'm definitely a lot more understanding of it now.

In many ways I think thhe long distance thing for now is a good thing. I graduate uni at the end of May, and obviously her nan will need to get used to me slowly, so if we could only see each other every few weeks and her nan would get used to meeting me that way, then it would probably be easier for all concerned. Like I've said guys, I'm in no hurry. I plan on spending forever with her, so very slowly easing me into her life and her nan's life when things have settled down, on her terms, is perfectly fine with me.

What's 6 months compared to 60 years?

You're both very young and if friendship is kept alive then love could follow again later. In the meantime just educate yourself and let your girlfriend set the pace as it were.

I hope all goes well for you.

Yeah, she is setting the pace. I know she loves me as much as I love her and doesn't want to lose me either, so really I just want to reassure her that we can slowly introduce me into her life in a safe, slow and controlled manner and get her nan gradually used to me so that I can be there to help as if I were her own blood.

 

[Squelchy]

I've also been reading quite a few of the threads here about the emotional impact caring for Alzheimers patients have on those that love them (particularly the "A life in the day of" threads)... some of it is incredibly moving and some of you guys are so brave. Dealing with someone who's plain difficult must be so much easier than dealing with someone who's being difficult who you love with all your heart. You have the practical issues to deal with, but not the deep seated emotional damage.

I can't let her deal with this by herself. It would destroy her. If she can deal with it from someone she loves all day every day without fail for the next several years, then I can deal with it quite easily to some extent or another when I don't have the emotional damage from it to deal with.

 

[DianeG]

Hi,
Welcome to TP. I hope we can all help you. I am 33 and my mum is 55 with Alzheimers. My mum and dad live together and I live with my husband and 3 yr old son. I guess as carers we feel that no one truly understands how we feel - the committment, the need to help and continued love for a person regardless of their condition. But also, the frustration felt by this illness and how it affects our loved ones and at times the anger and uncontrolable emotions.

Your girlfriend is very lucky (she will realise it soon) to have someone like you that remains committed unconditionally and with no promises. I hope that she realises that whilst she provides the care for her nan that she must have some form of life for herself too. She may be at the point where she feels guilty if not with her nan 24/7 but I hope she realises that there are bonuses for her nan too if you both have some form of relationship. Let me explain, caring is tiring both mentally and physically, sometimes conversation is hard when it is all so one sided and it can dry up. I can talk for britain about my work, little boy, blond moments etc but even I sometimes dry up. My husband is great at ensuring we take time either as a family, sometimes with mum and dad and for me and him on our own to get out and have some fun or just to chill with a DVD and nice wine. It's amazing how this time recharges you and makes it easier to cope with the next day/challenge ahead. I hope that you can both try and have some time together (even just as a wee test to see how it makes her feel and her nan respond afterwards) and I am sure it'll have a positive outcome.

Some threads you read on TP are about carers frustrated by family members not wanting to get involved and help and how we feel isolated or alone. It is refreshing to hear that you are so determined to help the lady you love.

Good luck to you and please keep us posted.

Diane

 

[Margarita]

Taking from my own experience from closing down emotional from a new EX old relationship, I was in when they told me my mother had AZ , We know each other since both 18 years old [ not my ex husband ]

I know where your girlfriend coming from saying you won't understand or handle it , also her not wanting a man in her life now . its her needs her choice .

for me it was also not only just sharing the emotion roller coster that I felt for my mother and my father had died that year. I did not want the added emotion roller coster of love for a man also to get to me when thing got deep with mum AZ and he could not handle it all me sharing most of my time with my mother then he may leave .


that was then , now 5 years on we still see each other now then 6 mouths can go past and I won't ring or anwer his calls , but his always they when I ring , but we are older and both had full time relationship so he respects my wishes and when the time come he wants us to be together full time , its just me ....

then as long as your realistic that she going to take her emotion stress in to the relationship with you . so its not only the understanding of AZ that is needed also her need to do this

from reading what you wrote it sounds like you have a good balance of understanding , but nothing going to prepare you for what your getting into, only time will tell just go with the flow with it with her

It would obviously just be a matter of slowly and safely introducing me to her nan and getting her comfortable with me, and patience with that is something I don't have a problem with.

I could become entwined in her life and the greater the depth of support I could offer, particularly if we were in closer geographical proximity.

Hopeful all she do is , but try it out with you and her Granmother under one roof giving it a go when she ready .... as she needs a life of her own even if it end up with geographical proximity with you for a long time , but your young may not want that as you may want children in the furture caring for someone even at the age of 80, can go on like a peace of string

 

[Squelchy]

Thanks for the comments guys.

Your girlfriend is very lucky (she will realise it soon) to have someone like you that remains committed unconditionally and with no promises. I hope that she realises that whilst she provides the care for her nan that she must have some form of life for herself too. She may be at the point where she feels guilty if not with her nan 24/7 but I hope she realises that there are bonuses for her nan too if you both have some form of relationship. Let me explain, caring is tiring both mentally and physically, sometimes conversation is hard when it is all so one sided and it can dry up. I can talk for britain about my work, little boy, blond moments etc but even I sometimes dry up. My husband is great at ensuring we take time either as a family, sometimes with mum and dad and for me and him on our own to get out and have some fun or just to chill with a DVD and nice wine. It's amazing how this time recharges you and makes it easier to cope with the next day/challenge ahead. I hope that you can both try and have some time together (even just as a wee test to see how it makes her feel and her nan respond afterwards) and I am sure it'll have a positive outcome.

Thanks Diane. I think she does realise she's lucky to have me support her like this, but I know she feels guilty at the idea of letting me, which is in part due to the fact that she thinks I couldn't handle it, and also because she knows that her situation will be different from yours, i.e. she WILL be the only full time carer for her nan for several years and she will be living with her the whole time. I don't mind handling things however she wants with regards to what sort of help I give her as long as we're together. But you're right, unless she has some sort of support, no matter how strong she is, eventually she will break under the pressure. We can both be happy if we handle it in a sensible and controlled way, which is really what I'm trying to sort out now by trying to understand the disease better and what dealing with it will involve, so we can discuss things from a more practical and informed prspective when things calm down a bit.

Hopeful all she do is , but try it out with you and her Granmother under one roof giving it a go when she ready .... as she needs a life of her own even if it end up with geographical proximity with you for a long time , but your young would not want that .

Thanks for the comments Margarita, but I'm not entirely sure what you mean here. If you mean because I'm young I wouldn't want to be living with her or near her then I'm afraid you're very much mistaken. On the contrary, I love her more than I have ever loved anyone or anything and I would give up everything to spend the rest of my life with her, and she knows that. Although it's a tragic condition and I don't mean to sound glib and make light of what you're all going through and I apologise in advance if I cause offence to anyone, I'm enjoying learning more about the disease and the challenges involved in coping with it because it only convinces me more that I am capable of dealing with it and that she will need help in coping with it (and though her needing help isn't a good thing, when she comes to terms with the fact that she will need help and I WANT to give it to her rather than feel obligated into doing so, that will be a good thing).

In short guys I appreciate everything you've posted and it's making me feel very positive about the whole situation. This isn't something I want to discuss with her right now because of how much she has on her plate, but it's good for me to be able to discuss it and I know she wants me to be free to talk about my feelings and what's bothering me. Learning more about this disease is in many ways upsetting but it does feel good to know more about it, and to become even more convinced in my own mind that this is something I would never have any sort of problem helping her with and allowing to enter my life if it meant being with her.

On a side note, there is something else I forgot to mention, and I haven't even mentioned it to her yet. I do have SOME experience of dealing with a similar situation. Some years ago I had a girlfriend who was a nurse (well, she worked in a care home and was qualifying) and although we weren't together for long, her mother was ill (physically ill rather than with Alzheimers) and was permanently bed ridden. Basically, most of the time we spent together was at her house with her constantly popping up to go and check on her mum, and I always preferred those evenings to the evenings we went out. Of course, the situation was very much easier and less complicated... I never really had to deal with her mum, and her dad was there some evenings to take over the responsibility so she could get out of the house here and there so obviously it's not exactly the same, but I do have some basis and experience of dealing with the situation of being in a relationship where my girlfriend is housebound due to an ill dependant most of the time. While we were together I enjoyed it a lot and never felt any stress whatsoever from the situation, although we weren't together long so I suppose it still had time to wear on me.

Anyway guys, thanks for the comments, and I really hope to hear some more input from you guys about the situation. As I said, I don't want to burden her with talking about my feelings on the matter, but I think reading this thread will help her because she'll know I'm talking things through, and more importantly that I'm getting a much clearer view on the situation and what us being together will involve.

I'm still trying to get through to the guy about the Alzheimers Support group, so I hope to attend one of those as soon as possible.

 

[jenniferpa]

Hi and welcome to TP

Maggie's made an important point here I think. It's not, I'm sorry to say, about your needs, it's about your GF's needs and what SHE wants to do. If this was a relationship site, my response might be different, but this is a site for carers and people with dementia, and those needs must be paramount. We can't speculate about what's going on in her head at the moment, all we know is that she's going to have a lot on her plate now, and for the forseeable future. Different people have different ways of coping with that, and while their way might not be my way, their way is equally valid.

I suppose it's all about respect - you have to respect a person's decsion, even if you think it's the wrong one (unless, of course, it's actually dangerous to them or others). Now that decision may have ramifications for others, or may be upsetting for them, but that's the nature of any relationship decision. Now you may feel that such withdrawal is both counterproductive and unhealthy and you may be correct, but one thing I'm reasonably certain of: when one person in a relationship withdraws, pushing by the other person is equally counterproductive. All the other person in that situation can reasonably do is try to wait it out. Be supportive yes, be open, but most importantly, be patient. This is just my own personal opinion, of course, but if I'm pushed to do something or make a decision, particularly when I'm not ready, it's just as likely that I will either avoid that decision by removing the person doing the pressing from the equation or the answer will be "no".

 

[Margarita]

I'm not entirely sure what you mean here. If you mean because I'm young I wouldn't want to be living with her or near her then I'm afraid you're very much mistaken. On the contrary,

No sorry that just what I mean you would want to be living with her ,because you want a furture with her . could you put up with living far away from each other, that what I meant .

could you put u with geographical proximity, still holding on to that love you have for her , till she ready .

 

[Squelchy]

Hi and welcome to TP

Maggie's made an important point here I think. It's not, I'm sorry to say, about your needs, it's about your GF's needs and what SHE wants to do. If this was a relationship site, my response might be different, but this is a site for carers and people with dementia, and those needs must be paramount. We can't speculate about what's going on in her head at the moment, all we know is that she's going to have a lot on her plate now, and for the forseeable future. Different people have different ways of coping with that, and while their way might not be my way, their way is equally valid.

I suppose it's all about respect - you have to respect a person's decsion, even if you think it's the wrong one (unless, of course, it's actually dangerous to them or others). Now that decision may have ramifications for others, or may be upsetting for them, but that's the nature of any relationship decision. Now you may feel that such withdrawal is both counterproductive and unhealthy and you may be correct, but one thing I'm reasonably certain of: when one person in a relationship withdraws, pushing by the other person is equally counterproductive. All the other person in that situation can reasonably do is try to wait it out. Be supportive yes, be open, but most importantly, be patient. This is just my own personal opinion, of course, but if I'm pushed to do something or make a decision, particularly when I'm not ready, it's just as likely that I will either avoid that decision by removing the person doing the pressing from the equation or the answer will be "no".

Jennifer, this is very much her attitude too, and I agree. If she had listened to absolutely everything I had said, given me a chance to learn about dementia, given everything that's happened time to settle down, and had basically considered absolutely everything I had to say about how we could make it work and she still made the decision it couldn't, I guess I would have no choice but to accept that. I couldn't make her the sort of promises she wants me to make her about what I would and would not do as a result of that decision, but I would have no choice to accept it.

She is prone to making emotional decisions though, often for what she considers to be my own good, but I'm pretty sure now I've calmed down and am giving her the space she wants and that I'm learning about dementia and really considering what anything occurring between us will involve, that she will realise that in time things can be very happy for both of us and that I could quite easily fit into her life and be a help and support for her with her nan. Plus she can see since I'm calmer and not unhappy right now knowing things could work out in the future that my feelings are one more thing she doesn't have to worry about (and she was worried about them). That's one reason for this thread... I want her to read it so instead of me trying to convince her of this, she can read experiences from other carers about how they've experienced support and happy relationships which have helped both of them through tough times, and when things are calmer and she's not under so much pressure to do everything for everybody, she can consider things then. In other words I think it's largely irrelevant now since she can see I'm OK and we can just put things on hold indefinitely until they've calmed down. That's really all I want for now. Us being in contact once a month so we know where we stand is fine by me. She text me last night and I THINK it was to reassure me that things were going to be fine, but my sleeping pill had really kicked in big time and I don't remember in the slightest, and I deleted it.

In the meanwhile, of course, I will be learning everything I can about dementia in order to be better prepared for things, and just keeping in touch sporadically.

Her nan's needs are of the primary importance, obviously, but I see a future where her, I and her nan can all be very much happier than we otherwise could have been. Hence why we're just keeping in contact right now instead of moving forwards so that she can make a decision in the future when we're both more ready for it to be made. I'm not going to push her to take things forward right now, but rather just make sure we stay in touch in the background so that in the future when things are easier for both of us we can make a go of it.

No sorry that just what I mean you would want to be living with her ,because you want a furture with her . could you put up with living far away from each other, that what I meant .

could you put u with geographical proximity, still holding on to that love you have for her , till she ready .

If we were part of each other's lives, then yes, I could put up with lack of geographical proximity, though I'm not entirely sure that would necessarily be an issue given my lack of ties to anywhere in particular once I graduate.

I think this is getting a little off topic though guys. I think she and I will be OK in terms of handling how we deal with our future together, I'm mainly looking for advice on things I could do to help me learn more about Alzheimers, experiences from people in similar situations (spouses of carers), advice for how to handle first introductions, that sort of thing.

 

[jenniferpa]

Jennifer, this is very much her attitude too, and I agree. If she had listened to absolutely everything I had said, given me a chance to learn about dementia, given everything that's happened time to settle down, and had basically considered absolutely everything I had to say about how we could make it work and she still made the decision it couldn't, I guess I would have no choice but to accept that. I couldn't make her the sort of promises she wants me to make her about what I would and would not do as a result of that decision, but I would have no choice to accept it.

She is prone to making emotional decisions though, often for what she considers to be my own good, but I'm pretty sure now I've calmed down and am giving her the space she wants and that I'm learning about dementia and really considering what anything occurring between us will involve, that she will realise that in time things can be very happy for both of us and that I could quite easily fit into her life and be a help and support for her with her nan. Plus she can see since I'm calmer and not unhappy right now knowing things could work out in the future that my feelings are one more thing she doesn't have to worry about (and she was wprried about them). That's one reason for this thread... I want her to read it so instead of me trying to convince her of this, she can read experiences from other carers about how they've experienced support and happy relationships which have helped both of them through tough times, and when things are calmer and she's not under so much pressure to do everything for everybody, she can consider things then.

.

Aye, but there's the rub. You may well hear stories of carers that have gained support for their role from other loved ones, but you can equally well find stories of relationships and marriages that have broken in the process. Furthermore, a relationship takes work but so does caring for someone - you may be in the process of discovering the reality of "bad timing". As in, in other circumstances, at another time, this relationship could grow, but she may not have the energy to deal with it at this time. Now maybe you're comfortable with that and are prepared to do all the support and she's comfortable with letting you and that's fair enough - it's all down to personalities. Frankly, that sort of imbalance would not work for me, but that may say more about my character flaws than anything else. And, of course, there is a difference between gaining strength from a long established relationship, and trying to start a relationship in less than ideal circumstances. Don't get me wrong - if your girlfriend was here asking these sort of questions I would saying, yes, she has an absolute right to personal fullfillment, even if that wasn't compatible with 24/7 caring. But it's not. And I'm not going to second guess a third-parties motivations.

Best wishes

 

[Squelchy]

Aye, but there's the rub. You may well hear stories of carers that have gained support for their role from other loved ones, but you can equally well find stories of relationships and marriages that have broken in the process. Furthermore, a relationship takes work but so does caring for someone - you may be in the process of discovering the reality of "bad timing". As in, in other circumstances, at another time, this relationship could grow, but she may not have the energy to deal with it at this time. Now maybe you're comfortable with that and are prepared to do all the support and she's comfortable with letting you and that's fair enough - it's all down to personalities. Frankly, that sort of imbalance would not work for me, but that may say more about my character flaws than anything else. And, of course, there is a difference between gaining strength from a long established relationship, and trying to start a relationship in less than ideal circumstances. Don't get me wrong - if your girlfriend was here asking these sort of questions I would saying, yes, she has an absolute right to personal fullfillment, even if that wasn't compatible with 24/7 caring. But it's not. And I'm not going to second guess a third-parties motivations.

Best wishes

That's very true Jennifer. I know she's reading this thread as we speak and will no doubt give a lot of weight to your words, and rightly so.

The thing is I would never want to be a burden to her, but rather a help. It's down to her, ultimately, and short of kidnapping her and handcuffing her to a radiator in my basement there's ****** all I can do to make her be with me, but what I CAN do is fight with the last breath in my body to help her see I can be a help and a light in a dark time, rather than something else she has to deal with.

She has reassured me things are going to be fine and I really think it's helped an incredible amount that she has seen I am willing to handle things exactly on her terms in her time, and also that I'm elucidating myself on the disease itself.

At the moment she's not really ready to talk about anything even in a speculative capacity so right not how to handle things is really not an issue I need to discuss. Probably won't be until well into next year at the earliest, so it would be cool to get some Alzheimers-oriented rather than relationship-oriented tips, if possible.

Thanks guys.

 

[DianeG]

Hi again,

We are all offering advicde the best we can. Some I know you will ditch but we can only say what we have experienced - the good and bad.

You may want to try finding out about the extra services the Social Services and Joint Dementia Initiative offer in her area i.e. extra support to enable her to take a few hours off and even some little clubs or aids that make make life with her nan more enjoyable.

Not sure if Joint Dementia Initiative is unique to our area or not but 1st port of call would be social services and they could offer some additional advice.

If there are options there then there may be opportunity for your girlfriend to take some time out for herself - and that is not selfish at all.

Take care all of you.

Diane

 

[Squelchy]

Hi again,

We are all offering advicde the best we can. Some I know you will ditch but we can only say what we have experienced - the good and bad.

You may want to try finding out about the extra services the Social Services and Joint Dementia Initiative offer in her area i.e. extra support to enable her to take a few hours off and even some little clubs or aids that make make life with her nan more enjoyable.

Not sure if Joint Dementia Initiative is unique to our area or not but 1st port of call would be social services and they could offer some additional advice.

If there are options there then there may be opportunity for your girlfriend to take some time out for herself - and that is not selfish at all.

Take care all of you.

Diane

Thanks Diane. All advice is appreciated, honestly. I didn't mean to come off as narky, I just know she is reading this thread and I would sooner avoid either of us getting upset about things that may not be an issue for some time to come and focus instead on doing what I can to educate myself on Alzheimers and prepare myself for any situation which may arise. Even though we arranged to speak once a month we've been chatting briefly on MSN daily which I think is good for both of us so we don't have to deal with missing each other, but it also would be a pretty poor idea to chat in any more depth than that. I know she's very close to the edge right now and can't handle one more thing and doesn't want me to be there in any capacity other than light relief, which is I guess why she's talking to me. I'm happy to just talk in that capacity, since to be honest I think I need a break from talking of more stressful matters too. Plus the last thing I want to do is risk heaping any more stress on her, because I know what to me seems a reasonably light conversation can to her be another straw on the camel's back. So really I would sooner avoid any relationship or what's-going-to-happen based discussion for quite some months, for both our sakes.

I'm sure she will appreciate the JDI suggestion (she may even know of something similar already). I know right now she understandably isn't willing to leave her nan's side so that isn't really an option, but possibly longer term it's something to consider as a possibility if she wants to. It's good to have the option to consider, at any rate.

 

[DianeG]

You are doing great and it sounds like she is doing a sterling job with her nan.

I hope she considers at least finding out about support out there. It may be good for her nan to slowly mix with other people in a similar position. We are about to try with my mum - easy does it though.



No idea if it is the right or wrong thing. Every situation is different.

 

[jenniferpa]

At the moment she's not really ready to talk about anything even in a speculative capacity so right not how to handle things is really not an issue I need to discuss. Probably won't be until well into next year at the earliest, so it would be cool to get some Alzheimers-oriented rather than relationship-oriented tips, if possible.

Thanks guys.

That's going to be difficult because there's a tag that one of our members has in her signature line - "If you've seen one person with Alzheimer's, you've seen one person with Alzheimers". There is no way to know if any given person will display any given behaviour - all we would be doing is playing the statistics game. It's a degenerative brain condition, so memory loss is a given, but anything else is just guessing. Also, you need to bear in mind that many elderly people have other health issues that may affect their prognosis and behaviour. I suppose the one thing I would say to anyone who hadn't been exposed to this disease before is: this isn't, generally, a gentle slide into happy befuddlement. There are very few accurate portrayals of this disease in the media. The memory loss aspect may be one of the easiest aspects to deal with (not easy, but easier), because there can be some very, repeat, very challenging behaviours that go along with it. They don't happen to everyone and they don't happen in a specific order so it's darn near impossible to plan for them. All I can say is that's there's a good chance if something comes up, and you post in this forum, there will be more than person who'll say "yes that happened to us". In fact, I'd be willing to rate that as 100% certain.