Hello everyone,
For the past six months or so I've found it incredibly frustrating and disappointing to find how hard it is to get a diagnosis or even any useful tests done for my great aunt who lacks insight into how bad her memory and cognitive abilities are. This has actually been one of the most distressing aspects of the situation for me as it makes me feel like I'm the crazy one or else the system is rigged to prevent people getting diagnosed for some reason. Speaking to others and reading similar posts on this forum I could see I was not alone, but that was little comfort really.
I bottomed out in terms of despairing over this a couple of months ago and realised yesterday while speaking to another carer that I had actually pretty much come to terms with this, and accepted that this was an area I should spend no more energy on as I can't do everything and really need to focus my efforts on problems that I can resolve. Begging, nagging and haranguing various health care professionals had got me nowhere and just left me exhausted and upset, but to my surprise I was eventually able to let that disappointment go.
However, I took the opportunity to give my GA's GP surgery another nudge two weeks ago. I had to chase up some medication the hospital had recommended for her heart over a month ago, which seemed to have got stuck in the system somewhere as she didn't seem to have ever got the prescription or the tablets. The lady that was on reception asked me to email them the letter from the hospital that I was referring to as she didn't think they had a copy. Once I had the email address, I emailed a copy of the letter across as requested, and as I had discovered the doctor was due to ring my GA for a phone consultation in a few days time, I took the opportunity to also reiterate my concerns in that email about her memory. I listed lots of examples of things she struggles with, and asked once again if he would consider broaching the topic with her during that call. I warned him that she would likely deny having much of an issue and try to hide it, and offered to do anything I could to help.
I didn't hear anything back, not even acknowledgement of my email and as two weeks had passed I assumed that again that had been a waste of time. However, I got an email this morning from the surgery thanking me for my email and asking me to call so that I could book an appointment in for my GA at a time I could accompany her so that they could do a memory assessment and a brain examination. The will also be sending a district nurse out to take some blood samples to test the week before, so that the results of these will be available for us at the time of the appointment.
I have called up and made the appointment (23rd July), and agreed that when I tell my GA about this I will tell her it is just a routine check up for over 85s. If I tell her the truth she will be angry with me, get very upset and worried and most likely refuse to go, so I felt this was the kindest way forward for all of us.
The thing is, that rather than feeling relieved or pleased I'm now really anxious about this appointment and whatever will follow, and my brain has gone into overdrive imagining all the possible disaster scenarios. It was so traumatic speaking to so many people while she was in hospital (doctors, nurses OTs etc.) who would either 1) not take me seriously or 2) tell me they understood my concerns but couldn't help, or 3) promised to do things and then never followed through. Previous attempts to contact her GP got me nowhere and of course any conversations with my GA to encourage her to ask her GP for advice are equally unsuccessful. I'm frightened of going through the same things again, and this time with my GA present meaning it could be even more distressing and I'll have to get her home again afterwards on my own too, while she's potentially cross and frightened and taking it all out on me.
I don't have any family members or anyone else to assist or support me through this, so it's very hard and I often feel overwhelmed, frightened and exhausted by it all. I know on some level that this could be a step forward because although the tests might not show anything and we are no further forward, it could be that if she were to get a diagnosis this would provide me with a bit more leverage in terms of getting support for her. But I'm just feeling scared and anxious because very few things seem to go well, and I feel the odds are that this will be a disaster too. Just one more distressing experience that leaves me an emotional wreck.
I'd be ever so grateful for any advice or tips or even just comments that would help me to put things into perspective and feel a bit more positive and less of a sense of trepidation about this latest development.
Also if anyone could fill me in on what these tests are likely to involve (blood tests, brain examination and memory assessment) I would appreciate it, as I've no idea whether these are likely to be helpful or not. So far the only tests she's had have done nothing but wind her up and I'd like to be braced for that if that is likely to be the case again.
Thank you for reading!
For the past six months or so I've found it incredibly frustrating and disappointing to find how hard it is to get a diagnosis or even any useful tests done for my great aunt who lacks insight into how bad her memory and cognitive abilities are. This has actually been one of the most distressing aspects of the situation for me as it makes me feel like I'm the crazy one or else the system is rigged to prevent people getting diagnosed for some reason. Speaking to others and reading similar posts on this forum I could see I was not alone, but that was little comfort really.
I bottomed out in terms of despairing over this a couple of months ago and realised yesterday while speaking to another carer that I had actually pretty much come to terms with this, and accepted that this was an area I should spend no more energy on as I can't do everything and really need to focus my efforts on problems that I can resolve. Begging, nagging and haranguing various health care professionals had got me nowhere and just left me exhausted and upset, but to my surprise I was eventually able to let that disappointment go.
However, I took the opportunity to give my GA's GP surgery another nudge two weeks ago. I had to chase up some medication the hospital had recommended for her heart over a month ago, which seemed to have got stuck in the system somewhere as she didn't seem to have ever got the prescription or the tablets. The lady that was on reception asked me to email them the letter from the hospital that I was referring to as she didn't think they had a copy. Once I had the email address, I emailed a copy of the letter across as requested, and as I had discovered the doctor was due to ring my GA for a phone consultation in a few days time, I took the opportunity to also reiterate my concerns in that email about her memory. I listed lots of examples of things she struggles with, and asked once again if he would consider broaching the topic with her during that call. I warned him that she would likely deny having much of an issue and try to hide it, and offered to do anything I could to help.
I didn't hear anything back, not even acknowledgement of my email and as two weeks had passed I assumed that again that had been a waste of time. However, I got an email this morning from the surgery thanking me for my email and asking me to call so that I could book an appointment in for my GA at a time I could accompany her so that they could do a memory assessment and a brain examination. The will also be sending a district nurse out to take some blood samples to test the week before, so that the results of these will be available for us at the time of the appointment.
I have called up and made the appointment (23rd July), and agreed that when I tell my GA about this I will tell her it is just a routine check up for over 85s. If I tell her the truth she will be angry with me, get very upset and worried and most likely refuse to go, so I felt this was the kindest way forward for all of us.
The thing is, that rather than feeling relieved or pleased I'm now really anxious about this appointment and whatever will follow, and my brain has gone into overdrive imagining all the possible disaster scenarios. It was so traumatic speaking to so many people while she was in hospital (doctors, nurses OTs etc.) who would either 1) not take me seriously or 2) tell me they understood my concerns but couldn't help, or 3) promised to do things and then never followed through. Previous attempts to contact her GP got me nowhere and of course any conversations with my GA to encourage her to ask her GP for advice are equally unsuccessful. I'm frightened of going through the same things again, and this time with my GA present meaning it could be even more distressing and I'll have to get her home again afterwards on my own too, while she's potentially cross and frightened and taking it all out on me.
I don't have any family members or anyone else to assist or support me through this, so it's very hard and I often feel overwhelmed, frightened and exhausted by it all. I know on some level that this could be a step forward because although the tests might not show anything and we are no further forward, it could be that if she were to get a diagnosis this would provide me with a bit more leverage in terms of getting support for her. But I'm just feeling scared and anxious because very few things seem to go well, and I feel the odds are that this will be a disaster too. Just one more distressing experience that leaves me an emotional wreck.
I'd be ever so grateful for any advice or tips or even just comments that would help me to put things into perspective and feel a bit more positive and less of a sense of trepidation about this latest development.
Also if anyone could fill me in on what these tests are likely to involve (blood tests, brain examination and memory assessment) I would appreciate it, as I've no idea whether these are likely to be helpful or not. So far the only tests she's had have done nothing but wind her up and I'd like to be braced for that if that is likely to be the case again.
Thank you for reading!