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New and struggling

Tillymouse

Registered User
Aug 6, 2013
2
0
Hi everyone,

I've been reading a lot from these boards and am really touched by how much support you give each other. I just wanted to say hello and tell you a bit about my situation which seems to have become suddenly very stressful.

I'm 38 and full time carer to my grandma who is 96 and lives with us. We don't yet have a formal diagnosis of AD but her CPN feels this is the most likely problem. He said he didn't think it was worth doing a formal assessment due to her age and frailty. I don't know if this is common or good practice or if we are disadvantaged by this. Grandma was living alone about 100 miles away from me until about 6 months ago. She has always been very independent and refused any intervention but following a stroke, she could no longer manage and came to live with me.

She has recovered well from the stroke but mentally I feel she is declining. The main issues at present are anxiety about being left alone, obsessive attempts to recall words and attachment to a white board where we write the forgotten words, anxiety about the whereabouts of all members of the family, tearfulness, throwing/smearing food and saying things that aren't true to visitors (for example, that I had left her alone for 10 hours without a drink).

Physically she is similar to before her stroke. She can walk with a Zimmer frame with assistance, can feed herself, etc. She needs help to get in and out of bed, transfers to toilet, needs food cutting up, thickened fluids. She is now incontinent which is new.

We have recently been assessed by Social Services and now have a morning call for washing and dressing in the week and a sitting service for 3 hours once a week. She goes to a day centre for 4 hours once a week, although she is generally reluctant.

We are trying to arrange some respite care but she is so far refusing to go anywhere. I had one weekend away when we had 24 hour carers but it cost me £600 to go.

I am feeling very close to snapping. I have 3 children (9,7,3) and am separated from their father, with whom I have a generally difficult relationship. I have a partner but he is very resentful of the burden placed on us by grandma. He tries to argue with her when she says things that aren't true and gets more and more angry when she won't accept what he says. I feel stuck in the middle of them. I often feel like I want to run away. I was meant to be returning to work as my youngest child starts school in September but I can't now that I have grandma. I have no family support really; I have no siblings and my parents are divorced and this is my dad's mum. He lives 100 miles away and I think is just glad to have her off his hands. We are also trying to move house to somewhere more suitable for grandma, which in itself is pretty stressful.

I don't know if anyone can help but it's helpful just to write it all down.

Thanks for reading.
 

Noorza

Registered User
Jun 8, 2012
6,542
0
I am so sorry you are in this situation. I can see the strain it is putting on you and your family and the care package is so very meagre. My only thought is that has the time now come for Grandma to go into a care home?

The strain this disease puts on the whole family is immense.
 

Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
Welcome Tillymouse - I am glad you have found this place and I hope it continues to give you some good things.

But of course you do have your hands full and I can see you are looking for ways forward.

My first thought is that you should return to work just as you planned. That is usually the advice I have seen - especially given your age - it is important that we keep our own lives going in order to better care for others.

Can you begin to look at alternative care arrangements? Social services will not help you if they think you are helping her and you are prepared to continue doing so. From what you say, your grandma's needs are increasing. It is best to have plans in place in advance if at all possible.

I wish you all the luck in the world and keep posting.
 

turbo

Registered User
Aug 1, 2007
3,852
0
Hello Tillymouse, Welcome to Talking Point.
What a lot you have to cope with especially with a young family. It's sad that your dad is unwilling to help especially as it's his mum and you have your gran living with you.
It does sound as if you need more support. Does your gran get Attendance Allowance and do you get Carer's Allowance. Also if this hasn't been done you will need to think about a Lasting Power of Attorney if your gran still has capacity.
Please keep posting.

turbo
 
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Grannie G

Volunteer Moderator
Apr 3, 2006
76,041
0
Kent
Oh dear! What a lot you have on your plate Tillymouse.

It doesn`t help to be on the receiving end of additional stress from an unhappy partner but understanding dementia and being able to ignore challenging behaviour is a tall order.

Perhaps Social Services can advise you how to approach respite care for your grandma. I wouldn`t discuss it with her or ask her opinion. It sounds disrespectful, but you are in desperate need of a break and really she has no choice, if you don`t want your own health to suffer.

We had a CPN [Community Psychiatric Nurse] who offered to take my husband into respite care if he refused to go. As it happened it was not necessary. I told him the doctor suggested he go into a convalescent home to build up his strength and he agreed. It was an untruth but a means to an end for both of us.

Perhaps you could arrange respite care with Social Services and ask for you and your grandma to be accompanied to the home, perhaps by one of her carers.
 

wobbly

Registered User
Feb 14, 2012
313
0
Mid Wales
Hiya, and welcome, it's so hard for us to see the wood for the trees isn't it, we all want to do our best and its easy to lose sight of what we need. You have to put your own well being first at some point, your family and partner too. My mum was my dads main carer and got to a point where she was making herself ill trying to cope and Dad had to go into a care home, me and Mum felt so bad but knew in our hearts it was the best decision, I needed my Mum to be well so felt so torn....my heart goes out to you.....
 

60's child

Registered User
Apr 23, 2013
588
0
suffolk
Hi Tillymouse
I am sorry that you have so much to deal with. It may sound harsh but it might be time to have a hard think about whether you can continue caring for your gran long term. Your children are very young and it sounds like your relationship with your partner is under strain as well. You clearly love your Gran but are being pulled in all directions. Poor you :( It does seem a little unfair that you are the one dealing with everything but sadly not uncommon. Please get as much help as you can so you can have a break and if it really is getting too much a care home might be the only option.
I am caring for my Mum but have no young children to consider and my Husband is very accepting of the situation. It is not easy but I cant imagine how I would manage if I had such young children as well.
Please think of yourself as well. I do appreciate it is hard but if you get to the point that you get carer burn out this will not help you or your Gran.

Ps Welcome to the forum. It is a very supportive place.
 
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lilysmybabypup

Registered User
May 21, 2012
1,263
0
Sydney, Australia
Tillymouse, what are caring granddaughter you are, and it seems quite unfair for you to be coping with so much alone. I really don't know how you can continue such a gruelling pace.

I completely understand that you want to do the best for your grandmother, but I don't see how you can manage with 3 young children and a partner. If you're unable to contemplate full time care, you really need to get as much help as is available, and arrange respite. I honestly know how hard that feels, I've been in the same place, but you can't possibly continue without a break.

Perhaps a formal diagnosis will enable you to access more services and get your gran into some respite for a week or two. Please look after yourself.

Stephanie, xxx
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
Hi Tillymouse, just wanted to add my welcome to the others' and to say that I also feel that you definitely need respite at least, even if your gran is reluctant. You need it for your own wellbeing.

I too would like to say that you should go back to work if you would like to. I know that's easy for us to say and would involve quite major changes to be made to your life and care responsibilities, but I think it would be worth it.

I do hope you get something sorted that is acceptable to you all. Keep posting and let us know how you get on.
 

Tillymouse

Registered User
Aug 6, 2013
2
0
Thank you everyone for your thoughtful and sympathetic replies. I've been trying to post this since yesterday but it's taken me this long to work out how to do it!! It's great to know there are others who understand what it's like as it's sometimes very difficult for outsiders to grasp how demanding it can be, beyond the physical needs of the person with AD.

We've had some success in that social services have agreed to partially fund a week of respite at home. I will have to pay for night sitters but SS will fund calls and sitters throughout the day. Tonight I have been looking at holidays! I think once we've made the break into having respite once it will be easier next time.

Thanks for your comments regarding returning to work. I am a nurse but have been on a career break whilst having my children so I need to do a return to practice course. At the moment I'm trying to decide if I can actually cope with the course. I need to travel about 50 miles to do the theory component which will have implications for child and grandma care, and then I will have to do shifts. Not sure how or if this will be achievable. It needs a lot of thought. I worry that if I have a bad run of nights with grandma again then I won't be safe to be at work the next day. It is so easy to make mistakes when you're tired.

Thanks again for all your kind words :)
 

Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
I am glad you are thinking it all through ..... if I can add to the components of your decisions: I know it is easy for a nurse to fall behind on the return to work refreshment regulations: my cousin has struggled and failed. My neighbour has struggled and succeeded.