Confused and unhappy

[katy66]

I have been a member of this forum for sometime now and often read the posts that you all do. I find some of them very helpful and others very sad. Overall though I think it's good to know that we are all in a very similar situation and have ups and lows.
My Mother has vascular dementia following on from a stroke in 2011. She used to be my best friend and now she is a virtual stranger.

2 years ago my partner and I decided to take the big step of selling our house and Mum's and buying somewhere where we could create a self-contained annexe for Mum so that she could carry on with independent living but we would be on hand to help.
This was really because I could not cope anymore with going backwards and forwards to her house from ours. It was only 20 minutes away but I would sometimes do it 2 or 3 times a day. She would phone up to 7 times a day (and night) very upset about silly things and I couldn't leave her to muddle through.
Unfortunately the first house we were buying fell through and we all ended up in rented accommodation for 6 months, this didn't help as it confused Mum horribly and she has never really settled since. We have now been in our new house for 18 months.
The support in our local area is very good and Mum and I both attend a support group twice a month and Mum goes to day centre clubs three times a week. In between I keep her occupied with drawing, puzzles and short walks around the garden.

All sounds pretty good? My problem is my family.

I have a sister and a brother. My sister lives abroad but does seem to understand what is happening with Mum and she phones for long chats with her and sends letters photos and drawings from her family. I work with Mum on a "family tree" so we can work out who is who!!

My brother, who I used to get on really well with has turned into a different person than the one I grew up with. He is in complete denial about the VD and thinks I am making a lot of fuss about nothing. He has accused me more than once of ripping Mum off and only doing the house move so I could gain.

I have tried talking and writing to him but no joy.

I have also recently dealt with the death of an Aunt, not just as next of kin but also as executor even though she had nominated both my brother and me. He was unable to help with any of it as he has other commitments. I have had no support or help with any of that either.

I had to arrange for Mum to go into respite whilst I was in another part of the country dealing with my Aunts house clearance and sale, as it wasn't convenient for her to go to my brothers.
The thing is it is never convenient and he also made it quite clear a while ago that he would never have her to stay if it was to my benefit! He actually came to visit her yesterday with his wife, the first time in the 18 months we have been here. I was told via email that they were coming and I had to change appointments etc but was happy to do that as I thought it would be nice to see them and to see if they were pleased with the set up we have here.

How wrong I was. They ignored me completely for the whole 4 hours they were here. They did spend the time with Mum in her annexe. I had left cakes and biscuits for them all to share but they were left untouched. I have no idea what they were talking about as Mum cannot even remember who was here let alone what they said.

I know I am not perfect and I know I make mistakes with Mums care but I really do try very hard to make it good.
I am exhausted.
I work from home on the days that Mum goes to her clubs as well as still trying to unpack and sort out our part of the house. We concentrated on making the annexe perfect so ours just got left. I do all the cleaning, cooking, shopping, laundry (a lot as she is incontinent) and dog walking. My partner works really long hours as he is the only bread winner now. I used to show an interest in what he does and even used to work with him but now I cannot be bothered.

We have not had a days break since we moved from our beautiful house 2 years ago.

When we moved I had this wonderful idea that my brother and his family would spend time with Mum as we are now nearer to where they live and perhaps even take her out for lunch or museum visits etc..

What an idiot I am.

 

[Quilty]

Im sorry your brother is not helping. It is what happens in most families im afraid. If you go to youtube and type in Teepah Snow you will find some great dementia training videos that are well worth watching. Teeoah says for every 5 families dealing with dementia only 1 will pull together. My family also fell apart and i was left as sole carer despite having 2 sisters. Anger and resentment is a destructive emotion. I care for mum because i decided to. My lufe, my choice and my karma. I cant waste time thinking about the others.
Have you looked at sitters, befrienders or day care for your mum? It would do you both good. Lots of love and a big hug to you. Quilty

 

[Buckslass]

No you are not an idiot. With my limited experience to this illness unless you are caring for someone 24/7 you can not appreciate the emotional stress and physical exhaustion that it takes to keep going. Visitors only see a person who whilst occupied appears to be fairly content.

You are having to constantly having to adjust your priorities and this is tough.

If it helps it sounds that you are doing a great job at balancing everyone needs.

Take care

 

[lin1]

Hello Katy. I am glad you dipped your toe in the water and made your first post.
Families eh ...... You are obviously doing your level best for your Mother ,it's such a shame your brother cannot see that and is unwilling to help.
Please try not to let your brother get you down, I don't normall like to speak badly about other peoples family members , however it seems to me his values are a lot lower than yours and he is the loser in this, yes you are tired and worn out (((((((hug)))))) but he is losing out on some good times with Mother.
Hold your head up high.

 

[Shedrech]

Hello katy66
I'm so glad you found TP - it's a safe and supportive place to get off your chest anything that worries you - and as you've already discovered, lovely people respond thoughtfully to what you write
Sadly Quilty's response is spot on - dementia seems to have an awful capacity for causing ructions, finding fissures in relationships that we had no idea existed
You know in your own mind that you are doing all you can for your mum, and all with a warm heart
Maybe it is time to ask for a re assessment of your mum's needs - and have you had a carer's assessment? I hope you are claiming Attendance Allowance - and Carer's Allowance if you are eligible. Do please consider some care at home maybe even day care, and a cleaner for your mum - there's only so much you can do yourself - you deserve a break
best wishes

 

[canary]

Hello Katy, Im glad you have found things that you have read on here helpful.
I have a brother like that too When mum first went into a CH her went to see her and told me that she seemed perfectly OK to him and he didnt understand why she was in there (hallo - not cooking, shopping, eating, washing, or doing laundry; getting into arguments with the neighbours over the bins and going out at 2.00am in just her nighty and banging on peoples doors because she didnt know where she was .... ). He has not been to see her since
Luckily he does not accuse me of ripping mum off. Do you have PoA for your mum? If you do you can probably ignore him like I do with my brother. I like Shedrechs idea of getting a needs assessment which may get you extra help. At the very least you will have in writing what her needs are.

 

[katy66]

thank you

Thank you all so much for responding. I was worried that I had posted rubbish.

Mum gets AA each week but puts that towards the cost of the day centres which are not cheap. Without her going to those I would not survive.

I did get a carers payment of £175 last year to spend on something to make caring better - I spent it on books as they are my release.
I get to read for an hour every night and I really look forward to it.

Dementia is cruel and horrible and I hate to see the frustration on Mum's face when she is battling to work things out.

Sometimes I fear that I am getting it too as I seem to forget a lot of stuff now and have post it's everywhere - suspect though it's down to being tired and low.

 

[katy66]

Hello Katy. I am glad you dipped your toe in the water and made your first post.
Families eh ...... You are obviously doing your level best for your Mother ,it's such a shame your brother cannot see that and is unwilling to help.
Please try not to let your brother get you down, I don't normall like to speak badly about other peoples family members , however it seems to me his values are a lot lower than yours and he is the loser in this, yes you are tired and worn out (((((((hug)))))) but he is losing out on some good times with Mother.
Hold your head up high.

Thank you for your reply and wise words. I have been mulling over it for a few days and I realise that you are so right. My brother gave very little time or support when my father was dying and even less for our aunt. It looks like he is going the same path with mum. That is his choice and as you said it will be his loss. I will hold my head high!! Thank you

 

[Aisling]

Thank you for your reply and wise words. I have been mulling over it for a few days and I realise that you are so right. My brother gave very little time or support when my father was dying and even less for our aunt. It looks like he is going the same path with mum. That is his choice and as you said it will be his loss. I will hold my head high!! Thank you

Hi Katy,
It is awful when you are left on your own but you are doing great so be proud of yourself. I understand the frustration and loneliness. I have no help from OH family at all. His brother lives up the road from us and never calls to see him but tells people how he is!! I have no idea how he knows so much as we haven't seen him for two years! People can be strange. I was furious but have accepted it now.

TP is my lifeline. You will get great support here.

Virtual hugs from Ireland,

Aisling

 

[lin1]

Hello Katy.
I think it's more than likely stress , tiredness and or depression that is causing your memory problems. Though as you're worried it would be a good idea to have a chat ith your GP just to put your mind to rest. I know when my mum was alive it became a standing joke between dad and me whenever we forgot something which was often ! that we should take some Ebixa.

We had a money grabbing selfish so n so in our family , ( Thank Heavan my Dad is nothing like his ex brother , they're as different as chalk and cheese )who hardly did a thing to help his parents when they were terminally ill. So you see I'm another who understands where you are coming from.

 

[fizzie]

Thank you all so much for responding. I was worried that I had posted rubbish.

Mum gets AA each week but puts that towards the cost of the day centres which are not cheap. Without her going to those I would not survive.

I did get a carers payment of £175 last year to spend on something to make caring better - I spent it on books as they are my release.
I get to read for an hour every night and I really look forward to it.

Dementia is cruel and horrible and I hate to see the frustration on Mum's face when she is battling to work things out.

Sometimes I fear that I am getting it too as I seem to forget a lot of stuff now and have post it's everywhere - suspect though it's down to being tired and low.

Does she get the higher rate Katy? and also do you have pads from the NHS for incontinence. I never thought my ma would use them but she did and they are free, makes a huge difference to the washing. Contact your continence nurse through the continence service at the local trust
you are doing an amazing job!! It is exhausting but i agree that lunch clubs are a life line x

 

[katy66]

Does she get the higher rate Katy? and also do you have pads from the NHS for incontinence. I never thought my ma would use them but she did and they are free, makes a huge difference to the washing. Contact your continence nurse through the continence service at the local trust
you are doing an amazing job!! It is exhausting but i agree that lunch clubs are a life line x

Yes she gets the higher rate of 80+ per week but the day centres total 110+ I have been buying pads from supermarkets as I was told the NHS ones are not very nice. It is a battle to get her to wear them so I think softer ones are probably better. Mum does pay towards my shopping bill so I am not too worried about the cost. We do muddle along quite well mostly and I think that now I am coming to terms with ignoring my brother I will be more relaxed. In fact I slept quite well last night, only woke up three times which is the best for me in over two years! I actually slept for a solid 14 hours just after the last house move. My poor OH was quite worried!! Good job we have a brilliant chippy close by and him and mum enjoyed it! Mum has been unusually quiet since my brother visited so I guess she is pondering on it a bit. She usually forgets who is who but must remember something different happened even if she is not sure what. It's a funny old game trying to work out what triggered certain behaviour and I do keep a log of unusual things as they do kind of make sense later. Tonight she is bothered that her boss doesn't know where she is? As she retired from work over 20 years ago it seems odd but it's probably Sunday night preparing for Monday morning. I just said don't worry everyone who needs to know does know.

 

[Shedrech]

Hi katy66
you are doing so well by your mother
I'm a bit concerned though - it may sound as though I'm harping on about money, but actually it's important that you are not disadvantaged when you do so much for her - and often it is an indicator of doing too much yourself
It's good that the AA pays towards her day care - and of course I don't know your mum's financial situation - don't be afraid of using her money to fund anything that is for her; I'm sure she would expect to pay her way in life as any adult does
so although you say that she pays towards your shopping bill - please do make sure that you accept payment for her share of food bills and anything that is bought only for her - and I hope that the payment of utility bills is split fairly between you - you shouldn't be out of pocket at all
then, please also consider having a cleaner - and splitting that cost fairly too - it will save your energy for supporting your mum
I'm glad you've slept better, you'll feel better for a good sleep - IMO you're right to put your brother in perspective; if he chooses to absent himself, it's sad, however it's his choice and you have enough on your plate (if I find myself thinking of someone unhelpful I actually tell myself to stop it and replace that thought immediately with something of interest to me, might just be the latest shopping list or my plans for my garden; much more positive)
very best wishes

 

[RedLou]

Katy - why don't you get a laundry service for all the laundry she creates? (IE her money pays for it.) You've got to look after yourself. You are important, too. Your life matters. Don't ever let your brother's nastiness affect your own self-esteem so you act as if your life is unimportant. Dementia tends to do that to the carer anyway, and you certainly don't need the message reinforcing by someone as limited and self-absorbed as (I'm afraid) your brother and his wife sound. *hugs*

 

[katy66]

You are right. I have been thinking that I don't matter. And yes I will take some funds to pay for things. After all mum chose me as attorney for finance and health matters so she trusted me! Thank you.

 

[Aisling]

You are right. I have been thinking that I don't matter. And yes I will take some funds to pay for things. After all mum chose me as attorney for finance and health matters so she trusted me! Thank you.

Hi Katy,

TP keeps me going so am checking in with you again. You are doing great. Families!!
Just an idea, I used to try to keep Tim doing stuff with me eg dusting, sweeping etc and this kept him occupied. He is not able to do much now but I still give him a duster and sweeping brush! Yes he sweeps the same spot!

It is exhausting and frustrating. I have never experienced like this.
No one knows except ourselves. I hope you have a supportive understanding doctor.

A person I used to know cared for her mother for years. No help from other family members but quite a bit of hassle from them as to what was happening to her mother's funds.

Keep posting.

Hugs from Ireland.

Aisling

 

[CJinUSA]

You are right. I have been thinking that I don't matter. And yes I will take some funds to pay for things. After all mum chose me as attorney for finance and health matters so she trusted me! Thank you.

Hello, Katy,

My, you have done an amazing job of pulling up your own roots and committing yourself to taking care of your mother. What a loving sacrifice you have made.

We invited my mother into our home for a lengthy visit (10 1/2 months) in 2008 and then permanently, when we saw it worked out, in 2009. At the time my mother moved here, my sisters were popping in every month, on weekends. I work. This meant I was not only cooking and cleaning for my mother but also for my sisters three of the four weekends every month. After awhile, I told them it was too much work for me, and they slowed down their visits. They wanted to make sure my mother knew she loved them, even though none of them invited her into their home. One sister said "O you need breaks. I'll come over once a month and stay overnight so you can go out to dinner." This happened exactly twice (so we could go out to dinner) in the last 7 years.

I slowly came to the realization that my sisters could not be relied on. It was a very hard pill to swallow.

I agree with the others. You need help. I did not give up my job, so we hired caregivers in for the days I couldn't be here. Then, eventually, we hired them for all seven days in the week. I did all the work myself between 2008-2012. In late 2012, I threw in the towel and got the help. I used my mother's money, because the carers were being hired for her care. It saved my sanity and my marriage to have help in. We miss the privacy, but we have gained our lives back.

I don't know if this would be possible for you, but do please consider hiring assistance so you get a day or two off, or some hours off. You need some you time before you get lost. I so hope you'll find a way to get some help.

If it's that you can't afford it, I hope others might share how they got help from social services. Fizzie and Izzy and Stanley are particularly good at helping people sort out what kind of help might be available. Maybe they'll come by soon.

 

[katy66]

Thank you for your nice comments. I was feeling quite relaxed yesterday but as we all know it doesn't last. Last night or should I say early this morning I was woken by Mum yelling the house down. When I got down to her she announced that her leg was killing her and I had to chop it off. She has been recovering from cellulitis for a week, on a course of penicillin tablets and keeping it raised. I had noticed that the swelling and redness had almost gone. Anyway two hours later having made tea, filled a hot water bottle and placed 3 more pillows I was able to get to bed. This was 4 a.m. I lay wide awake listening to the various snoring around the house! (mum, OH and dog) then at 8 a.m. went to check on her. She was sitting on the bed in tears. She was scared of them, they were really scary ....
I finally worked out that she was actually referring to her slippers. So I removed them from sight and she settled.
I can only assume that it was some sort of association of new slippers (Christmas present) = sore leg. Anyway I have just ordered her some new ones with priority delivery that don't look at all scary - being pink and fluffy!!

With this cellulitis. It is a bit of a worry. Mum went into respite mid January as I had to go and deal with my late Aunts house. When I collected Mum the CH manager told me she had a swollen leg but it was probably down to less activity than normal. Anyway it didn't get better - hence the Dr's visit and the penicillin.
I have since looked up cellulitis and it appears to be caused by infection in "less than clean" surroundings. Horror.
I know I keep Mum clean, I shower her three times a week, and I change her bed and towels and least once a week. Clean clothes every day if not more often. Is it possible that she could have picked this up in the respite home?

I was looking forward to having a break from Mum later on in the spring with her going to respite again. Thought it would give me and the OH a chance to say hello again!
I used the respite home on recommendation from the support group. It looks really nice and the staff are brilliant. The deputy manager came here to meet Mum before she went there and OH and I had a guided tour of facilities.
It is not a cheap one either - £800 for the week.

Please tell me it is just a coincidence and that Mum would have got the cellulitis anyway?