Sarah’s story (part three): ‘How long can I do this for?’

Sarah is a 30-something, full-time carer for her mum who has Alzheimer’s disease. Here she looks back to her old life and the one that lays ahead.

In the final part of our three-part blog series, Sarah looks back to her old life and the one that lays ahead for her and her mum.

Sarah is a 30-something, full-time carer for her mum who has Alzheimer’s disease. You can read the beginning of her story in her first post and second post.

Sarah's mum, who is a full-time carer

Sarah’s mum in their lovely garden

Sarah’s story

On the occasions I've reached a saturation point and chosen to talk to someone about my stresses and exhaustion, I find it hard to articulate.

I feel myself sounding ridiculous and actually, any advice given back in response is always directly linked to my mum (‘why don't you bring in a carer?’, ‘have you thought about what the next steps will be?’) and not anything to help me.

I don't want to ask for help personally as I feel like it's saying that I cannot cope. Which I can, I just need time off, guilt-free time off where I don't have to worry about her as I know she's in the best hands.

And the same can be said for mum, she is visibly terrified any time I say I am going anywhere so to alleviate the guilt associated with that would be incredible.

Talking to other people

I’ve realised that I just need to talk to the right people - who understand actually what it's like to be a live-in carer, who don't even necessarily know my mum but can completely appreciate where I am coming from and the emotions involved when you can't go ‘home’ and rewind in private.

Someone who understands the grief of having your entire life change, whilst watching others carry on, seemingly unaffected and in blissful ignorance of what's happening to us daily. I don't want sympathy, far from it in fact. I'm not a martyr but sometimes just some acknowledgement and empathy.

An attempt to appreciate the stress involved for me instead of just offering practical advice and unintentionally criticising: 'you should just do this...' or 'you make things hard for yourself…’ I spend all of my time thinking about what I can do to make things easier for mum at home. 
That's why anyone who asks how mums doing generally gets a blanket response, as how can I possibly explain all of the highs and lows and difficulties we've experienced over the past few weeks when just a day is hard enough to explain.

How long can I do this for?

I don't honestly know, but I do know that that I will do this for as long as I physically and emotionally can manage it.

I know the care I give her is the best possible care for her and she is at her happiest. I don't want to look back with regret that I could have done more or I've let her down when she still knows who I am and enjoys everything I do with her.

I have created so many incredible memories with her and it's important for me to keep doing that, so that this disease doesn't entirely consume her life until we have no choice.

Yes, I miss my old life, having my own home and own things around me, sitting in my living room with a glass of wine, flicking through the channels alone.

I miss deciding on the night what I fancy to eat, I miss my independence, being able to make plans and nip out without impacting someone else, my old job and financial security from a career I worked bloody hard to get to the top of. 

Do you know one of the things I miss the most? I miss the conversation. Being able to talk to my mum, as my mum, discuss what's happening in a programme we are both watching with a level of understanding, to have that level of like-mindedness we always used to have. General chit-chat!

That's what I miss the most and is hardest to explain as it's incredibly isolating.  I also feel guilty for feeling all of this. I feel guilty for the feeling of resentment that sometimes creeps in because it's then overwhelmed by pride and how lucky I am to be able to do this.

To be in a position to make such a positive impact on someone's life is an honour.  Would I choose to do this again? In a heartbeat. 

Sharing your story

Writing and sharing a story about how you or a loved one has been affected by dementia can offer some relief for both writer and reader. Visit our Your story page if, like Sarah, you’d like to share your journey. For information, support or advice about dementia, please call our National Dementia Helpline on 0300 22 11 22.

25 comments

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Sarah I suggest you get a "Personal Budget" from NHS via a Continuing Care Assessment done by the local Complex Case Unit . Your GP should refer your Mother asap . This will take some time to arrange & I suggest you prepare for this carefully , taking advice from my website https://continuinghealthcare.wordpress.com

Your situation is similar to my story where I had to retire early to look after my Late Wife Pauline. Introducing the first professional Carer to call say for 2 hours each afternoon will enable your Mother to develop a trusting relationship. This will give you essential time off for your own sanity & strength ! When NHS agreement is obtained then benefits should be backdated, provided you keep evidence of costs paid privately. As & when your Mother's health deteriorates the 2 hours daily can be increased with agreement from the local Clinical Commissioning Group , who organise all the finances of NHS .
This will ensure your Mother can remain in her Home long term , as was Pauline, surrounded by loving care in familiar surroundings.
It was helpful to get out in the car with Pauline daily to a local Park, or Garden Centre if wet , to add interest to each day. Other ideas can be obtained from Carers Trust who should have a local office. They will advise you on your own long term care to ensure you stay strong & able to manage . Best wishes.

Hi Sarah,
I totally get what you are saying about missing the conversation, normal everyday chitchat that flows back and forth without an uncomprehending pause.
I am my Dad's carer. I think we may be further down the road. He is 87 and I also have a long-term condition. 2 months ago I had to ask for help to keep helping him. It was SO hard but had become necessary as I was running out of steam. In my life I have always been the one to help, and with a background of 30 years nursing, I have a strong sense of vocation. Sometimes that background has helped, putting on my nurse's hat, so to speak, to help him with his personal care that he has forgotten how to do. Other times, I have felt so lonely and incapable of getting things right for him, because like you I love him dearly. I sometimes feel quite angry when well-meaning others message or say, have a lovely day or weekend, and have the liberty to live as they wish. And I agree, it's well-nigh impossible to put into words the very frequent surreal and 'ground- hog' experience that I live.
But I recognised that I didn't/don't want to reach a place of resentment, impatience or irritability with Dad born out of fatigue and desperation. So that is why I'm grateful to move into the next chapter of a personalized package of care. I'm hoping that it will make our time together more relaxed and that it will mean Dad will continue to enjoy our time.
In the end, we have to do what feels right. I know I couldn't live with myself if I didn't do my best.
I thank you for sharing your experiences , I feel for you and send you lots of encouragement for whatever lies ahead.
With love 💕 Peggy x

Hey. My mum is suffering from Alzheimer's. I don't use the word suffering lightly because that is what is happening. My Dad is her full time carer and will not accept the fact he needs help. He loves my mum with all his heart. I know that he thinks that he can look after her but at 73 years old I see his health deteriorating as well as my mums wellbeing. He is a very stubborn and strong willed man but this situation is not working. I work away from home through the week and he brings my mum to our house every day as he thinks doing this she will remember everyone but this is not the case. It is well beyond that. What can I do?

Hi William, sorry to hear your mum and dad have been having such a difficult time. Many couples cling together in adversity and older people are prone to believe that they don’t need help in caring for the other, even when others can see them struggling. It can take time for partners to appreciate the effects of Alzheimer’s disease and the increasing need for care that can be shared with the family and professionals.

Talking to your dad about these things can help, as can a gentle reminder that he needs to care for his own health so he can support his wife for as long as possible. These links may be useful:

Dementia guide

Carers: looking after yourself

What is Alzheimer's disease?

Remember you (or your dad) can always talk to an advisor from our National Dementia Helpline on 0300 222 11 22. They'll be able to provide you with more information and discuss further options around care and support.

All the best,

Kyle

Hi William
I feel that our lives mirror one another yet we have the alternate parent caring for the other and yet they are just as stubborn. My dad was diagnosed with semantic dementia about 1.5 Year’s ago but I knew it began sooner than that. I am struggling to know how to support my mum who claims she is ok (but I know that she isn’t) as well as managing my own personal grief and guilt about how u could or should help both him and her.

We went through this for years. I finally got my father to accept help when I pointed out he would have more time and energy to concentrate on his relationship with my mother if someone else was taking care of her physical personal care.

Thank you for sharing your feelings. They resonate with me a lot

I know how you feel and I would give anything to have one more “normal” conversation with my mum. I miss so much telling her about my day and going for a coffee with her. You are doing a fine job, we were lucky to find good daycare and respite for mum at a local home which she enjoyed going to. She is now in a home full time but again it’s a lovely home and she is happy and they do so many good things with them.

Please could you tell me where the home is that you are so happy with
My mum is In a care home at the moment and to be honest I am not a 100% happy with her care

Glad your mum is happy and is being cared for
Kind regards
Teresa

My nanny has alzheimer's. Its terrible so sad to see her like this.

Sarah, a very honest and open blog, which hopefully has helped you, if only for a little while. What you are dealing with is so hard, especially as it is your closest relative, your Mum.

From how you talk about your relationship past and present, I am sure that if your Mum could, she would do anything to help you live the life you planned, free and liberated. She would probably understand all the feelings you have and find them totally reasonable and normal feelings to have. That’s what they are...normal. I would imagine she will be eternally grateful for making her life so amazing at an incredibly difficult time for her as well as you.

The selfless act you undertake every day is commendable. Yes you and your Mum are fortunate you have been able to do this, but that does not mean that it is without difficulty for you emotionally and physically. Losing your Dad so suddenly and then dealing with your mothers deterioration must be the most difficult thing. I have seen first hand the devastating impact this horrible disease has on families and empathise with you. Losing someone whilst they are still here is horrendous.

Remember yourself though.... talk to people, take any time you do get, even if it’s an extra few minutes before getting home from work to just take for yourself. Taking time out in the car to scream and shout.....let it out.

To have the chance at guilt free time, I would think getting someone else who you trust and who you think your Mum would be happy with, to be with her for a little bit may be an option, but so difficult. I understand that in order to give your Mum the best care and to keep her calm and settled, having you there is the best option and getting someone in may not do what people say it will, i.e. you can not switch off despite being away from your Mum. Never ever think that if you are away from your Mum and do manage to switch off, even for a few minutes, that this is bad and you should not feel guilty for it. You deserve to be able to switch off if you do get the rare chance to. The disease unfortunately may make it difficult for your Mother to understand and display the emotion she normally would, but remember that you are doing the best for her by taking the occasional little bit of time for yourself.

I see people have given practical advice on how to help with your Mum, but I get the sense that this is not necessarily what you want, however may be necessary for respite for yourself. You sound like an intelligent lady and you know what help you may need for her.

I am a believer that everything happens for a reason, this has been a tough path for you both, but you wouldn’t have been given this path if you couldn’t do it. You are doing all you can to give your Mum the best life in such demanding circumstances....amazing. This is your life too, it is not on hold, just following an alternative route to your planned one. Everything has ups and downs....never feel guilty for how you feel, it’s how you manage the feelings that matters to give yourself the healthiest life possible.

Dear Sarah

I understand so well what you are describing here. I would urge you to take Peter's advice and to start introducing a carer into the household, even if it's only for an hour every two days in the first instance, so that your mother can become acclimatised to having a new face around.

My mother has vascular dementia as did my father who passed away last Christmas. I think we are further down the line as they both started showing signs of dementia 15 years ago. There will come a point where your mother may forget/lose the ability to walk and even if you think you can cope mentally you will not be able to cope physically on your own.

So introduce a carer now - you need time out for yourself now. This may be what you don't want to hear but unless you have support for yourself you won't be in a position to support your lovely mum.

With lots of love,

Jill

Hi Sarah,
Thank you for sharing your story. You are not alone in feeling like this. Dementia is very cruel, the way in which it takes away so many pieces of your loved ones personality. To the point where that person becomes so distant, it feels like they're not there anymore. It is extremely important to receive support, and respite for both you, and your mother. Any feelings of guilt should be counteracted with the greater good philosophy. I do understand and have experienced those feelings where your loved one is very dependent on you, and you in turn, feel an extreme amount of responsibility towards them. It is more than ok to do your own thing and have your own time, I'd say it's essential. Make it part of your routine. Don't be so hard on yourself. Sounds like you're doing a wonderful job. My advice would definitely be to take on more support. It's your life too and you are more then entitled to live a little. Get the cover you need to get out there and take an exercise class or meet up with a friend or simply take a walk. My point is do something for you every week. Wishing you both all the very best.

All the above ..good advice. I had to give up work 6 years ago I am 62.so no pension yet. I am looking after my husband with early onset dementia. He is now never alone not even for 5 minutes. I have care package from council. I go away. Have days out with friends. Its not the life we planned. But like you this time is so precious. But you need. Your time. Pleaseget help. Xxxx

Thank you Sarah for your blog it rings so true to me, my husband has Alzheimer he is 85 and I miss very much having a conversation with him I think we are having talking to each other then suddenly realise I am really talking to myself, I hate talking about him to anyone I feel as if I am being disloyal.

Dear Sarah and all carers, take comfort in the fact that you are not alone, you are a part of a team of amazing people who make the world a better place. Chin up, keep smiling and put one foot in front of the other. Relish every moment of recognition, smile and hug from your loved one - it makes it all worthwhile. We have been caring for 3 parents with different dementias, do the school run for 2 grandchildren and 40 hrs each week of baby minding our 1 yr old grand-daughter. We reluctantly had to place our parents in care but visit and take them out at least twice weekly. We are on standby for emergency hospital visits. We heart breakingly sold 2 homes and agonised over what to do with personal belongings and fought the pathetic beaurocracy involved with all the finances/legalities. Our journey began 4 years ago, we take one week at a time. Relish every '5' minutes of peace or rest time. We appreciate the little things in life that now matter a lot. We strive to do our very best for everyone who depends on us and know that it won't be forever. We know several families in similar situations. We sincerely hope that the whole care system will have greatly improved by the time we need to be cared for. Your loved ones are truely blessed to have you there for them. Keep up the good work.

Sarah, I am so glad I read your story, my mum had Alzheimer’s, she died almost fourteen years ago . When I talk about her I feel disloyal she was a good mum and wonderful grandmother. I loved her dearly, but I will never stop feeling guilty for her going into a nursing home. You are doing a wonderful job, don’t please feel guilty. Sandra.

Dear Sarah

What a moving and insightful blog. Thank you for sharing this with us.

I can identify with many of the things you talked about as my Dad had Alzheimer's, he recently passed away. My Mum was his carer. I was involved from a distance as I was geographically far away though it's surprising how much can still be done even when not physically there all of the time & I visited regularly.

I think you have nothing to feel guilty about, you're doing an incredible job which is a massive and stressful responsibility. I relate to how hard it is to sum up the frustrations to others as they can be so constant and exasperating at times, you experience more in a few minutes than others might experience in a week or a month. It's hard to stay sane at times .... & deal with the guilt, despair & at times pride, happiness & satisfaction. Then of course there's the worry about the future.

You sound like an intelligent and insightful lady. You'll know when it's time to get more help or it's possible something may happen which forces this. Everyone's path takes their own time and course. Talking to the right people as you say makes all the difference. Some unfortunately just don't understand and it can make you more frustrated! This is always true in difficult life events.

I wish you and your Mum and family all the best. Please do remember what an extraordinary thing you are doing. Although it can feel like the loss of so much you've also acquired many great skills and I'm sure even more empathy with others. These will never leave you. It's so nice that your Mum also has the insight to appreciate this. Please do take time for yourself when you can.

Best wishes,
Fiona

Xxx

Hi Sarah,
Thank you for sharing your journey. I am experiencing exactly the same range of emotions and feelings caring for my wife who was diagnosed with early onset Alzheimer’s three years ago.
I thought that I could cope on my own but had to ask for an assessment from social services 6 months ago. We now receive 14 hours a week care which is due for review as my wife’s condition has deteriorated recently. A finacial contribution is made by ourselves towards the cost of the care package. We have also started two days a week care at a local day centre which has helped.
I am not sure Sarah either how long I will be able to do this for, as the strain at times leaves one exhausted and with little self confidence.
I try and have 2 to 3 days away on my own every 2 months but it takes a great deal of planning.
Please ask for some care for your mother, it will give you a break and some ‘me’ time.
Best wishes
Dafydd

Hi Sarah, thank you for sharing your storey. I too promised my dad before he died that I would look after my mum. Dad died in 2011 and little did I realise that in 2017 I would still be her sole carer. The only difference in my story is that Mum is 95 and I’m 62. Do you get Carers allowance, does your mum get Attendance Allowance? These are non means tested and if you don’t get them, apply for them. To enable me to recharge my batteries and go to my home 3 hours from mums I’ve used a live in carer service, expensive but worth it for me to get a well needed rest and a bit of normal conversation. Mum hates me leaving her, I hate leaving her but I need to have some normality from time to time. Have you had a Carers assessment, if not get one. Your local council will be able to help or look up on Google. You are doing the right think and like me will have no regrets when your Mum passes away. Take all the help there is, financial and practical. You are doing an amazing job, well done.

Thank you for telling your story. I understand how you feel as I am careing for my husband who has Lewy body dementia. Until April this year I was like you and doing everything and saying I was fine to anybody who asked, and then he got shingles and I realised how vulnerable we where and although I did not want to do it I started to contact all the various departments to see what help was available. I might add my husband was not best pleased but did realise I needed help. We now have a carer for 5 hours a week which helps me to get out and about and know that he is safe. Try not to feel too guilty because you do need a bit of me time.

Thanks to everyone who has replied to this very moving account of nursing someone with Dementia . I hope you have obtained a lot of helpful advice Sarah . You are one of many thousands of people who feel isolated & exhausted "running the World" on their own .
A good friend of mine has just received a letter from the local Clinical Commissioning Group advising that NHS will pay for her Husbands Care in a Nursing Home . She had been paying over £1000 per week for the last 12 Months. She followed the advice in my website https://continuinghealthcare.wordpress.com/
His case was not Alzheimer's Disease , although similar symptoms . There was not space in her Home to provide the care required unfortunately . If you have a "Primary Health Need" & this can be proved at an Assessment , then NHS should provide at their expense all the required Care. This is not Means Tested . I hope with all necessary help you can Care for your Mother long term , as well as looking after your own health needs . Best wishes .

Sarah, I am sat here in tears at your predicament . I so feel for you. Your sentiments are exactly as I felt with my dear Mother. She died after only of year of suffering ( and it IS suffering) this terrible disease. As you say, she didn't deserve it. I didnt know about the advice that Peter has given and it seems a brilliant way of getting help? Introduce someone gradually to your Mum and get some respite for you , where you know she will be safe?
I do wish you the very best for your journey and your Mum too

Hello Sarah, I don't generally reply to blogs but your story has moved me greatly. My father died two years ago and we went through a similar process , with me spotting the disease and dad denying it initially before he sadly passed. My brother is now mum's prime carer and has sacrificed his life. This leaves me feeling guilty. To be honest, I've come to realise that whatever you do, you never feel it is enough and have to learn to live with the feeling of guilt that this brings. I too miss my mum. She has changed considerably and is no longer the sweet, loving, capable woman I have known all my life. I know we are strangers but I am sending you a big hug.

Hi Sarah

I think you just need someone to talk to who listens to what your trying to say.
Someone who can comfort you at times maybe someone who has gone through what you are going through. Someone you can feel relaxed with to tell them what - evers on your mind someone whos got time for you.

You cant be off wanting to tell family members and friends what you are going through. Everyone asks you are you OK. Do they really want to know when you say lam not. Sometimes its easier to say yes rather than trying to explain to them what you are going through.
Lots of people only half listen to you because they seem to think you are making too much of it putting it down to just old age and they ask you have you tried this and have you tried that. You are offered a lot of advice and its difficult to know what to do sometimes.
Like you l have had to relieve myself sometimes by going into the garden and screaming once as loud and long has l could. Why ? Because you get to the point you dont know what to do next or who to talk to.
You just have to do the best you can to cope with the changing situation and you are on your own.

It seems from reading the replys to you that there is still no set standard imformation given by the GP, when someone is dianosed with this horrible thing
Things like what do you do now ? and a list of different people you can contact for help \ how to apply for attendance allowance and others.

I felt l had to write this just to show you that there are other carers like you who do know what your going through

l wish you the best for future.

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