Feeling hopeless

[Amy in the US]

Alison, I'm not good with the tech advice but if you would like instructions on starting a new thread, I'm sure someone here will oblige. Otherwise, it's no problem to continue posting on this one.

When I read the stories here on TP, I wonder how any of us cope, at all, ever, to be honest. I am not a hands-on caregiver (mother, age 73, Alzheimer's, in care home since February, 2 weeks sectioned in hospital previous, and probably 3-7 years of the beginnings of her dementia before that, which I just didn't know what it was) and have the greatest respect for anyone providing care in a home setting. As a hands-off caregiver, I can tell you it has its own set of challenges, and while I initially thought I was coping okay (after the hospital stay and rush to move to the care home), I will tell you, very honestly, that there are times when I am so overwhelmed, that I think the only thing that could possibly help me, is being dead. (I do not mean that I wish to kill myself, as I haven't got time for that, just that if I were dead, I would not have to do this job I hate so much). Obviously you are in a very different place and I am making no judgements, just saying, I hear you are feeling unhappy and overwhelmed and that you are failing.

Please do try to remember that none of this is your fault and you are not bad or a failure or failing your husband; the disease is the enemy.

As I'm in the States I'm useless for recommending carers' assessments and things of that sort and will leave that to the locals.

However, it clearly sounds like you need help and support in some fashion. I beg you to explore some options for yourself in your area, especially if there is no family nearby. You must not become a prisoner in your own home; that will do nobody any good. I understand that your husband and/or you may not like going out or having "strangers" come in, but if you push yourself so hard that your health fails and/or you have carer's breakdown, how does that help anyone? I'm sorry if this sounds harsh or preachy and it's not my intent, I assure you.

Here are some ideas I have tried and/or seen mentioned here on TP and in my support groups, et cetera:

-TP is a great resource and it's always open. I feel it's literally saved my sanity.
-support groups in your area (carer's cafe, Alzheimer's society, local non-profit groups, possibly at area care homes; perhaps someone more local than I am can help direct Alison?)
-Age UK
-The Samaritans have a number you can always ring if you need to talk to someone
-if anyone offers help, always immediately say yes and schedule something. Don't think about it. Don't get back to them later. Just say YES to help.
-hiring private caregivers to come in
-hiring help with domestic chores (cleaning, laundry, cooking, errands, gardening, you name it)
-exploring day care and respite options in your area
-making sure you have some time for you, to sleep, exercise, go for a walk, talk to a friend, anything to care for yourself
-talk to your GP about medication and/or counseling. Do not sugarcoat how you are feeling or what the day in, day out caregiving is really like. Describe your worst day, not your best day.

And I know there's more, but it's all I can think of right now.

Please do take care of yourself. You are important, too.

Best wishes and will be thinking of you.

 

[Alison N]

Dear Amy

When I read about the care and concern that you and others post on here it brings me to tears. There is so much understanding that can only be felt by people that are on this terrible journey and I understand how things would be much better if we were dead just so that we didn't have to deal with anything anymore. I would never do that but I just want it all to go away and I know it won't. I am my lowest ebb in the mornings as I know that there is another day ahead to deal with. I see my husband struggling and all I want to do is make him better. The doctor is my first port of call so I will take it from there.

Thanks again xx

 

[Cat27]

Alison there are always people around on here early in the morning. Come & talk to us.
See your GP ASAP.

 

[jaymor]

Hi Alison,

An assessment for you husband will show what help he needs and the carers assessment will show what help you need to care for your husband and yourself.

You will also get guidance as to what is available for you both e.g. Day care, cafe's, groups, all of them helpful. Day care would get your husband socialising with others in his position and give you some time to yourself, cafe's can be visited by both of you and again there is usually lots of help and information on hand should you need it. Groups are for carer and cared for and some for just the cared for. Singing for the brain groups are good too. Social and fun. There are people who befriend, sit and talk or take the person with dementia out if that is what is wanted. There is a lot out there just difficult to find by yourself.

If you are self funding then you just go ahead and pay for the services you want to use.

You do need to look after yourself and if you need a little assistance from your doctor then there is no shame in that. You need to be feeling well to do the caring you are doing and of course use Talking Point when you need to scream, let it all out, we understand because we have all been there and understand.