Now Ye're Talking - to a Family Carer for her husband

Boards.ie: Niamh

National Carers Week is taking place from 13th-19th June this year, and to help celebrate we are having two themed AMA’s this week. The first was with Ger who takes care of her son Ethan at home.

National Carers Week is a week of activities and events to help celebrate the work that Family Carers do. Family Carers are usually family members who provide care and support in their own home to a person with a disability, frailties due to aging or who has a serious illness. Family Carers contribute nearly €4 BILLION worth of care to the country, but there are a lot of myths and misinformation out there about what Family Carers actually do. This is your chance to find out a little bit more and ask questions to help understand what life is like in Ireland for different Family Carers.

You can find more information about National Carers Week by checking out the website or the Facebook page.

This next AMA contributor is a Family Carer for her husband. She will be available to answer your questions until Saturday.

Thanks everyone

I'm a Carer for my Husband, AMA

Thank you for inviting me on Boards. I will do my best to answer questions you may have about being a family carer- especially a carer of a spouse- from my experience so far.

Gloomtastic!

Welcome to Boards!

How long have you been looking after your husband?

My mum cared for my Dad for a couple of years before he passed away and to say she had the patience of a saint is an understatement. He had a kind of dementia and could be extremely difficult, especially in the middle of the night.

Do you get much respite? Can you rely on family help much?

I'm a Carer for my Husband, AMA

Gloomtastic! wrote: »

Welcome to Boards!

How long have you been looking after your husband?

My mum cared for my Dad for a couple of years before he passed away and to say she had the patience of a saint is an understatement. He had a kind of dementia and could be extremely difficult, especially in the middle of the night.

Do you get much respite? Can you rely on family help much?

Hi Gloomtastic

My husband has a rare neurological illness which means he is in a wheelchair as well as dementia. I have been caring fulltime for three years.

I get reasonable respite though I guess all carers feel they could do with a bit more! We only have one son and all my family lives in Australia. My husband has two siblings who live fairly close. I made the mistake originally with the family of more or less saying “I can handle this” so they didn’t feel they could interfere. But eventually I hit the wall and now they are there when I need them and there is a roster for three hours each Sunday which really helps on the weekend.

TToledo

Hi AMA

As this is Carers Week, have you found out any information or help that will lighten your caring load?

I'm a Carer for my Husband, AMA

TToledo wrote: »

Hi AMA

As this is Carers Week, have you found out any information or help that will lighten your caring load?

I am on the lookout for ideas that will lighten my load all the time. I suppose lightening my load mainly falls into two areas -ideas that help me emotionally and ideas that help me in physical caring.
One of the things that has helped me emotionally has been learning as much as possible about my husband’s conditions especially the dementia. For example when I started out I knew next to nothing about dementia and carried the general misconceptions that uninformed people have. The quite extensive study was well worth it as it has lightened my load emotionally to understand that my husband is still the person he was before the dementia and to keep this intact it is my job to carry the memories about him and his memories for him.
Emotionally I have also learned-the hard way- that as a carer you can’t ‘do it all’ on your own. No matter how hard it has been I have learned to ask for help and been pleasantly surprised at the response. That has certainly lightened my load.
As far as the physical caring side goes if there is a difficulty I try and think “how can this be done easier”. It is so easy to fall into the trap of doing the accepted thing and complaining about it if it causes problems. A very small example of this recently has been crushing tablets three times a day with a terrible twisting crusher that almost breaks your wrist ( it seems to be the only one on the Irish market.) When asking the question I went on line and I learned that it is possible to buy a pill crusher in America that grinds the tablets with a handle –magic.
I also learned to pick the brains of the paid carers who visit in especially in relation to aspects of physical caring. They have generally been caring for people for years but are usually waiting for you to ask for advice!
I have discovered so many ideas about many aspects of caring to help lighten my load that I could go on forever! These are perhaps some of the more important ones.

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I totally get it if this seems to be a personal issue more than one that you can specifically relate to, but I said I'd ask anyway to see if you had input.

I have a younger brother with special needs and the care falls to my two retired (now elderly) parents, with a large amount of help from my older brother and myself; maybe even deliberately, to alleviate the guilt they feel for their unwillingness to give up their time and help. My parents aren't big talkers so they'd never discuss their feelings with me and don't really care how I feel either. They do, however, engage in a large amount of manipulation and lying to get more out of myself and my older brother - a fact I only recently copped when it was pointed out to me.

Would you have any tips on dealing with this? I know it's kind of outside of your purview, but you might know why they do it.

I've told my mother especially to just be frank with me and tell me "I really need a break today, can you please come over?" rather than say "There is an emergency, your brother was up all night having seizures and now I have to travel and this and that and blah blah blah..." because it stresses me out when I think there are situations out of my control, yet she persists in escalating very manageable issues.

From your experience, would there be any way of anticipating her patterns? What are the most difficult times, or could you single them out?

I really want to help more (and reckon it will fall to myself and older brother to do the bulk of the caring when my parents are no longer able) but I don't want to fall into this pattern of alienating and frightening the people who I rely on in order to get some relief.

livedadream

not a question but just a statement:

you are an amazing human being.

Keep it up.

csm

This may be too personal to discuss on an open forum, but how has your relationship changed with your spouse? How do you feel about your marriage now that the dynamic has changed?

Separately, has your situation changed your relationship with your family in Australia? I'm an emigrant myself and living away from family has a lot of emotional challenges, especially in times of crisis. How have they reacted and do you feel it has brought you closer to them or the opposite?

I can't really find the words to express my admiration for your commitment and love. I'm in awe of what you do.

I'm a Carer for my Husband, AMA

Heath Pitiful Milkshake wrote: »

I totally get it if this seems to be a personal issue more than one that you can specifically relate to, but I said I'd ask anyway to see if you had input.

I have a younger brother with special needs and the care falls to my two retired (now elderly) parents, with a large amount of help from my older brother and myself - our three sisters live outside the county; maybe even deliberately, to alleviate the guilt they feel for their unwillingness to give up their time and help. My parents aren't big talkers so they'd never discuss their feelings with me and don't really care how I feel either. They do, however, engage in a large amount of manipulation and lying to get more out of myself and my older brother - a fact I only recently copped when it was pointed out to me.

Would you have any tips on dealing with this? I know it's kind of outside of your purview, but you might know why they do it.

I've told my mother especially to just be frank with me and tell me "I really need a break today, can you please come over?" rather than say "There is an emergency, your brother was up all night having seizures and now I have to travel to Kerry and this and that and blah blah blah..." because it stresses me out when I think there are situations out of my control, yet she persists in escalating very manageable issues.

From your experience, would there be any way of anticipating her patterns? What are the most difficult times, or could you single them out?

I really want to help more (and reckon it will fall to myself and older brother to do the bulk of the caring when my parents are no longer able) but I don't want to fall into this pattern of alienating and frightening the people who I rely on in order to get some relief.

You are right it is quite difficult situation and one I am not really qualified to address but I have a few thoughts that MAY help?
My first question might be - Why do they “engage in a fair amount of manipulation of you and your brother?” It is possible they feel overwhelmed and don’t know any other way to get help-any help. They are elderly and being elderly myself I know how quickly I get tired even in relation to five years ago! What may seem manageable to you may be totally overwhelming to them. Again I find that as I get older I get stressed about things that didn’t give me a thought when I was younger. Now you will really think I am siding with them- I am not - just hopefully trying to present another point of view. If you were look it from their point of view. They have been caring for this child all their lives and even in when they are retired they still have no time for themselves or a rest from their continuous caring. Who knows they may have reached the end of their tether in relation to caring.
Perhaps it may be time for all the children come together to discuss the load for your parents (and yourselves) to work out how it can become manageable for all concerned. Those children who live far away can perhaps give some money to pay a carer to come in during the week. On the whole the hourly rate isn’t too expensive if you find a trained carer. I pay myself for 6 hours a week! It is likely that €50 a week from three overseas siblings could pay for about 12 hours care a week.
It also possible you might be able to call in the community nurse and explain the difficulties all round. I have found my community nurse has a wealth of ideas and referrals when I present my problems to her.
It is a very difficult for everyone in a caring role because it places huge burdens on people. It causes emotional responses that sometimes scare us – but that is all normal. I did receive some counselling a few months after my husband was diagnosed with dementia and found that really, really helpful. My GP organised 6 sessions free for me. I think it is available to all people in the community under stress.
I hope this is of some help and good luck you are clearly doing the best you can in a very stressful situation.

I'm a Carer for my Husband, AMA

csm wrote: »

This may be too personal to discuss on an open forum, but how has your relationship changed with your spouse? How do you feel about your marriage now that the dynamic has changed?

Separately, has your situation changed your relationship with your family in Australia? I'm an emigrant myself and living away from family has a lot of emotional challenges, especially in times of crisis. How have they reacted and do you feel it has brought you closer to them or the opposite?

I can't really find the words to express my admiration for your commitment and love. I'm in awe of what you do.

What can I say about our relationship? My husband was always most trusting of people and they nearly always responded in kind. I however can be very critical. I have never heard him say an unkind word about anyone and when I was giving out he would say either nothing or something positive that would I wouldn’t necessarily appreciate. But…. I realise now it kept me on an even keel and I do miss that very much.
I came had very critical parents who didn’t think I would amount to much. My husband let me have my head. He was AWLAYS encouraging. For the first time I felt I could do anything and as a result I flourished. I was even able to Climb Mt Kilimanjaro in my fifties! It was with his support I became confident and happy. I miss that and even now I ask him….even if there is no answer. A counsellor once told me - ask him anyway and you will feel an answer.
I was always the bossy one and that I hasn’t changed It is still one of the things he can still joke about at times.
I do try to talk a lot about what things were like in the past in order to relive them myself and try and remind my husband who he is. My biggest fear is that I won’t remember myself how he was in the past as time goes by.
My sisters live in Australia. My sisters are very supportive and we regularly skype. When possible they send money to support our expenses. One comes to visit each year. That is really all I can expect and I am happy with that. I have to rely on a couple of friends to support me emotionally. My son and his partner are great as well.

PaddyWilliams

As has been said already, you are an amazing human being. I wish you the very best of luck in everything.