feeling rubbish

katherine

Registered User
Sep 5, 2006
57
0
Hi

My mum was diagnosed about 6 years ago. She's now 61. She's single and has been cared for at home, now by 4 carers who look after her 24/7. She is doubly incontinent, can't speak, feed herself and mobility is getting worse and worse.

I've been as positive as possible throughout. Myself and my husband moved from London to manage her care. We now have two small children. Because we live somewhere pretty rural now, I can't get a decent job and my husband works from home. And basically we aren't living where we would like to build a future.

I feel now that things have to change. And i feel really depressed about that. I feel like we need to alter our priorities and look to the future. I'm stressed so much with staff issues and mum's health issues and feel like i'm being pulled in every direction. I believe that my family and I need to move and if we do i'd like to take mum with us but she'd have to go into a home.

I feel very torn about this. In some ways a home may be good because i can just spend time with mum and not have to do all the other thingsthat go with keeping her at home - shopping, sorting out staff, DIY, gardening etc. But on the other hand mum's carers are amazing and I know she'll get no better care.

If mum went into a nursing home would they then make all decisions about medication and feeding and things like that? I've been looking after that side of things for so long it would seem wrong for others to take over. i have a million other questions.

I just would like to hear anyone's opinions on all of this. Can a home be OK? Will i be able to find a truly caring and home environment for my mum?

Any advice would be good

K x
 

Canadian Joanne

Registered User
Apr 8, 2005
17,710
0
70
Toronto, Canada
I can't advise you about who would make decisions about your mother's meds and so on, because I'm in Canada.

But I can give you my opinion about whether a home can be good and whether you and your family should look to the future.

I think you should look to the future. My mother has been in care for over 8 years now and is at the stage of your mother, except that she's also in a wheelchair. My mother was diagnosed at 64 and I found that hard enough - to be diagnosed at 55 is even rougher. But she is well cared for where she is. We've had our moments in the past but a lot of that was due to my mother's aggression and violence. Her skin is in perfect condition, she eats well and seems happy.

You aren't in a panic, so you can thoroughly evaluate each home you visit. Make a list of your questions so you don't forget. Think about what you want for your mother.

You have yourself, your husband and especially your young children to think about.
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
. Can a home be OK? Will i be able to find a truly caring and home environment for my mum?

Hi, Katherine

The short answer is yes!

There are many good homes out there, but you have to be prepared to look at as many as possible to find the one that suits your needs.

Yes, they will look after diet, and administer medication prescribed by the GP. But they should do everything they can to follow the normal diet of the resident, adapting as necessary.

I do think you need to think of yourself and your family now. In this economic climate, if you and your husband can find better standard of living elsewhere, then you can't afford to turn it down.

One thing to be aware of, though, is that if you were moving toa different LA, there might be problems about funding for your mum. Check that out before you make any definite decisions.

Good luck, I hope you can find the beat solution for you all.
 

Helen33

Registered User
Jul 20, 2008
14,697
0
Hello Katherine

Although I haven't been down the care home route as yet and my husband isn't needing as much care as your mum, I wanted to respond mainly because of your title "feeling rubbish". It sounds to me that you have been doing a wonderful job of making sure that your mother's needs are met and you mentioned that the carers are wonderful with her:) This will all be down to you having organised this and I know what it is like trying to manage a care package however wonderful it is;) It can be very stressful at times.

Katherine your circumstances have changed in that you now have two little children who have to be prioritised. I doubt you can feel ecstatic because you need to make some changes but I do feel that you could feel really proud of yourself for all that you have done and all that you will continue to do. It is not as if you are abandoning your mother. You are considering finding her the best possible care under the current circumstances and I think that is wonderful. You need to make a definite decision about whether you are going to make these changes and once you've done that then you will have the hard work of finding just what is right for all of you in the circumstances that you are all now in.

I do wish you well and will look forward to following your story as to what you decide and how it all pans out for you.

Love
 

BeckyJan

Registered User
Nov 28, 2005
18,971
0
Derbyshire
Hello Katherine:

I guess that pre dementia your Mother would have wanted you to get the best out of your own life. Now that involves a husband and two children. As a Mother I want my children to achieve the best in their own lives and I have already told them when the time comes I will go to a care home, as long as standards are good.

I can say that to them as I have the experience of my husband's Nursing Home - and yes, there are good ones around. We do not know what area you are in - if you can declare this there may be more detailed advice. As Skye has said you need to check on LA funding if you are moving areas.

Please keep posting - we need to get you out of the 'rubbish' feeling!!!
Jan
 

katherine

Registered User
Sep 5, 2006
57
0
Hello those who replied and thank you for your encouragement. I do already feel more positive and not least because of what you've written. I think the decision we are making is the right one, but sometimes you also need support and affirmation that what you're doing is ok. This is a great place to get it.

I spoke to mum's CPN about all of this today. She's been with us in this since the beginning and has been totally supportive. She agreed that now is a good time to make the changes I'm thinking about and offered to help us in any way. Having her support means a lot.

I also saw mum today. She was smily and relaxed and I know that i'll do everything to make sure she stays like that wherever she lives.

Jan - we're hoping to move to the Bath area - so if anyone knows of any lovely small places there let me know.

Thanks again

Katherine
 

zoet

Registered User
Feb 28, 2008
705
0
55
Macclesfield, Cheshire
Hi Katherine. Having worked in homes a long time I can assure you that there are some very good ones but I would like to offer a little advice on choosing one and what to expect if I may.

Firstly, posh decor, and charming appearances are not necessarily an indication of a good home. I have worked in homes where the environment was decidedly tatty, but the staff were absolutely fabulous, which meant that residents were cherished, content and as healthy as possible.
Some things that are very important to the people actually living in a home are:

staff to client ratio;
food;
stimulation;
continuity;
calm and nurturing environment;
gentle and happy staff;
inclusion of family and friends.

You should ask questions about all these and look for proof on your visit. Make several visits, all at different times of the day, and different days of the week. Check sickness levels and agency staffing levels: a high level of either is an indication of lack of continuity and stress, which greatly affects residents.
Make sure that there is an activity programme and make sure that it actually happens!
Ask about choice and how it is maximised, in food, clothing, activity, sleep/getting up etc.

Medication is delivered at set times according to pharmaceutical and GP instruction. You dont get a choice in that. It is recorded on what is called a MARR sheet, so you can ask at a later stage to see that if you are unsure about the administration of meds for your mum.

Food is a huge aspect for clients as much pleasure is derived from meals. Choices should always be available; ask to see the menus. Where you eat too can be important, and how much supervision at mealtimes is a very valid question.

Bringing your own furniture is sometimes allowed, and you will want to know about security too: are the rooms locked during the day? Can clients have a key? Can family come and go? Is the front door alarmed and monitored?

Keeping you involved should be a high priority. Try to think about every area of your mums life: how she likes to live it and what needs she has. If you can, make a little list (care plan) of her daily activities and what preferences and needs she has. Good homes will welcome this information and it helps to ensure your mums routines are as close to normal.

Be flexible; living in a home is very different to living in your own home, and a certain amount of flexibility is required, as obviously there are many people to provide care for. This means compromise but never compromise on the standard of care. That should remain the same as she has now, and if not you need to know about the complaints proceedure.

On your visit talk to different members of staff, including kitchen or cleaning staff if you can. If you get a chance to talk to any visitors/family of others at the home do so.

Read the latest Inspection Reports on the home;they should be available both online and at the home.

Look at what equipment the home has for things such as bathing, moving and handling.

Ask what the policy is regarding emergencies, and falls/illness etc.
Indicate to what level you wish to be involved in decisions; do you want to know if your mum has a cold or only the bigger things?
How are appointments outside the home dealt with? Is there transport and enough staff to escort your mum? Will staff keep track of appointments and follow up the after care? Do you want to know about changes in medication and have some input?


There is so much to think about including the practical things that it can be overwhelming. Make a list of questions to ask. No question is silly, and whomever shows you around needs to allow you plenty of time to ask them. Dont be fobbed off by vague answers:LOOK for written or aparant evidence of the answers. Look at the other clients. Do they look clean, happy,integrated,well dressed with jewellry/hair done/shaven? Do they look lonely or social? Is anyone calling for staffs' attention and how long does it take to get it?

Almost certainly you will get a sense of the atmosphere in a home as you walk around it. Trust your instincts.
Take plenty of time to choose, and do not be afraid to change your mind. Take your mum when the decision is nearly made and ask if she can spend a day or two or even a night there.
I wish you good luck and hope this helps as you make your difficult decisions. xx Zoe
 

sad nell

Registered User
Mar 21, 2008
3,190
0
bradford west yorkshire
Thanks for that Zoe, you made some very usefull comments, and i totally agree that the 5 star hotel looking places do not always offer the best caring enviroment, the place where trev is in for respite is council run, spotlessly clean but cosy and has a good atmosphere created by excellent staff and i trust them to take care of my man
 

concernedwife

Registered User
Mar 30, 2009
14
0
"feeling rubbish"

Hi Katherine

My husband (who is 61) was diagnosed with Alzheimer's 5 years ago. His deterioration in the past 6 months or so has been rapid, so much so that I can no longer look after him.

I have very recently made the decision that he should go into a care home (see my post today "Concernedwife").

The past few months have been extemely painful for me, mainly the guilt and anxiety because I know that I have no alternative but to let him go, in order to avoid a complete mental breakdown. I love him so much but this situation cannot continue. There are lots of good care homes out there. Please trust your judgement and look for somewhere appropriate to her needs. If you don't you will destroy yourself and probably your family.

You take care and lots of love.;)
 

katherine

Registered User
Sep 5, 2006
57
0
Hello again

Thanks Zoet for that brilliant advice.

And thank you 'concerned wife' for the encouragement. This illness makes people have to make hard and painful decisions. I hope you start to feel better about your situation soon. The important thing I suppose is to always make any decisions from the heart - and then it has to be right. You've obviously done that. I'm going to read your thread now...

loads of love

katherine x