Time for a home?

[Aud]

Hi there

When is the right time for my mum to go into a home. My dad is a true star and is holding onto mum for as long as he can but the rest of us in the family (sister, brother and me) think she should be in a home now. My mum - i think - is nearing the late stages of alzheimers. She's been diagnosed for at least 6 years now and she is sometimes totally out of control.

She is wetting nearly every night, hitting my dad if he tries to change her. In fact hitting me( I live closer to my parents where my bro and sis live 250 miles away) or dad for any reason that she fancies. She refuses baths she hits the carers she's filthy at times. She puts her daily clothes over wet night clothes etc. It never ends!!

I undersatnd dads plight that he loves her no matter what and that he can't give up 50+ years of marriage "just like that!", but I keep worrying about his sanity and health. I used to call him and he seemed so pleased and cheery, now he just answers "hi". How can I make him see that he wouldn't be giving up on his marriage and he has done the best he can. Maybe i'm wrong maybe there's some more mileage in this yet.

Another thing is that no home will ever be good enough. She has been in for respite but there's no stimulation, they just sit there and watch Daniel o Donnell all day!

Is there a register of homes that are particulalrly focused to Alzheimers patients?

Aud

 

[Canadian Joanne]

Yes, it's time

Aud, I am always so incredibly in awe of the spouses. They will hang on forever, keeping their spouse at home even to the detriment of their own health. And that does happen.

It really sounds like it's time to me. I realize that your father probably won't want to listen to his children telling him what to do. Is it possible for you 3 siblings and your dad to sit down and discuss this together? I realize your siblings are 250 miles away but I think a family meeting is imperative. If all 3 of you gently but firmly tell your dad it's time, perhaps he will agree. Of course he can't give up 50+ years of marriage. If he won't listen to you, how about a professional? Doctor, nurse, social worker? Old friends whose opinion he values? It's going to be difficult but once your mother is in a home (and hopefully you'll find a really nice one close to your Dad's home), he can then go and spend all day with her if he likes. He'll enjoy the time with her more and it will be more productive for both of them. At least, the homes here in Ontario allow family visits any time of the day from about 8:00 am to about 8:00 pm. I hope it's the same in the UK.

Work on it and keep us informed.

Joanne

 

[Brucie]

If he is like I was, he'll already know it is time. But he won't accept it. It always takes that last few steps beyond 'too much' to know you are there. Often, a period in hospital or in assessment will bring things to a head.

It is a process of attrition though, and he will agree to do something when the time is right for him.

Okay, do get together and talk with him about it.... plant some seeds of realisation.

The key argument may well be that though he is doing his best, others elsewhere will be able to make her safer, healthier and in a better state for him to be able to visit her and wring the utmost value from their time together. He will be most concerned for her well-being and it is that which may tilt the balance.

Good luck!

P.S. having a partner live in a home doesn't mean you are giving up on your marriage. Each visit can be an occasion - something to look forward to, taking flowers, chocolates, etc. I have found it like being continually 'courting' someone for the first time, almost.

If the home is right, the staff become honorary family.

 

[Cabby]

Support for Aud's DAD

If its any help I am nearly your Dad, Ann is getting to the stage where I somtimes despair but can't seem to or want to give up on her, we too have been together for nearly 50 years,brought up five kids and yes they are so supportive, especially my eldest who lives very close and dearly would like me to get Ann placed somewhere nice so I'm not so stressed or feel suicidal. We have looked at a few places where Ann can be placed but unfortunately the one we would like her to go to has a long waiting list, she does go for the odd week now and again and seems reasonably happy there,however although I know in my heart she would be ok I dread the day when she finally goes. I think the argument is that if it was me I know Ann would not let me go until I was completly out of it (whatever that is) and I somewhat relucantly use that to help me get through the day to day turmoil that is my life with Ann.
Lifes a bitch sometimes but I still love her very much,I do hope your Dad can let her go Aud very soon, God bless although he isn't much help either!!

 

[KarenC]

Aud and Cabby,

This isn't quite the same thing, but we had a 100-year-old grandma in our family who had been living with her eighty-something niece. The grandma did not have dementia, but was getting to need more and more help -- e.g., wetting the bed and needing to be changed multiple times during the night. The niece was just getting worn out; after all, she was no spring chicken. The family finally decided that grandma had to go to a nursing home, at least "temporarily to give the niece a rest." The home was near where they had been living, and the niece went and visited every day and so they still got to enjoy each other's company. And the grandma actually perked up and did better -- she gained weight on the more varied diet at the home, and was getting more kinds of stimulation than she could from the niece who had been worn out just doing the physical care-taking.

Dementia makes it more complicated and difficult, of course, but some of the same may apply.

Best wishes to you both, in a very tough situation.

Karen

 

[Aud]

Aud, I am always so incredibly in awe of the spouses. They will hang on forever, keeping their spouse at home even to the detriment of their own health. And that does happen.

It really sounds like it's time to me. I realize that your father probably won't want to listen to his children telling him what to do. Is it possible for you 3 siblings and your dad to sit down and discuss this together? I realize your siblings are 250 miles away but I think a family meeting is imperative. If all 3 of you gently but firmly tell your dad it's time, perhaps he will agree. Of course he can't give up 50+ years of marriage. If he won't listen to you, how about a professional? Doctor, nurse, social worker? Old friends whose opinion he values? It's going to be difficult but once your mother is in a home (and hopefully you'll find a really nice one close to your Dad's home), he can then go and spend all day with her if he likes. He'll enjoy the time with her more and it will be more productive for both of them. At least, the homes here in Ontario allow family visits any time of the day from about 8:00 am to about 8:00 pm. I hope it's the same in the UK.

Work on it and keep us informed.

Joanne

Thanks for your encouraging words. It is very difficult for all of us to sit down together especailly without mum being there. Dad has her constantly in sight. We have kind of si=aid it would be in his and mums best interest to find a home but to be honest we don't even know how to go about it. It's probably different out there.

Also a frind of mine who has studied the disease has told me that putting people into a home and how they cope is all about timing for them. My worry is that it might be too late and she won't cope and the inevitable will happen very quickly! therefore dad will feel that it was his fault. Tricky one!

But it's really good to know there's people out there who so understand where we're coming from.

Thanks Aud

 

[Brucie]

At Jan's home I can visit any time, day or night.

It is a reassurance for a spouse to be able to go in after midnight and see her peacefully sleeping. When asleep, her body relaxes and all the ravages of dementia are shed and she looks as she always did.

Although it is worth his discussing his situation with family, friends and professionals, to be truthful, any advice is likely to be taken, and stored until he feels within himself that he can bear to have his wife away from him.

As people often say [and I have amended it for the context], 'you choose your husband or wife, you are stuck with your relatives'. No disrespect to [some] relatives, but when you take those marriage vows, and when you take them seriously, you accept responsibility for the other person entirely. Many won't understand it, but it is a bond that is even closer that blood. Thus it is very very difficult to break that bond. The hardest decision one can ever make.

 

[Aud]

If he is like I was, he'll already know it is time. But he won't accept it. It always takes that last few steps beyond 'too much' to know you are there. Often, a period in hospital or in assessment will bring things to a head.

It is a process of attrition though, and he will agree to do something when the time is right for him.

Okay, do get together and talk with him about it.... plant some seeds of realisation.

The key argument may well be that though he is doing his best, others elsewhere will be able to make her safer, healthier and in a better state for him to be able to visit her and wring the utmost value from their time together. He will be most concerned for her well-being and it is that which may tilt the balance.

Good luck!

P.S. having a partner live in a home doesn't mean you are giving up on your marriage. Each visit can be an occasion - something to look forward to, taking flowers, chocolates, etc. I have found it like being continually 'courting' someone for the first time, almost.

If the home is right, the staff become honorary family.

Thanks Brucie, it makes so much sense what your saying.

I think your spot on he does know its time. I wonder if he's worried about being lonely though. We have tried to sya to him that unless he wants to be, he will never need to be alone, that's why we moved up here three years ago to be close to him as well as mum.

She's actually had a few spells in hospital as she started fitting, and the staff there said she should be in a home. Social services are saying she should be in a home, EVERYBODY's saying it. It's soooooo frustrating! sorry for that, it's just a crazy situation.

I'm worried they'll section her and send her to any old place, can they do that?


Aud

 

[Brucie]

If she is having fits, then that may be the thing that makes him realise that she would be better with the regime of a care home. Jan often has fits and, while I experienced her having them at home, they are becoming worse, and I know the home cares for her better after these than I ever could. They have doctors on call who know the complications of dementia, whereas most GPs don't.

Regarding being sectioned - I'm not expert on this in any way - I would have thought they would section a person only if their behaviour became either a danger to others, or a major danger to themselves. Just being very unwell is not a reason to section someone.

There is a benefit of checking out homes beforehand though. If one day it is necessary as an emergency to move her to a home, that might be done to a home that you might not like. Better to forestall that by identifying one now and when you find one that has a place, to use that information to explain to him that it would be sensible for him to check it out.

Its never going to be easy!

 

[daughter]

This was something my Mum came to realise - that she might become ill herself, with all the stress and Dad's aggression, and then Dad would be put 'just anywhere' because she couldn't care for him.

My sister and I made an appoinment at a local home, 'just for a visit', so Mum could see what it was like before things reached crisis point. We were very lucky because it is very close and Mum visits every afternoon - continuing her care of Dad at the home. The staff are lovely and no Daniel o'donnell!

Mum was also dreading the day -

The hardest decision one can ever make.

and I won't pretend that she doesn't still wish it was different but (and I'm surprised at this myself) we have had some really good visits.

I can understand the bond between husband & wife but also know what it's like as a daughter watching both your parents go through this and not knowing when to try and step in without being a bully or interfering. Gently does it...

Good luck Aud.

P.S. a quick search on Google found these sites (I haven't checked if they are state-run or private but I hope they may help):

http://www.bettercaring.co.uk/

http://www.carehome.co.uk/care_search.cfm

http://ukcare.net/public/

 

[Sandy]

Hi Aud,

My husband and I have been looking into care homes for my father-in-law(84) for the past three months or so. Currently, he is being cared for by my mother-in-law(80) at home. There is no urgent need at the moment for a care home, but his health is not good and things can change quickly.

Our family decided it was better to start looking and see what was out there before a crisis arises. This has been a good decision, although it is hard to start with, because homes do vary quite a lot in terms of provision and staff (some are much better than others). Another important factor is geography - we wanted to find some place near to my mother-in-law.

As we found, there were only two care homes in their town (Colchester - not a tiny place) licensed to take new residents diagnosed with dementia. Both had waiting lists, which my father-in-law is now on. Most homes have no problem with putting a name on the waiting list if the place is not actually wanted at the time.

Perhaps the best resource for investigating care homes is the web site of the Comission for Social Care Inspection http://www.csci.org.uk/ , they are the official body responsible for care home inspection. If you use their Advanced Care Home Search you can specify the type of home (nursing or no nursing), , the type of care (dementia) and then just enter the post code and the search radius in miles.

This will give you a list of homes that meet your criteria. You can then read their inspection reports online and then contact them to arrange a visit if you like. One slight snag with the search results, they may include homes which are licensed to care for only specific, named persons with dementia and are not able to take new admissions. That distinction only becomes clear when you read the inspection reports.

The Alzheimer's Society also has a Fact Sheet on this topic:

http://www.alzheimers.org.uk/Caring...ntial_and_nursing_care/info_selectingcare.htm

Take care,

Sandy

 

[Aud]

If its any help I am nearly your Dad, Ann is getting to the stage where I somtimes despair but can't seem to or want to give up on her, we too have been together for nearly 50 years,brought up five kids and yes they are so supportive, especially my eldest who lives very close and dearly would like me to get Ann placed somewhere nice so I'm not so stressed or feel suicidal. We have looked at a few places where Ann can be placed but unfortunately the one we would like her to go to has a long waiting list, she does go for the odd week now and again and seems reasonably happy there,however although I know in my heart she would be ok I dread the day when she finally goes. I think the argument is that if it was me I know Ann would not let me go until I was completly out of it (whatever that is) and I somewhat relucantly use that to help me get through the day to day turmoil that is my life with Ann.
Lifes a bitch sometimes but I still love her very much,I do hope your Dad can let her go Aud very soon, God bless although he isn't much help either!!

Cabby, I'm really sorry to hear that you are going through a similar situation to my dad. Actually one of the main things that keeps him going is knowing that God IS helping him. So keep believing.

The love you have for your wife oozes out between the words that you write and has helped me to undersatnd my dad even more. Keep going you are an amazing person.

Thanks Aud

 

[Aud]

Aud and Cabby,

This isn't quite the same thing, but we had a 100-year-old grandma in our family who had been living with her eighty-something niece. The grandma did not have dementia, but was getting to need more and more help -- e.g., wetting the bed and needing to be changed multiple times during the night. The niece was just getting worn out; after all, she was no spring chicken. The family finally decided that grandma had to go to a nursing home, at least "temporarily to give the niece a rest." The home was near where they had been living, and the niece went and visited every day and so they still got to enjoy each other's company. And the grandma actually perked up and did better -- she gained weight on the more varied diet at the home, and was getting more kinds of stimulation than she could from the niece who had been worn out just doing the physical care-taking.

Dementia makes it more complicated and difficult, of course, but some of the same may apply.

Best wishes to you both, in a very tough situation.

Karen

Karen you ae so right, my dad also is so busy looking after her welfare I doubt that he's enjoying being with her. It makes so much sense for her to be looked after in a home and dad would be able to spend some quality time with her as well as all the rest of us.

 

[Sheila]

Dear Aud, as Brucie says, your Dad most likely knows already, jsut cant bring himself to do it. Sending him and all of you a great big hug for being so wonderful in the care of your Mum. Hope things improve for you soon, love She. XX

 

[Charlie]

Hi Aud,

It is a hard and almost impossible decision. I understand how you dad feels and it's a decision that must be causing him great agony.

I promising myself to get prepared for the day that dad needs to go into care, that is, when mum finally breaks down and can't cope any longer. But, kept putting it off, hoping that it will turn out OK. Until recently, mum would not even discuss the option. All I can recommend is getting as much advice as possible and being prepared so you can at least help your dad to make some informed choices. The worse situation is when you hit a crisis and just don't have time to make informed decisions. That's why I'm glad I found the society website and stacks of information on how to get practical help.

Unfortunately the emotional bits are a bit harder to sort out and can only be really sorted ourselves along with a large dose of old father time.

Cheers
Charlie....