BS: Supporting elderly relative-advice pls

Subject: BS: Supporting elderly relative-advice pls
From: nutty
Date: 26 Nov 05 - 03:43 PM

Four weeks ago my 93 year old mother had a heart attack. It happened in the night, she fell out of bed, hitting her head and lay on the floor until her carer called the police to break in when she couldn't get into the house in the morning.
Mam had the house locked up like Fort Knox and had taken off her Home Call Alarm as she didn't like sleeping with it on.

She was taken to hospital and once stabalised she was transfered to a rehab unit at a local cottage hospital.

The problem now is that she is determined to go home. She is convinced she can cope and is refusing to listen to anyone.

My sister and I know that there is no way that she will be able to do the things that she was able to do before her fall and although the doctor is not in favour, it seems that there is little he can do if she persists in demanding that she gets support in the home situation.

Given all the help that Social Services can provide she will still need a substantial amount of help. Her mobility is poor, her memory erratic and her heart condition is unlikely to improve. She also has a number of other conditions for which she has to take regular medication.

Another major factor is that the house has no central heating and her arthritis is making it difficult for her to control her gas fire.

I am feeling really deprssed and negative about this .... has anyone out there solved similar problems. All advice will be gratefully received.

Subject: RE: BS: Supporting elderly relative-advice pls
From: John MacKenzie
Date: 26 Nov 05 - 04:12 PM

When a similar situation happened to my friend, they would not release her Mother until social services had inspected the house and arranged the help, from home helps to health visitors. I can only suggest that you speak to social services and share your worries with them.
Giok

Subject: RE: BS: Supporting elderly relative-advice pls
From: Sorcha
Date: 26 Nov 05 - 04:17 PM

Yup. What Giok said. Family Services too, if neccessary. Maybe an attorney......

Subject: RE: BS: Supporting elderly relative-advice pls
From: wysiwyg
Date: 26 Nov 05 - 04:31 PM

We were the support people for Hardi's mother when she was faced with becoming the primary caregiver for Hardi's dad, after a series of strokes and through a number of ongoing medical crises including heart attacks and a fall leading to a broken hip. The broken hip ended his homecare option because he'd declined the physical therapy after the stroke, and he could not rehab the hip after it broke.

We also pastor elders going through this as well as their adult children and grandchildren.

And, I "sit with" a dear friend in his late 80's, post-stroke, so his wife remembers to get out. We have a grand time; as the wife's own mental status deteriorates with Alzheimers, we're building me into their family network and their assisted-living regime. Right now, in addition to providing loving and challenging companionship, I'm the stroke-translator and the fixer of puzzling problems. :~)

So these are the xperiences that form the background of the following my reflections.... and I realize that the community we pastor in now, where people are tough and live a long, long time, has taught us whjat we moghjt never have learend had we stayed in suburbia. I've paid careful attention to how people here care for one another through all of life's passages..... we're surrounded by wise examples.

The painful fact that is inescapable is that the tenacity to want to stay at home far outstrips nearly all disabled elders' ability to actually manage the reality of doing it. It is very, very hard for all concerned to sort out the difference between an elder expressing sorrow and anger at life itself's hard turns, from their actual ability and desire to live at home.

Another painful fact is that in our modern societies, we lack good solutions to this part of life. It's a no-win situation for all involved, and it sucks. It REALLY sucks, bigtime, and there isn't any way around that.

The best that can usually be accomplished is to put the time and energy that family and friends WOULD have put into helping with home care, into supportive friendship after independence is no longer an option-- to avoid being the actual care-GIVER and become the CARER.

There's no avoiding how painful it is to have to hear the complaints and blame about the decisions you or others have made in their behalf, as the elder seeks to make sense of whatever new realities are necessary... but it IS a normal part of life as we live it in our present culture, and we each bear that burden of caring for elders, in our turn.

So what is left, in the midst of these really sh*tty realities, is to make the best decisions you can with the most love and awareness of every aspect of it, that you can muster-- to face that head-on and do what you can, with what you have to work with-- and to keep loving the dickens out of these dear, burnished souls, as they are, day by day. To love them not for who they have been and wish they still were, but to cherish WITH THEM their memories of those earlier days they hoped would go on much longer, and to love them as they now are. They feel so unlovable-- they feel so "less than" they want to be. But if you just love'em, that helps. Not as much as we would all like-- we'd all like to make everything all better, and we can't.

It's hard to strike a balance but you must: you must keep to your own existing commitments and take care of yourself, in order to have anything to give either as caregiver or as visiting loved one. No one who has ever been told this can hear it, at first... but you will hear the same wise guidnace from people who have been through it and from professionals invovled with you now. But the situation will teach it to you....

You learn, or you die by slow degrees, to spend the time with your elder that you can-- and leave promptly and cheerfully with no apology. You learn to hug them when they are railing at you most hurtfully. You learn to individualize your care for them to the person they are, and the needs they have.

One thing many people fail to grasp is how much mental improvement occurs when there is mental stimulation. Old photos are the BEST. Making easy and brief but meaningful and increaingly complex activities part of every interaction helps you and your loved elder stay as sharp as they can be, and more aware of and appreciative of the help they now need.

Something to keep in mind through this is that our elders have gone before us to play this role, in their turn, for their parents and their just-older peers. They just need a lot of patience as they make the transition from helper to the helped-- it's a bitter pill to swallow.

And we'll have our turn to be helped, eventually, too. It all goes around and around-- it's life.

All the best,

~Susan

Subject: RE: BS: Supporting elderly relative-advice pls
From: Jeanie
Date: 27 Nov 05 - 05:41 AM

Wise words, and very well put, Susan. I went throught the same worries and concerns with my own mother, Nutty, and I know what it's like to have this great mountain of responsibility and of unknown future ahead. I would echo what Giok said: get in touch with Social Services straight away, long before there is any question of your mother being discharged or moved from hospital. They cannot send anyone back to their home without doing a full assessment, which includes visiting and studying their home situation. I can only speak from my own experience here, but in our area Social Services operate an intensive "home from hospital" service, which decreases as the person recuperates and becomes more able. It may be hard to tell at this point just what your mother is going to be able and unable to do. Believe me, no-one is going to suddenly send her off home in an ambulance (I had nightmares of that happening).

Easier said than done, I know, but try not to worry about as yet unknown outcomes. Voice your concerns (firmly and frequently) to the hospital staff and to social services. Step by step, the picture *will* become clearer.

Thinking of you and your mum,
With love,
- jeanie (PM me any time you want to talk or let off steam) xx

Subject: RE: BS: Supporting elderly relative-advice pls
From: Morticia
Date: 27 Nov 05 - 08:20 AM

The rehab unit usually has social workers who, in conjunction with the OT, physio etc, will assess and manage the process of getting her home, if and only if, she is decided to have 'capacity' to make that decision and it can be done safely. Since this is what I actually do for a living, feel free to PM me for advice.....services do vary from LA to LA but the principles are the same.

Subject: RE: BS: Supporting elderly relative-advice pls
From: artbrooks
Date: 27 Nov 05 - 08:41 AM

Herself is an occupational therapist who does this regularly. As has already been said very well by others, get involved early with the people at the hospital. Make sure that they do a home evaluation (what Jenn does) well before she is ready for release, and be prepared for a report that she cannot return home without 24x7 professional in-home care. You then need to make that terrible decision between what she wants to do and what is best for her, realizing that the nurturing relationships between you have been reversed. You may need to go so far as to have a mental health assessment done and be declared her legal guardian. Your real choice may be between placing her in a nursing care or assisted living facility of some kind or bringing her into your own home for whatever time she has left.

Jenn and her sister faced this choice some ten years or so ago when their mother could not longer live alone. Their decision was not easy, but it had to be made.

Subject: RE: BS: Supporting elderly relative-advice pls
From: Georgiansilver
Date: 27 Nov 05 - 08:50 AM

A difficult situation which is only hightened by the attempts to preserve the dignity and self respect of the person. I personally feel that our elders should be given the chance to do what they want.....as long as they are in a "sound enough frame of mind" to make the decision. All the possible difficulties should be presented to them but the ultimate decision should be theirs. We did not like it when our parents told us what to do in our teens...neither will they like being told what to do in their twilight years.
If they make the firm decision to go home then it is their right and should be upheld....all support systems available in place of course.
We feel we have to take such responsibility for our elderly parents but sometimes we are forced to bow to their wishes...possibly at their cost.
There is no easy answer....but...I would suggest you follow your heart and the counsel of Doctors/Social workers and 'allow' things to take their course without heavy interference....not easy to do with someone you are so close to.
Best wishes, Mike.

Subject: RE: BS: Supporting elderly relative-advice pls
From: Jerry Rasmussen
Date: 27 Nov 05 - 08:55 AM

My Mother who is almost 99 had two heart attacks after my wife and I visited here last summer. She had been living in her own apartment in a retirement complext that includes everything from free-standing duplexes to health care. She was put in health care, and was determined to recover enough to go back to her apartment. I don't know who put the Kabosh on it, but someone supervised her when she went back on a visit and concluded that she was not capable of living on her own any more, and wouldn't allow it. I really feel for you, nutty. I am a thousand miles away from home (there's a song in there) so my two older sisters have had to deal with the situation. In my case, we were blessed because my Mother is still as clear-minded as she was when she was a young woman and she realized that she couldn't do it safely. She's since moved into a room she likes in Assisted Living, feels safe and secure, loves the center she lives in and has regained more strength so that she doesn't feel so helpless.

We have been blessed because my Mom's mind is still clear. A man across the street had Alzheimers and became impossible to care for at home. He drove his wife to destraction, and she had a weak heart. A week after she finally put him into a nursing home for people with Alzheimers, with the ugliest, angriest accusations, she had a heart attack and died. There is no way to quantify suffering, or say that cancer is worse than Alzheimers, or any other of the major diseases. But, Alzheimers (not saying that's what your Mother has, nutty) or a hardening of the mind and refusal to cooperate is terrible. I have a close friend whose wife is showing all the signs of irrational behavior and is becoming near-impossilbe to take care of. It's tearing him apart, and my heart goes out to him as it does to you. The only real "solution" there seems to be is to get some outside, third-party who has the authority to make the decision you cannot.

Jerry

Subject: RE: BS: Supporting elderly relative-advice pls
From: Bobert
Date: 27 Nov 05 - 09:21 AM

Well, when my grand-mother was in he early 90's she also got to a point where she was unable to care fir herself in her apartment and me being the former social worker, my parents asked for my advice...

...which was to have a social worker be the fall guy...

Your mom just wants to have some control of her life and maybe it's best for the socail worker to say, "Look, Mrs. ___________, we have inspected your house and it just no longer is fir to meet your ful;l time needs. Lets loot at some alternatives here."

One may be to keep mom's old house without the heat and let her "visit" there during the day time... But be sure to have several ideas out there so that mom will be part of the equation..

Now if she her reasoning skills have deteriorated too far then maybe fewer options or options that may seem different to her in presentation yet are very similar under the sugar coating...

Good luck. This is a toughie...

Bobert

Subject: RE: BS: Supporting elderly relative-advice pls
From: Deckman
Date: 27 Nov 05 - 10:25 AM

I went through a very simiar situation with both of my parents. This struggle, and it is a huge struggle, lasted close to five years.

There has been some very good advice posted here. I would only add one thing: build your OWN support group NOW. I'm sure you are becomming aware the strain, in many different ways, that you and your will be undertaking. Friends can help immensly. Best wishes, Bob

Subject: RE: BS: Supporting elderly relative-advice pls
From: LilyFestre
Date: 27 Nov 05 - 10:46 AM

When my Dad's mother, my Nana, could no longer take care of herself, the responsiblilty of what to do fell on my shoulders as the rest of the family is gone, dead. My grandmother was in the hospital and wanted to go home. We all knew that going home was something that she definately couldn't handle anymore by herself. She was adament and I didn't want to put her somewhere she didn't want to go. So, with nurses coming in and out throughout the day, she went home. I lived right next door to her so I could help too. There were nurses there all day, every day except between the hours of 5:00pm-8:00pm. Nana said she was fine with this. Pretty soon, I'd start getting calls around 5:15 or so. Could you come over and bring me a glass of cranberry juice? Of course I could and I did. I stayed with her until about 7:30 or so and she'd tell me she was getting tired and I didn't need to stay, she was ok and I would leave...both of us knowing that a nurse would soon be there to help her up the stairs to her bedroom. She didn't want to ask for help or to say to me that she didn't want to be alone so I didn't ever do anything to make it seem that way. We'd vist about the day, play along with a game show on television or I'd write out her bills or whatever. It didn't take long before she got tired of all the people in and out of her house and she talked to her doctor about living in a nearby nursing home. It was her decision and she still felt as though she had some control over her life. She lived there for a little over a year before she died. I believe that she was happy while she was there and I think that because it was her decision, it made all the difference in the world.

I know this isn't possible for lots of people but it is how it worked out for my family. I was incredibly fortunate that the nursing home was less than 3 blocks from my home and I saw here nearly every day (I walked by her window everyday on my way to and from work). I was a pain in the ass to the staff when necessary and saw to it that my Nana (and her roommate too) were well cared for.

About being angry and cranky....absolutely....be prepared for it. While I agree with Susan that you just keep on loving them and hug them tight, sometimes, for my own sanity, I would just leave. I would say something like: Okay Nana, it was good to see you today. I'll be back tomorrow. Or sometimes, when she was REALLY nasty, I'd say something like: Nana, you are being really hurtful and I'm going to go home now. I'll be back tomorrow. I love you. And I did go....once I left her room, I cried myself right out the front door of the nursing home and up the street to my house. It was SO HARD for me to do, but Susan is right, there comes a point in time when you realize that you DO have to take care of yourself.

I don't envy your position. Be gentle with your Mom and with yourself...

Love to you,

Michelle

Subject: RE: BS: Supporting elderly relative-advice pls
From: nutty
Date: 27 Nov 05 - 11:42 AM

I've just got back from another visit and reading all your replies has made me feel so much better .... thank-you all so much.

I know that the hard time is just beginning. She is so keyed up about the assessment visit home I hope that going back to the hospital afterwards is not going to be too much of a disappointment for her.

We'll just have to take it one day at a time.

Thanx again
hazel

Subject: RE: BS: Supporting elderly relative-advice pls
From: wysiwyg
Date: 27 Nov 05 - 12:40 PM

I don't know a thing about UK social services, Hazel, but I do know my way around people's feelings on this issue, a bit... and I have other elders here, who I can ask about things. If I can help in any way, or help spot an insight about your mum's perspective, please feel free to PM.

~S~

Subject: RE: BS: Supporting elderly relative-advice pls
From: Kaleea
Date: 27 Nov 05 - 01:55 PM

nutty-Amen to the above!

   I had been dreading that moment for years! My older brother & my father were in total denial of my father's needs, yet as a former activities director in nursing homes, I knew that Daddy should not be living alone. My brother was "too busy" and I'm disabled & could not take care of him or his housework. The Drs had all suggested to him that he go to "assisted living." He needed total care-not assisted living. When Daddy was in the hospital, I spoke frankly with the social worker-who had the power to NOT allow him to go home. She spoke to the Drs & made them aware of the situation. They all worked with me to find a nursing home, inform my Daddy that "they" couldn't let him go back to living alone because "they" knew he should be where there were lots of good people to socialize with, and he wouldn't have to worry about the housework anymore because the workers would take care of it all for him. They did NOT release him from the hospital until we had an approved (by myself & the social worker) nursing home.
Yes, he was angry at first, but he knew it was inevitable & after he was there, he realized that it was much easier. Living alone is hard for an elderly person-especially when you love people & are in too much pain to take care of your basic needs. He loves having people to talk to everyday all day! He has people to get him into his wheelchair & out-a herculean task otherwise.
When we stop to consider the day-to-day tasks which are nearly impossible for those with limited abilities, if we care about the person we cannot allow them to be in the situation of not eating because they don't feel well enough to cook, or not taking their medication because they don't remember if they took it or they don't feel well enough to get up & get it--or to go to the drug store to get it, or the Dr. for refills. My father was in too much pain to get out of bed & get himself to the door for his meals on wheels.
Placement in a care home is the loving way of seeing to our loved one's needs! Give your mother a few days to adjust, then visit as frequently as you like. You can go at different times of the day to get a good understand of the activities there so you will know what your loved one is doing. You can have a phone installed and call to chat, as well as encouraging family & friends to call, also. Encourage them to send mail, too--not just around birthday & holidays.
I also make certain to thank the workers for taking care of my father-something they don't hear much. You will sleep better at night. I know have.

Subject: RE: BS: Supporting elderly relative-advice pls
From: GUEST,DB
Date: 28 Nov 05 - 05:55 AM

My Mum died in 2001 and my Dad, who was 10 years older than her, was left on his own. I was living 150 miles away and in a full-time job. My brothers were in the same area as my Dad and did their very best to help him, and gave him much support, but were going through all sorts of problems themselves.
The biggest problem was communicating with the relative authorities who, frankly, were not very helpful. My Dad also didn't want to give up his independence but couldn't cope - at all; he had poor mobility, was incontinent and allowed the dog (which he couldn't care for) to crap all over the house. With his apparent agreement we made several appointments for Social Services to go round and assess his situation - he would always contrive to be out on his little electric tricycle thingy on these occasions. Social Services acted as though such a situation had never occurred before, ever, in the history of the Universe!
Eventually, my Dad collapsed and was taken into hospital. Whilst in hospital he became seriously delusional. I lost count of the times that I talked to the hospital authorities who either denied that there was anything wrong with him or gave me a variety of different stories (I never got to speak to the same person twice - and none of these people appeared to have even met any of the others).
We did, eventually, get to speak to the hospital Social Worker who made it very clear that his main priority was to get my Dad out of the hospital and into a nursing home. To cut a long story short, my brother eventually got power of attorney, sold my Dad's house and got him into a nursing home. Here my Dad began to recover, was warm, clean and well fed and had plenty of people to talk to. Unfortunately, after a couple of months, he caught a chest infection, which turned to pneumonia, and he was back in hospital. The whole nightmare of evasion and poor communications stared again. After a few weeks my Dad died.
As you can probably tell, I'm still very angry about this. The attitude of the authorities seems to be that relatives have no rights to any information or advice - only obligations to provide money for the elderly relatives care.

Subject: RE: BS: Supporting elderly relative-advice pls
From: Rasener
Date: 28 Nov 05 - 07:16 AM

My parents who are both 89 are now in a home. One is under nursing $care, the other residential. The home is about 20 miles from wher I live.
Before this they lived in B'ham uk which was 120 miles away. They lived in a warden controlled flat.
Scenario
Mother unable to walk and confined to wheelchair and adjusting chair which had become her bed.
Father who was pretty healthy, but could no longer deal with my mother, but wouldn't admit it.
He had allowed my mother to become cocooned in the lounge of the flat and she no longer saw anybody. We (the children)
I got a call to say that my father had collapsed and had been taken to hospital. My motehr was on her own and unable to look after herself.
I had to rush down to B'ham.
Long and short of it was that I had to reluctantly make the decision that my mother needed to go into nursing care.
Thats when the trouble started.
My father coudn't handle it on his own, and I was inundated everyday with calls from him. It became unbearable.
I decided that it was a human rights issue and that my fathere should be in the same home together with my mother. They had been married for 65 years and had always lived together.
Social Services reviewed my father and insisted he was suitable yet for residential care. The battle had started. Every route I tried to go with social services were just ignored. In the meantime my fathers health was being severly affected by being apart. The whole situation was becoming unberable for everybody.
In the end after an exhaustive search on the Internet, I found a brilliant solicitor who dealt with human rights for people in my parents situation.
Within a week of the solicitors issuing a letter to social services concerning the human rights of my parents, I was stunned to get a call from a manager of Social Services who was literally sucking up to me.
Within 6 weeks and without having to go to court, I was able to niminate a dual carehome in my area where my parents could be moved to. I found one and they were immediately moved to it in a double room. My mothet is handled by the nusing staff and my father is handled by the residential staff.
Its still a big problem as they don't like being in a home, but they are fed and cared for in a way that would not have been possible if they had stayed in the residential flat.

Do I regret having to get them in a home - yes.
Do my parents thank me for it - no
Do I think it was the only option open to me - yes
Can I rest assured that I have done everything possible for my parents under the circumstances - yes

I am also Enduring Power of Attorney. They would not have been able to handle all their affairs anymore.

Did I want it - NO
Do I have a duty to my parents to look after their affairs - yes

All in all, it is never nice to have to make decisions that affect your parents especially when it means moving them out of their home (castle), but sometimes you have to look at the real world, and try not to let sentiment come into it. It is probably one of the most heart rendering decisions I have ever had to make in my life. I honestly beleive that I couldn't have done anymore for them.

The effect on my own family was enormous, but how can you sit back and let people who don't give a toss get away with what they do.

Nutty - you have to stand strong and convince your mother that a home is the best thing possible for her in her circustances.
You need to look at various homes and go and see them unnannouced and really get a feel for the ones that are good. If you find one that has a place for your mother, get her moved there to see how she gets on. I don't see how you can leave her in her own place.

Remeber whatever you do, you will always have heartaches about it and recrimenations, but you can only do what appears to be best for her health at the time.

pm me if you feel I can help
I sure do know what you are going through.
Les

Subject: RE: BS: Supporting elderly relative-advice pls
From: GUEST,DB
Date: 28 Nov 05 - 02:16 PM

To The Villan,

It seems to me that you did the very best you could against, what is often, a wicked, heartless and pernicious system infested by 'professionals'. There may well be some professionals who are competent and caring (I didn't meet any when trying to care for my Dad) but mainly they seem to be ruthless, heartless, arrogant gits, with absolutely no knowledge of their chosen 'calling', who go out of their way to avoid their responsibilities. 'Professionalism' is the one of the curses of modern society.

Subject: RE: BS: Supporting elderly relative-advice pls
From: Rasener
Date: 28 Nov 05 - 03:01 PM

Thanks DB. Most people don't know what hits them when it happens. You need to be able to stand up to these people. Its so easy to give in, and thats what they work on.
One thing I have learn't, is that even if you are enduring power of attorney, most people you have to deal with do not accept that as being sufficient to handle their affairs and put blockades in front of you.