Helpful hints about family care of a relative

[SilentMute]

Hello, everybody. I am about to voluteer at a local hospital. They are planning on having me on the Geriatric floor for patients who are no longer appropriate for assistant living facilities, but whose insurance has ran out and can't be transferred to a nursing home. I am particularly going to be dealing with the families of the patients.

I would appreciate any advice or links from the people of the forum who have had to take care of an elderly family member, particularly Alzhiemers. I live in the States, so some programs (if you live in another country) may not be available here. However, ideas may be nice anyway, because my problem is that I'm looking for resources, but I may not know where to look. Did you find churches to be helpful, for instance?

What I am interested in is cost effective tools that you found that were needed to care for an elderly person (for instance, Alzhiemers--I've heard of alarms that can be installed to notify you if the person leaves the house). Also, was there anything that you felt you weren't prepared for that would have been nice to know? What types of attitude of healthcare workers or social workers did you appreciate or not appreciate?

I realize I may not be bringing up very happy memories, but I would really--really--really appreciate information. The position I am going to be going into is probably not going to be pleasant. I am going to be dealing with families that already have too much going on in their life, and now they are going to be forced to take care of a loved one that really is too sick to be at home--but because they have ran out of insurance, they have to take care of them. They are going to be upset. I would like to be as helpful as possible, and I would like to know how I should act towards them.

[soundofmusic]

When my husband had brain surgery in 1990, the VA was very helpful until they realized he was not improving; this seems to be the problem of many places now, a person has to have potential to be kept in a rehab facility.

It was very difficult with my husband, as he could not be left alone. At some point, I was able to get disability from the VA and SSI for him; but until them, my 15 year old daughter quit school so that she could watch him while I worked.

I do suggest that before leaving the facility; make sure the family has a visit with the social worker. If the person is aware, invest in a necklace security device that they can call assistance when they fall. Keep medications out of the way and pour them in a daily holder so that the person doesn't over take their medications.

Any other suggestions.

[Helga]

when it comes to Alzheimer's the people's personality can make a big change, the sweetest people can become violent or just use words that hurt. I work in a home for the elderly and in a part of the home with extremely sick people and all the doors are locked and you need to push special buttons on the elevator so people with Alzheimer can't get out alone. the family often knows a totally different person than the one you meet for the first time. a sweet old lady I once took care of tried to stab me with a fork because I accidentally startled her, this is something that surprised her family a lot.

deep breaths are my first advice! my day today was filled with people asking me the same things about ten times screaming and shouting and nothing you can do to help and being spit at, but I was also told that I was the best girl in the house and that I take such good care of them. this kind of a job has so many good things but is really hard and stressful. the small things you notice about the people you take care of makes the most difference to the family...



I do admire you for taking this job I am sure it's very hard being forced to take care of people that are so sick and people will be very upset and angry often, I have seen people that have taken care of their loved ones for years and when they finally get them into a home the can't visit for a long time they feel so sad and guilty


I have worked in this home for 8 years now and if there is anything else I can add to this just let me know. :)

[SilentMute]

If you don't feel comfortable replying to the thread, because your experience is too personal, you can also PM me.

[Helga]

I think it's a good idea to know the stages of grief, the patient and their families are all grieving something when things have come to this point, health issues are at the top of that list and also many people find it hard to have someone else helping them with their most private things like bathing and using the toilet.

one thing that always cheers the people I work with is animals, visits from the red cross do amazing things! one thing I can mention is a woman who can't remember in the morning that her husband is dead, knows the dogs name that visits weekly and what she fed him the last time he came! puts a big smile on their face :)

[soundofmusic]

You make a very good point, Helga.
The stages of grief are present with any lose of function, whether it is terminal or just the inability to prepare ones meal.
I often find that one difficulty, once a patient has been transfered home, is that the family and patient expect to pick up with their former activities; this is further complicated by the hospital staff who are anxious to discharge and do not inform the family of the challanges they will face after the patients decompensation.
Of course, I often hear families say, "Oh, Dad is just like this because he is in the hospital, once I get him home he'll be his old self"

[kasie]

Two of the nurses who cared for my dear father in the later stages of his dementia took my mother to one side one day as she as leaving after yet another silent visit - Dad had long ceased to be able to talk - and said, 'We've been looking at Roland and we think he must have been a bit of a smasher when he was a young man - have you got any photos of him?' My Mum brightened up at once and said 'Oh, yes, he was - film star good-looking!' She went home and went through the albums and on the next visit took a selection of pictures to show the nurses who oohed and aahed and giggled with her. They did her a power of good because we had reached a stage where we could only think of him as a sick, sad wreck of a man and the grieving was almost unbearable (and still is, it doesn't go away) but they reminded her he had not always been this way, once he had been tall and strong and laughing and had made heads turn and this was the man she had married. Those nurses were not only caring for my Dad, they were supporting my mum as well and for that, I can only thank them. Silent Mute, I commend you for your courage and strength in volunteering for this kind of much needed support.

[Helga]

this is so sweet kasie and I do agree talking to the family about the person they knew is important. because I am only 24 not many relatives like to confide in me, only those who know I have worked there for 8 years do. one lady died a few weeks ago and her daughter was crying and came to me and hugged me and thanked me for taking such good care of her mum and I can honestly say that is the best compliment you get in this job.

[SilentMute]

Thanks for sharing your stories. I really do benefit from them.

People react differently, so there is never a foolproof method on how to respond to a situation. What works on one person won't work on another. That is what makes situations like these so difficult. Some people might react with suspicion and jealousy if nurses came up and talked about how handsome their husband might have been.

You have to adapt to the person, and pray--I suppose--your instincts are good enough to figure out what they need. When my stepfather was sick, I pretty much focused on who he was then--not what he used to be. I would be worried that if I brought up what a person used to be, it might actually cause more pain to the person rather than lessen it--because it would remind them what was lost.

So I'm glad to hear about different approaches, because some of them--while they may not work on everyone--are not things I would have thought of doing because I would worry that it would increase the person's pain.

[kasie]

Of course, use your professional acumen to judge the appropriate approach to the individual, SM. Sometimes people are angry about what has happened to their loved one and they need a calm, understanding person who will help them work through the anger and the subsequent sadness and depression. For some, as with my mother and myself, the sadness was so long term that we could no longer remember the person my father had been and could only see the very sick man so it was a particularly skilled response to bring back the memory of the fit man.

btw - the Alzheimers Society of Great Britain has a useful website with all sorts of info for carers, both at home and in hospitals, which may give you some support and ideas. I dare say there is a similar voluntary society where you live.

[soundofmusic]

Of course, use your professional acumen to judge the appropriate approach to the individual, SM. Sometimes people are angry about what has happened to their loved one and they need a calm, understanding person who will help them work through the anger and the subsequent sadness and depression. For some, as with my mother and myself, the sadness was so long term that we could no longer remember the person my father had been and could only see the very sick man so it was a particularly skilled response to bring back the memory of the fit man.

btw - the Alzheimers Society of Great Britain has a useful website with all sorts of info for carers, both at home and in hospitals, which may give you some support and ideas. I dare say there is a similar voluntary society where you live.

I recall, after my husbands stroke, I would go to the hospital every day and spend hours while he stared at the tv and staff quietly moved without speaking. I felt so isolated! It was as if my husband, all but the form in the bed, had disappeared and had taken part of me with him. It would have been nice for the nurses...or someone...to take a few minutes to chat...anything.

[kasie]

I do so know what you mean, soundofmusic - everyone tippytoes round, literally and figuratively, in case they 'offend' you and you are crying out to talk to someone who understands and can maybe help.

There was no Alzheimers Society in the days my dad was ill - Mum was left to cope and find out info as best she could - no internet for research, either! I was amazed at the change wrought in her by caring for my dad. From being a very private and retiring person she became a quietly demanding lady who would not be fobbed off with platitudes and required matters to be made clear to her. Not only that but one day when she saw a lady trailing an elderly husband quite clearly in the early stages of dementia round the supermarket (because she, like Mum with Dad, could not leave him safely on his own at home and had no one to help) Mum approached her, put her hand on the lady's arm and said, 'My dear, I do understand - I've been there too, I'm so sorry.' The almost tearful smile and the quiet 'Thank you' she got in return spoke volumes. 'I couldn't leave her without letting her know she wasn't on her own' she explained as we left the shop. Nowadays, carers are not left on their own so much but then it was hard to be left alone.

[soundofmusic]

I do so know what you mean, soundofmusic - everyone tippytoes round, literally and figuratively, in case they 'offend' you and you are crying out to talk to someone who understands and can maybe help.

There was no Alzheimers Society in the days my dad was ill - Mum was left to cope and find out info as best she could - no internet for research, either! I was amazed at the change wrought in her by caring for my dad. From being a very private and retiring person she became a quietly demanding lady who would not be fobbed off with platitudes and required matters to be made clear to her. Not only that but one day when she saw a lady trailing an elderly husband quite clearly in the early stages of dementia round the supermarket (because she, like Mum with Dad, could not leave him safely on his own at home and had no one to help) Mum approached her, put her hand on the lady's arm and said, 'My dear, I do understand - I've been there too, I'm so sorry.' The almost tearful smile and the quiet 'Thank you' she got in return spoke volumes. 'I couldn't leave her without letting her know she wasn't on her own' she explained as we left the shop. Nowadays, carers are not left on their own so much but then it was hard to be left alone.


I also found that my husbands illnes made me more assertive. I now had to make decisions for his welfare as well as my own. How did your mother do after the loss of your father? I find it rather difficult to find a purpose quite as compelling.
As a nurse, I try to encourage families to learn more about their loved ones illnesses, check medications and so forth. Of course, they sometimes feel that I am asking them to second guess the medical community; or they are too burned out and want someone else to take off the load of making decisions. I understand that; but I also realize that we are tormented by all of the wrong decisions we made with our loved ones later.

[kasie]

She coped - she was that kind of lady.

As for the wrong decisions - hind sight is 20/20 vision: it's important not to let guilt eat you up.