Care no more to clothe and eat

August 1, 2009 1:37 PM

I am considering going to live with my 83 year-old grandmother, whom we think has some kind of (not yet diagnosed) dementia, in a year or so. She lives 500 miles from my friends and family. I know caring for her will be hard; how can I prepare?

This was my grandmother (step-grandmother, in fact), eighteen months ago. Since then her memory has got worse and her ability to care for herself has declined. She has lost weight ('fridge full of gone-off food) and is currently wearing the same clothes that she has been wearing for at least three or four weeks. Her rationality has also declined a bit.

She appears very anxious about her memory loss but in denial about it. I live 500 miles away. We visited two weeks ago and are going back in the next few weeks because of further concerns from other people in the neighbourhood. A friend of hers is going to the doctor with her next week. We have talked to her about power of attorney and the forms for this are ready to be signed by her doctor (who has to confirm that she currently has capacity to grant a power of attorney).

I am planning to use as much of my leave as possible to visit her, and am considering moving to live with her in about 12-18 months. I have commitments here until then (I do realise she may die before then, or have to go into residential care). My question is, what can I do now to prepare for the possibility of caring for her? I would plan to get a job for about three days a week whilst doing so. She lives in a rural area.

posted by paduasoy to human relations (13 comments total)

You are awesome. Curious, could she come live with you so as not to be 500 miles away from family? I understand it is easy to become worn out as a primary caretaker.

Faith in Mankind - 1
Turning the other shoulder - 0

Win!
posted by kiwi-epitome at 1:48 PM on August 1 [4 favorites has favorites]

If you can get someone else in on this, someone else to move in with you and your grandmother (assuming she is for it), it might help you both a lot.
posted by pracowity at 1:54 PM on August 1

If you can get someone else in on this, someone else to move in with you and your grandmother (assuming she is for it), it might help you both a lot.

Seconding this. Even if you can't arrange for someone to move in, it will help your sanity if you can get someone to come in for an afternoon or two each week so that you have some time off. It's incredibly draining to be a round-the-clock caretaker for anyone, let alone someone with dementia whom you love dearly.

Your grandmother is lucky to have you in her life.
posted by corey flood at 2:05 PM on August 1

Make sure you have a computer and internet access there. The internet will not only help you with finding information and support groups but can be tremendously important as a social outlet. Caretaking is very demanding, and you'll want Something Else to dip your brain and heart into on a regular basis to help minimize burnout and just to keep a bit of you being you.
posted by Billegible at 2:14 PM on August 1

The best answer may be to move her nearer to other relatives who can share this awesome responsibility. Residential care is another strong possibility if the family can afford it or if insurance covers it (unfamiliar with 24 hour care provisions in the UK.)
She will not get better, only worse and you will never forgive yourself if she wanders off. Wandering off is very common among dementia/Alzheimer's sufferers, and the results are sometimes heartbreaking. Who will watch her if you are able to find a part -time job in her rural area?
posted by Cranberry at 2:24 PM on August 1

could she come live with you so as not to be 500 miles away from family

This, if I could I would favorite what kiwi-epitome said about a million times. It is wonderful you are thinking of doing this but it will *not* be easy and you yourself will need the support of friends and family. You will need all the support you can get. If it is indeed dementia she will eventually not be able to be left alone (I am afraid she may already be approaching that point), and while there are services available, like adult daycare, it will be very tough in a rural area.

Data point - I've seen this up close. My mother died recently at of the end stage of Parkinsons with dementia. She was in a really good nursing home and my sister lived 10 minutes away, and both she and my father, who lives in the retirement community associated with the nursing home, spent a lot of time with her at the nursing home. It was a long hard road for them, even with lots of people caring for her. Also, my mother-in-law was the primary caregiver for her husband for a couple of years after he was disabled from 2 strokes. She managed to keep him at home, and cobbled together a variety of assistance so she could do that, but she occasionally would arrange for a weekend "off" and go to a hotel somewhere and just sleep, because it was so tough on her.

With that said, she has not yet been diagnosed. It is good she is going to the doctor and important that she be thoroughly evaluated by the doctor. Is she on any medications now? Sometimes the wrong medication or the wrong combo of medications can mimic dementia. Vitamin deficiencies, like vitamin B12 deficiency, which are not uncommon in older women, can cause dementia-like symptoms and are often very treatable.
posted by gudrun at 2:26 PM on August 1

My dad is now in a nursing home, six months following his diagnosis with dementia, and probably was symptomatic for years before we understood what it was (not Alzheimer's).

The 36-Hour Day is probably going to be the book most recommended to you.

Do look into area support organizations. My mother and I have been going to a monthly caregivers' support meeting and it has been tremendously helpful. Do contact the local county's human services department to find out what your grandmother may be eligible for.

Look into issues such as Durable Power of Attorney, or a Living Trust, to protect her assets -- particularly if she must move into long-term care. You may need an Elder Law attorney to assist her with end-of-life planning. This is more important than you may realize. There are differences between heirs, beneficiaries, joint asset custody, and paid or unpaid caregivers that are best arranged well in advance of incapacity to avoid hurt feelings (for instance, many times the caregiver relative turns out not to be a main beneficiary and can end up broke and homeless).

Being a caregiver you may be faced with medical situations such as dispensing pills or picking up prescriptions or communicating with doctors. Make sure you are given appropriate Health Care Power of Attorney for this. Be aware that even an HCPOA does not trump HIPAA and you may be denied information about her as a patient unless she explicitly grants permission to her doctors and any hospitals she may be taken to.

Make sure you communicate with your relatives as much as possible. It's likely there will be unexpected conflicts -- of interest and opinion. Some will feel guilty that you are doing the dirty work and they are sitting pretty 1000 miles away. Others will suspect you of having designs on their mother's assets.

Try to make sure you have a social life. A part-time job is good, but there may come a time when it conflicts with caregiving. Plan for that.

Be aware, too, that a lot can change in 12-18 months. If she is having trouble with activities of daily living now, by that time she may be past the point where you can care for her in her own home. Sometimes patients with dementia stay stable for years, but generally only if they're in good health and well cared for.
posted by dhartung at 3:00 PM on August 1

Sounds to me like she's forgetting to eat. My mother did this. You had to put meals down in front of her to get her to eat as she may have been hungry, but had forgotten what to do about it. Ditto the clothes. I would suggest you get a formal diagnosis and check out the Alzheimers site. This is not something you want to take on by yourself. It's exhausting, both emotionally and physically. I'd say she can't wait 12-18 months; she's in trouble now.

We found out the hard way that the picture put out of sweet old ladies gently rocking and smiling isn't what a lot of Alzheimers looks like. That might be a later stage, but, near the beginning, there was a lot of aggressive behaviour, paranoia, and wailing. My mother was devastated to find she could not remember or do things. She was very, very angry and blamed us for doing something to her. She would forget how to turn the handle on the door and think we locked her in. She thought we were poisoning her so stopped taking her meds and eating. After a huge struggle with health care providers whom she could fool just long enough to make us the bad guys, much wandering the streets, not eating and being sick from not taking meds, we finally got help from the local geriatric centre which specializes in all diseases that come with very old age. They were a Godsend. Them and some very kind cab drivers who took her to safety a few times even though she had no money to pay them. BTW, I was told (don't know if it's true) that moving someone from their environment to a new one can make things worse, as in we shouldn't have had mum move in with us. That's nice to know, but it makes deciding how best to help more complicated.
posted by x46 at 4:11 PM on August 1

As noted, even if she is strong as a horse right now, if she truly has dementia, she will not get better. You need to be very realistic about your limitations. If she falls, do you have enough strength to lift her? Can you get her in and out of a car? If she refuses to go to doctor's vists, what will you do? In a rural area, how long will it take for an ambulance to arrive? Who will take care of her when you are not there? Who will take care of her (or you) you when you just need a day off from her? Are you willing to change urine (or worse) soaked sheets for the third time today? Are there steps or stairs in the house or leading outside? If so, can they be adapted? I am just scratching the surface of things that you need to have concrete answers for.

Trust me when I tell you, all the good intentions in the world, all the caring you think you can muster, will not be enough.

I wish you and her all the best.
posted by sageleaf at 4:37 PM on August 1

In my late teens, I was a live-in caretaker for an elderly woman who had severe short term memory loss, paranoia, and all the other sad things that happen to a person who has dementia's brain.

Small meals frequently. If I didn't sit down with her, like she was entertaining me, she'd eat one bite and then just wander away. Getting her into the shower was nearly impossible; she became terrified and started hitting out. Washing her at the sink was easier, and .. again.. a social occasion for her; she turned me into a "beauty operator" in her mind.

Getting her into clean clothes was another huge problem. I took to waiting until she was asleep, and slithering on my belly into her room to place clean clothes in the exact spot she laid her soiled garments when she went to bed. That worked great for 2 weeks, until her daughter visited. The daughter was listening to me talk about my strategies for helping her, and laughed loudly when I told her about snaking the clothes. She said "my Mother sleeps with a gun under her pillow! You're lucky she hasn't blown your brains out!"

The dear old woman also spent a great deal of time accusing me of stealing from her. This was in rural eastern Nevada (USA); I moved on with a recommendation that she be evaluated for danger to herself or others. She finished out her years in an eldercare home.

As a nurse, I've seen so many elderly people who seemed reasonably oriented and aware in their day to day life completely lose that because something changed, and all the associations that they had chained together in a mental map just dissolved.

You're going to need backup, and yes, you may be a candidate for sainthood.
posted by reflecked at 4:55 PM on August 1 [1 favorite has favorites]

I've had two experiences with Alzheimer's, and I second those who say that there is a really angry, vicious, horrible period. Greatgrandmother has become the meanest creature on earth...she accuses her son (my father in law) of stealing from her, of trying to poison her...and the man dotes on her, loves her with all his heart. We all do. The change is so dramatic and it's so hard to deal with.

Do everything that dhartung suggested. Legal stuff has to be taken care of now, while she's still competent.

Be aware that sometimes, assisted living is the best option, but only you and your family can decide that.

If it's possible to move her to you, rather than the other way around, so that you still have your social helpline in place, that may work out best.

Good for you for taking care of a family member who needs you. Please remember that *you* need you as well, and take care of yourself.
posted by dejah420 at 5:22 PM on August 1

My wife's mother came to live with us for the last two years of her life. It was such a gift. It amazes me that I am so grateful for some thing that was so difficult.

If you do end up doing this make sure you are taking care of yourself too.

Another resource- Complaints of a Dutiful Daughter.
posted by pointilist at 11:05 PM on August 1

You're in the UK. Cool beans. I don't know much, but I've seen my parents care for their parents and various great-aunts. My parents were social workers, so they know the system. Even then it was hard.

Right Now:

Check her benefits. There's several she might be able to claim, and some that you will be able to claim if you are her carer. If the Benefits Agency (or what ever they are now) won't give you money you think you should get, go to the Citizen's Advice Bureau and they will help you. Don't be shamed about claiming benefits. She's paid her national insurance, she's entitled to it.

Talk to social services. They will be able to help with her care. You might not need them now, but you will later. Again, there is no shame in this, it is what they are there for. You might have to fight to get the support you want when you want, but please fight your corner.

Play the system. When we were looking for a care home for my gran, we found that they were cheaper near my aunt, about 150 miles away from the place where my gran had lived all her life. We moved her, she ended up with a lovely room over looking the garden and she spent the next few years telling us all about the neighbourhood cats and squirrels she watched all day. She wouldn't have had that if she'd stayed near her home.

In time for when you move there: Look up respite care, you will need it if you are going to be her carer.

Be open to new ideas. My gran got given acupuncture at the care home, and loved it.

To sum up:

Find out as much as you can about the system
Be prepared to fight the system to get what is right for your gran
Keep fighting, she deserves it.
I wish it wasn't quite so crap, but it is better than it ever was, and getting better all the time.
The CAB are your friends
You will find some amazing people in the system, cherish them.
posted by Helga-woo at 4:14 AM on August 2