Christmas and Dementia

[mominthemiddle]

My mom is the primary caregiver for my father, who is in the middle stages of the disease. She has some paid help, but has a bad habit of firing the caregivers or reducing their schedules soon after they have been hired because she thinks she can handle my dad's care herself. Then she gets overwhelmed, hires someone new, and repeats the cycle. I've backed off in arranging agreed-upon care , cause she ends up cancelling out the work done. I help with some caregiving, but work full time and am a single parent.

I just left my parent's home after Christmas dinner. Between my Dad's constant questions and my mother's morose outlook on life, it was difficult at best. I felt guilty for leaving after only a few hours, but I needed a mental health break myself! I'm worried that my mother is reaching caregiver burnout, and that my father is not being safely supervised due to my mother's failing hearing. Anyone have any ideas?

 

[Jude]

Dear MITM,

Well, some days you can cope with the repetetive questions and the general depression and sometimes it all gets too much to deal with. When it hits you that way then the best course of action is to beat a diplomatic retreat - so don't feel badly about it. Since you're a single parent and have a full time job, then you need to have time out too.

All 24/7 care givers need time out before they burn out! It sounds like your Mum has a chance to recharge her batteries a little when she has outside carers to help and then feels able to cope again alone, without really having had a sufficent rest. She may also feel badly that she can't manage by herself and that she 'should' be able to do so, hence her habit of dispensing with the outside carers so quickly.

Have you discussed the possibility of respite care for your father? Short, regular breaks would definitely allow your Mum to have a well earned rest. Perhaps it would be possible to suggest this in terms of her own health. If she feels that she has to keep things going virtually single-handed then her health will suffer and that won't be good for either of your parents in the long term. Also, day care [if not already in place] would give your mother a break for a few hours each week as well. Otherwise, with the next new carer coming in, perhaps your mother can be persuaded to actually leave the house and go out to the hairdressers or do something that she enjoys just for herself during those hours. Maybe she hasn't even had time to think about getting a hearing aid yet.....

Hope this is helpful.

Best wishes,

Jude

 

[boomer]

hi

i read your post and agree with jude .....respite seems to be the answer...is this i n place as your mum has domicilliary care ...i am fairly new to "organising" things. mum is carer to dad and her pride,stubbornness etc,has,to date,got in the way of care from qualified people ....dad had his first respite of 2 weeks a few weks ago..it caused some problems but that was due to a complicated set of personal problems other than the alzheimers situation......mum wouldnt considder domicilliary care ,but following a traumatic weekend ,accepted respite ...after 2 weks rest,she was a lot better.domicilliary care is in place now he has come home ,i just have to keep reminding mum of how bad thins had got when she mentions doing it all herself.....then things get back on track....

i hope you can get respite sorted ...you to need a break...it doesnt just affect mum and dad ....take care and keep us posted...anne x

 

[Dotty]

Carers need to care for themselves

As a long term carer

I understand only too well how tired one can get.

Good music, long candle lit baths, a visit to the hairdressers, a massage,
all those can be done within two hours.
When the person you are caring for has a nap, you take a quiet time out and read or sleep.
If a friends, family or a carer can sit in try and get out, for a meal with friends, a day away. etc.

One cannot live the life of an ill person. To enable you to cope you need to bring something new into your life and into the home, or you end up living the life of an invalid.
I have looked after my husband for ten years, He is totally bedridden now. I try to do all of the above things. You also have a life to live.

 

[mominthemiddle]

Jude,

Thanks for your reply. Mom has Dad at a Respite Center two afternoons a week. The Center is open three days, but she keeps cancelling the third day, then has to get on the wait list to get the third day back. She cancels because she says she runs out of things to do when he is gone, and it is expensive (it's only $35 per day, though, and the money really isn't an issue).

She is starting to talk about placing Dad in an assisted living. My siblings and I are considering calling a family meeting this weekend to discuss the different options with her. She has carers two days a week for 4 hours a day, but won't leave them alone with Dad--they do housework and drive to appointments. I suppose the other option is increasing the care at home.

Mom broke her hip 4 months ago. She has a lot of pain and uses a cane now. I'm concerned that she has reached a breaking point. Any suggestions for how to approach the subject at the family meeting?

Thanks for your words of wisdom.

Sue

 

[mominthemiddle]

Dotty and Anne,

Thanks for your ideas. Mom definitely needs more of a respite from caregiving. I'll have to think about ways that could happen, and suggest them.

As you say, Dotty, you have to live your own life too, and the carer can't live the life of an invalid without becoming one themselves. Your words were so profoundly simple, I think I'll share them with Mom. Maybe they will open her eyes and help her see that she still has a life to live.

I sure appreciate the chance to talk about these issues with people who care and know what it's like.

Sue

 

[Jude]

Dear MITM,

In my opinion, it seems like you have 3 possible options. Extra care support at home OR respite breaks for your father [usually fortnightly at approx 6 weekly intervals] plus extra care support at home OR full time placement in assisted care.

Actually these options seem to be the main progression when dealing the AD sufferers and you probably need to plan for all of them, depending upon the circumstances.

By all means have a relaxed and informal family meeting with your Mother. You may all decide to go with the first option to alleviate the immediate pressure and give yourselves time to investigate and implement stage 2. Option 3 will need to be reseached very thoroughly to ensure that your Mother is happy with the choice of care home.

If you progress gradually through these stages then your Mother will hopefully feel much less pressured about her role as a carer. She will need time to adjust to having more time to herself without feeling lonely. It's going to be a big change for her and not a little scarey. If you have the time, then move slowly and gently on this. Ultimately your father will need full time assisted care but only your family can decide when that should be.

Hope this helps a little.

Jude

 

[Lynne]

The Center is open three days, but she keeps cancelling the third day, then has to get on the wait list to get the third day back. She cancels because she says she runs out of things to do when he is gone, and it is expensive (it's only $35 per day, though, and the money really isn't an issue).

Mom broke her hip 4 months ago. She has a lot of pain and uses a cane now. I'm concerned that she has reached a breaking point. Any suggestions for how to approach the subject at the family meeting?

Sue

2 things occurred to me from the above:

A/ Could you get Mom doing something for herself on that 3rd day? A regular day out, perhaps visiting a good friend or relative who she hasn't been able to get to see since looking after your Dad has taken priority. Or maybe a regular hair-do, beauty treatment, a massage/physiotherapy (might help with the hip pain), manicure, visit to the cinema or theatre etc. etc. (obviously I don't know your Mum's interests, but you will). If it's worth $35 a day to see your Dad looked after, it's also worth her spending that on herself once a week if that's possible (look on it as an investment to improve their quality of life - it may not be for long anyway) or even once a month.

B/ I take it that your Mom will be part of the family conference?
It might be a good idea for everyone to realise (and perhaps say) that with AD everything changes every now & then, so matters discussed & 'decisons' taken at a family meeting aren't set in stone. What is a good idea this week may be totally impractical in a month's time, for some reason, so more meetings than one are likely to be a good idea. Therefore no-one should run away with the idea that 'THE family meeting' is going to solve all problems or set up a rigid set of rules. Rather there should be a calm but frank exchange of ideas & points of view, with everyone counting to 10 before making hasty remarks or reactions. It's so easy for emotions to rule over manners in the sort of situation you find yourself in, so try not to let any family 'baggage' or old scores find their way into this new situation. (And yes , I do belong to a sometimes-volatile family!)

Pehaps, prior to the 1st family meeting, you could circulate a few relevant posts or threads printed off from this Talking Point board, so that any family members who don't know much about AD can get themselves up-to-speed in general terms.

Good luck

 

[connie]

Re Lynne's last paragraph I have used TP view regularly in this way.
I print a few before each AZ meeting, as so many people do not have access to computers these days.
I regularly show my family different threads, printed off, and now they begin to ask after TP members, BUT I feel their horizions have broadened as they accept different aspects of dementia.

Do hope things get a little easier for you, mum and the rest of the family.
Love Connie