Tips to avoid meltdown, please

[Alicenutter]

Yesterday, after a very stressful weekend (driving in a blizzard, staying in a hotel with a wedding party going on next to our bedroom until 6:30am, and more), I was not at my best. And I lost it with my husband. Several times. I cried, I shouted, I did all the wrong things. It's the Capgras thing - when he tells me he went shopping with a lady taxi-driver, and that he was running errands for me, well, I should be able to deal with it better, I know, but yesterday I just couldn't. Because sometimes it feels like I don't exist any more - I'm just a function of whatever is going on in his brain.

I know, I know. Take 10 deep breaths, go to the bathroom, think of all the good things and the things that he can still do very well. Like run rings around me in an argument!

But yesterday it just didn't work. The trouble at the moment is that we spend ALL DAY and ALL Night together, and I do not have enough time to put myself back together again. He is very fit, very active, and we run our business together. In fact, the only times I have on my own are when he thinks I'm not me, and i have to leave so his wife can come home. Otherwise she would be jealous.

On the bright side, we visited our daughter last weekend (hence the drive in the blizzard) and she was delightful with me and him. And our son is coming from University to visit next weekend. My husband doesn't know this yet, and will probably worry (and worry) about why he is coming, but I believe the outcome will be positive.

Sorry for the rant, but I feel safe doing it here!

 

[DMac]

Alice, I'm sorry you are having such a stressful time. I can't think of anything to say to help you, but you do have my sympathy. I hope you feel better for writing it all down.

You are right, you know all the things to do to get yourself calm again. Knowing them and doing them are different things, though. But one thing about your situation strikes me - it is just you and him together most of the time. That is bound to cause you undue stress. I know you are in the USA and things are different from here in the UK, but is there an option for day care or something similar for your OH, just to create a bit of time and space for you?

Wishing you some calm and relaxation. I am sending you a bubble bath over cyber space!

 

[Scarlett123]

Alice, you sound soooooooo stressed, and all I can advise you is to choose which battles to fight. You can't win the war, so let The Other Woman Who Is His Wife, have her place. Being a carer for a loved one with AD, 24/7, and being perfect, is like trying to knit with water ....................... impossible!

I never mentioned visitors, trips, even what we were having to eat that night, until the last minute, because I knew John would forget, which was OK, but would then ask me questions about it a million times, which was more than I had the patience for.

Rant away, that's what TP's for xxx

 

[Alicenutter]

Thank you so much. Ranting here REALLY helps. I think, I hope I will deal better with stuff once my husband is diagnosed. Maybe I'm too wordy, but putting a name to something seems like it would help. And talking to somebody medical at this stage would be a great relief.

 

[Debs42]

Your post sounds very familiar to me. I would love a diagnosis too - just do we can talk about it more easily, just between me and my husband, and with friends. It's made more difficult for us because my husband has a psychosis - and delusions, which ,at or may not be connected with his dementia, and because earlier this year the medical people thought he might be a danger to himself or others, they are concentrating on dealing with that with medication and there seems no urgency in sorting out the dementia. Also he doesn't do badly enough in the tests, despite clearly having real memory and cognitive problems, obvious to all around him.
I sympathise with your anger - I have no patience with constantly being asked the same question, being told the same things, finding stuff put away in the wrong place, despite having told him minutes before where they should go. And we are just in the early stages! I am teaching myself, and getting better at ignoring it all, so I hope I can get through it - I'm sure you can too.

 

[Scarlett123]

Tips (as requested)!

I'm only speaking from my own experiences, acquired after looking after my late husband, with AD and other health problems, for 12 years, but these are some of the things that I s-l-o-w-l-y learned worked best for me:

1. Accept that you are not Mother Theresa and you are going to have off days

2. Accept that your other half will have some bad days, and some that aren't as bad

3. Accept that a lot of what you read about Help For Carers, being available, was written by Hans Christian Anderson or the Brothers Grimm

4. Accept that replying to your OH's same question, over and over again, will not necessarily sink in straight away - if ever

5. Accept that in spite of you living this life, day in, day out, there will always be people, who rarely see your OH, who think they know better than you

6. Accept that if you don't resist the urge to stab them, you will go to prison, and then you'll worry even more as to who is looking after OH

7. Accept that all articles that you read about needing 8 hours sleep, in order to function properly, were meant to be read by people not walking in your shoes

8. Accept that you can only do the best that you can, and nobody should expect any more than that

9. Accept that in spite of reassurances from everyone on here - you will, at times, feel guilty

10. Accept that there may well be times when you feel exhausted - but there's nobody else in the house to clean the mess in the bathroom, so you've got to do it

11. Accept that if somebody from an outside agency, Social Services for example, says "I'll call you straight back" - they won't

12. Accept that though this may not be the life you envisaged, after decades of marriage, this is the hand of cards you've been dealt

13. Accept that your other half, really can see other people in the room/believes you hid his/her keys on purpose/insists Mrs Thatcher is visiting you, and just go with the flow

14. Accept that you can fight some battles all of the time, you can fight some battles some of the time, but you can't fight all battles either some or all of the time, because there are only 24 hours in a day

and finally .....................

Remember, there are dozens of other TP-ers who have gone/are going through the same things as you, and, whilst they can't rush round and take over, and give you a break, and a hug, they're all here, ready to listen, sympathise and comfort you. xxx

 

[Amy in the US]

Alice, I am also sorry to hear you are having such a stressful time. I lived in both Minnesota and upstate New York for a total of about nine years, so I have experience driving in snow, including storms, and know how tiring that can be, but I'm glad you got to see your daughter.

I do not have any specific advice for you, just general, and that advice is that you need some help, some support, and some time without your husband. Please don't be upset at my presumptive and bossy tone; I hear that you are tired, stressed, and overwhelmed and that is what I'm responding to.

It is not reasonable for only one person to assume 24/7 care of another grown adult indefinitely, with no assistance, no backup, no respite, and no end in sight, especially while also running a business and a household. You will eventually get sick, have to go to the hospital, need to be out of town, have to shower and sleep and go to the bathroom, go places he can't or won't go, you get the idea. You would drop from the sleep deprivation sooner rather than later! There may also come a time when there are tasks you are unable or unwilling to perform, or that he won't allow you to help him with. You would do better to get a system in place, before a crisis or urgent situation.

I hear you that getting a diagnosis will give you some information to work with and maybe an idea of what you are facing, and agree that's a good idea. It may also start to connect you to some support.

But while you are waiting for the appointments/tests/et cetera, may I suggest you contact the Alzheimer's Association, and ask for the information for your area chapter? You may be able to find it online but every time I call them, I find out about resources I overlooked on the website or didn't know about, plus they are supportive and pleasant to talk to. 1-800-272-3900, and that's answered 24/7.

I would also look up your area agency on aging, or senior services center, or senior council. For example, if you lived in Brookline, it would be the Brookline Council on Aging, and there is also the Brookline Senior Center. If you Google "yourtownname plus area agency aging" you will probably find it, or try "yourtownname plus council on aging" if that doesn't work. If you can find anything vaguely in your area, and call them, if they are not the agency for your location, they will probably know who is.

This way you can start to investigate what services are in your area. These might include day care (at standalone centers or a hospital or nursing home or other facility), programs at the senior center, facilities that offer emergency and bookable respite care, support groups of all types (some will offer respite care), and there are always private caregivers available to hire. In addition to hiring a caregiver/companion/sitter, you should also consider hiring help for your business and home (cleaning, laundry, grocery delivery, prescription delivery, prepared meals, lawn care/gardening/snow removal, handyman services, you name it).

You will also want to make sure all the paperwork is in order, which should include wills, business paperwork, the all-important durable Power of Attorney, and also whatever Massachusetts has in the way of a living will/PoA for health care/etc. A good attorney can help with all of this. You might also find it helpful to retain an elder law attorney, if the situation is complicated and/or you may be facing Medicaid at some point, an accountant (because who wants to do the taxes?), and perhaps a financial advisor/planner.

I am sorry to add things to your to-do list or if I have overwhelmed you. I would start by calling the Alzheimer's Association and see what they can tell you, and of course pursue the medical angle, but please remember that you have to take care of yourself, or else you won't be in any shape to care for your husband.

No need to apologize for ranting, and that was pretty mild. TP is a safe place to come and talk about things and a great place for information and support.

Best wishes to you, and hope you are dug out from the storm!

 

[Grannie G]

Have you seen this Alice?

http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

 

[johnde2]

I Know Just How You Feel:

Yesterday, after a very stressful weekend (driving in a blizzard, staying in a hotel with a wedding party going on next to our bedroom until 6:30am, and more), I was not at my best. And I lost it with my husband. Several times. I cried, I shouted, I did all the wrong things. It's the Capgras thing - when he tells me he went shopping with a lady taxi-driver, and that he was running errands for me, well, I should be able to deal with it better, I know, but yesterday I just couldn't. Because sometimes it feels like I don't exist any more - I'm just a function of whatever is going on in his brain.

I know, I know. Take 10 deep breaths, go to the bathroom, think of all the good things and the things that he can still do very well. Like run rings around me in an argument!

But yesterday it just didn't work. The trouble at the moment is that we spend ALL DAY and ALL Night together, and I do not have enough time to put myself back together again. He is very fit, very active, and we run our business together. In fact, the only times I have on my own are when he thinks I'm not me, and i have to leave so his wife can come home. Otherwise she would be jealous.

On the bright side, we visited our daughter last weekend (hence the drive in the blizzard) and she was delightful with me and him. And our son is coming from University to visit next weekend. My husband doesn't know this yet, and will probably worry (and worry) about why he is coming, but I believe the outcome will be positive.

Sorry for the rant, but I feel safe doing it here!

It can be really hard caring for a loved one. My love will often hum continuously but she was doing it virtually all day and night.

I was so annoyed by it, that I took a duvet downstairs and slept on the sofa.

However, she came downstairs around 7am, still humming and going in and out of the lounge.
She is doing it again, and fast driving me crazy. Am I alone in having a partner with this?

 

[Casbow]

Avoiding meltdown

I'm only speaking from my own experiences, acquired after looking after my late husband, with AD and other health problems, for 12 years, but these are some of the things that I s-l-o-w-l-y learned worked best for me:

1. Accept that you are not Mother Theresa and you are going to have off days

2. Accept that your other half will have some bad days, and some that aren't as bad

3. Accept that a lot of what you read about Help For Carers, being available, was written by Hans Christian Anderson or the Brothers Grimm

4. Accept that replying to your OH's same question, over and over again, will not necessarily sink in straight away - if ever

5. Accept that in spite of you living this life, day in, day out, there will always be people, who rarely see your OH, who think they know better than you

6. Accept that if you don't resist the urge to stab them, you will go to prison, and then you'll worry even more as to who is looking after OH

7. Accept that all articles that you read about needing 8 hours sleep, in order to function properly, were meant to be read by people not walking in your shoes

8. Accept that you can only do the best that you can, and nobody should expect any more than that

9. Accept that in spite of reassurances from everyone on here - you will, at times, feel guilty

10. Accept that there may well be times when you feel exhausted - but there's nobody else in the house to clean the mess in the bathroom, so you've got to do it

11. Accept that if somebody from an outside agency, Social Services for example, says "I'll call you straight back" - they won't

12. Accept that though this may not be the life you envisaged, after decades of marriage, this is the hand of cards you've been dealt

13. Accept that your other half, really can see other people in the room/believes you hid his/her keys on purpose/insists Mrs Thatcher is visiting you, and just go with the flow

14. Accept that you can fight some battles all of the time, you can fight some battles some of the time, but you can't fight all battles either some or all of the time, because there are only 24 hours in a day

and finally .....................

Remember, there are dozens of other TP-ers who have gone/are going through the same things as you, and, whilst they can't rush round and take over, and give you a break, and a hug, they're all here, ready to listen, sympathise and comfort you. xxx

It never ceases to amaze me how this dementia lark can be so different in every case. When i read some things that people are dealing with and somehow still working and having a near "normal" life I think well we couldn't do that. Just getting to the dentist with teeth cleaned is a miracle. Can't go to the cinema. Going to town to shop for clothes is just misery. Getting on a bus means "please keep quite. Don't say funny things to complete strangers that I have to apologise for." I could go on but I'm boring. I admire so many of you. I feel am drowning in self pity. So sorry to be such a misery.x

 

[Aisling]

I'm only speaking from my own experiences, acquired after looking after my late husband, with AD and other health problems, for 12 years, but these are some of the things that I s-l-o-w-l-y learned worked best for me:

1. Accept that you are not Mother Theresa and you are going to have off days

2. Accept that your other half will have some bad days, and some that aren't as bad

3. Accept that a lot of what you read about Help For Carers, being available, was written by Hans Christian Anderson or the Brothers Grimm

4. Accept that replying to your OH's same question, over and over again, will not necessarily sink in straight away - if ever

5. Accept that in spite of you living this life, day in, day out, there will always be people, who rarely see your OH, who think they know better than you

6. Accept that if you don't resist the urge to stab them, you will go to prison, and then you'll worry even more as to who is looking after OH

7. Accept that all articles that you read about needing 8 hours sleep, in order to function properly, were meant to be read by people not walking in your shoes

8. Accept that you can only do the best that you can, and nobody should expect any more than that

9. Accept that in spite of reassurances from everyone on here - you will, at times, feel guilty

10. Accept that there may well be times when you feel exhausted - but there's nobody else in the house to clean the mess in the bathroom, so you've got to do it

11. Accept that if somebody from an outside agency, Social Services for example, says "I'll call you straight back" - they won't

12. Accept that though this may not be the life you envisaged, after decades of marriage, this is the hand of cards you've been dealt

13. Accept that your other half, really can see other people in the room/believes you hid his/her keys on purpose/insists Mrs Thatcher is visiting you, and just go with the flow

14. Accept that you can fight some battles all of the time, you can fight some battles some of the time, but you can't fight all battles either some or all of the time, because there are only 24 hours in a day

and finally .....................

Remember, there are dozens of other TP-ers who have gone/are going through the same things as you, and, whilst they can't rush round and take over, and give you a break, and a hug, they're all here, ready to listen, sympathise and comfort you. xxx

Great tips Scarlett. Thank you.

Aisling

 

[esmeralda]

It never ceases to amaze me how this dementia lark can be so different in every case. When i read some things that people are dealing with and somehow still working and having a near "normal" life I think well we couldn't do that. Just getting to the dentist with teeth cleaned is a miracle. Can't go to the cinema. Going to town to shop for clothes is just misery. Getting on a bus means "please keep quite. Don't say funny things to complete strangers that I have to apologise for." I could go on but I'm boring. I admire so many of you. I feel am drowning in self pity. So sorry to be such a misery.x

Please don't apologise for 'being a misery' Casbow, you're really not, we all need to offload and there's no better place than TP. It's very tempting to think you shouldn't complain because 'other people are having a worse time', but we're all in different places but everyone is struggling with difficult stuff. When someone is in the early stages it might not seem that the problems are so bad, but at that time you are having to deal with so much change and fear of the future it isn't any easier than when problems get more severe for example.

Hope you and your husband have a good time with your son Alice, and you manage to get some support.
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