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 newbie question concerning 2 parents with dementia 
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post newbie question concerning 2 parents with dementia
Background:
Mom recently diagnosed with LBD and my dad is at mid level Alheimers. They both live with me and I am the only caregiver.

Up until recently mom was very patient with dad, but is beginning to ridicule him and expect him to continue to perform tasks. He can't remember what squash look like and can no longer pick out his clothes or put them away. He can still dress himself somewhat.

This past week mom fell again and has been much worse since. Dad becomes so agitated when we have to make a hospital ER run. Mom is becoming more and more discouraged and depressed. She does not know it, but on July 5, the doctor is going to inform both of them that he is contacting the DMV to have their driver's license remove. Mom's tremors are to the point where she can hardly eat or drink, but everyday she is convinced she is well. Since starting the Exelon patch, it seems that her "voices and people" are not there anymore. Is that what happens? Does that get better and then worse again?

My question:
I know this will really hurt both of them. They are already agitated and depressed. Should I ask for an anti-depressant? Is there something I should be doing to help them with this? There is just no reasoning ability left for either of them and wondered if anyone here has any experience with having two parents in similar situations.

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Mom 87 in AL with LBD diagnosed one year ago, Dad 87 in AL with AD diagnosed 6 years ago


Last edited by ksparks on Tue Jun 21, 2011 3:51 pm, edited 1 time in total.



Tue Jun 21, 2011 12:07 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: newbie question concerning 2 parents with dementia
Wow - you've really got your hands full. Have you considered hiring additional help or placing your parents in a care facility?

By all means, ask the MD for an antidepressant for your parents.

The Exelon patch does help some with controlling hallucinations. Whether it will help throughout your mom's journey is unknown.

Have you consulted with a local social worker or counselor about your situation? I think it would be a good idea to have an objective person visit you in your home to see what you are dealing with, and make suggestions for how you can cope.

It does seem that a few others here have had both parents dealing with medical problems at the same time. You might be able to uncover some by looking at the subject lines of posts.


Tue Jun 21, 2011 12:43 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: newbie question concerning 2 parents with dementia
I am so sorry for what you are going through and I think Robin has made some excellent points. I can't imagine how you are going to be able to continue the care of two people getting more disabled all the time. It's not too early to start looking for alternative living situations for one or both of your parents. I know how tough it is. Been there, done that, but foruntately not with BOTH ill and disabled at the same time. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Jun 21, 2011 12:55 pm
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: newbie question concerning 2 parents with dementia
I have consulted a social worker. We have someone coming in 3 mornings per week, but mom is furious about it. I keep telling her that she will need to ask the doctor before we can stop them from coming. That is working for now. On those 3 mornings I try to escape for awhile and sometimes leave when they take their nap which thankfully is still happening.

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Mom 87 in AL with LBD diagnosed one year ago, Dad 87 in AL with AD diagnosed 6 years ago


Tue Jun 21, 2011 3:54 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: newbie question concerning 2 parents with dementia
I am so sorry that you are dealing with two parents' dementias at once. I am only dealing with my mother's and even that feels overwhelming at times.

Others have given you some great input. My two cents are that you should not expect to have rational conversations with dementia patients (at least those who have progressed past a certain point). It is or will become impossible for them to reason for themselves or understand your reasoning. It's hard to stop expecting rational thinking (I still struggle) but you need to.

Moreover, they are going to be mad at you sometimes! It is hard to adjust to displeasing one's parent(s), but in this case, the roles are reversed and you are in the parental role, making the unpopular decisions. Just focus on what is their best interests, and get used to them being mad at you. For instance, your mother is not going to understand that you need the helpers three mornings per week because you cannot do it all. So, as my son-in-law says, take the wrath.

I hope you will keep coming back to the forum. Most of us haven't dealt with two parents having dementias at the same time, but you will find a lot of understanding, support, and good ideas here just the same.

Julianne


Tue Jun 21, 2011 5:04 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: newbie question concerning 2 parents with dementia
Oh my! Double oh my! What a gargantuan task you have on your hands. Not only two persons with dementia but with two different kinds of dementia, at different stages, just to keep things from getting boring. You'd best be careful or the authorities will expect you to get a license to operate a group hom! :P

Seriously, you cannot do this alone. Help three mornings a week is a great start, but I'll bet it isn't sufficient. Do you also have homemaking help -- cleaning and laundry? As others have mentioned, it is a good idea to start researching care facilities, but while your parents are with you take advantage of any and all help available. Anybody can make the beds but only you may be able to calm Mother down. Save your energy for the things you are most needed for and try to delegate as much of the household tasks as possible. This includes locating good take-out food sources and discovering the best frozen dinner brands.

I think it is great that the driving license news is going to come from a medical professional. That won't entirely stop them from blaming you, but it will help a little. You are right to expect them to take it hard. I'll bet my husband mourned his driver's license for about a year. Today, 8 years later, he was asked by his case manager to name one thing he would want in his life if he could have it. He said his license back and a Miata! He isn't in constant agony over it, but the loss of his independence that driving represents is deeply felt.

It sounds like an antidepressant would be helpful even without this upcoming bad news.

Take care of yourself. Use some of that morning time for a pleasant walk or reading trashy novels -- don't use it all up running errands and doing shopping!

Jeanne

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Jun 21, 2011 6:12 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: newbie question concerning 2 parents with dementia
You do have your hands full with both parents and I am thinking you must be a saint for caring for them both, it might be time to look for other options !

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Irene Selak


Wed Jun 22, 2011 6:01 pm
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Joined: Wed Sep 30, 2009 8:25 am
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Post Re: newbie question concerning 2 parents with dementia
I can't even imagine what it would be like to take care of two parents with dementia. You need to get help. Yes, they will resent it and be angry. The flip side is that they will be safe. I went through this, but stood firm. I now have a caregiver here five days a week for seven hours. I would be crazy if I didn't. I know my limitations and best of all, I can enjoy the time I spend taking care of my mother-in-law. The right caregiver can be a true blessing.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Thu Jun 23, 2011 9:04 am
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: newbie question concerning 2 parents with dementia
We have seen a lawyer concerning other options other than keeping them at home. Money is an issue and they will not qualify for Medicaid because dad's pension is more than $3000 per month. So far, dad is in great shape physically, but mom deteriorates every day. I appreciate your comments and suggestions!

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Mom 87 in AL with LBD diagnosed one year ago, Dad 87 in AL with AD diagnosed 6 years ago


Wed Jul 06, 2011 5:26 am
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: newbie question concerning 2 parents with dementia
Hi Ksparks,
I have two parents unwell - Dad in late stages of lewy, bedridden, Mom bedbound also and sufering from severe depression - Dad is 85, Mom 82. We are in Ireland so things work differently here.
Do you have any siblings to help? Up until very recently I was coping(just about) on my own but my own health began to suffer, and I had to demand help from the rest of the family. We now have a set roster for who does what work at what time. This is a huge help.
Secondly, since Dad has had a recent massive decline, our public health nurse hired two nurses to come every day for an hour to wash and turn Dad. We also have a home help girl callling twice a day afternoon and evening. This is also a lifesaver. If you could ask your parents doctors if they can recommend somewhere for you to get information and practical help, that might start you on the road to discovering all the help that you can get, both for your parents and yourself.
It is very difficult to stand back and look at the big picture, but I can now see it in hindsight. I had run myself into the ground and ended up not being able to look after anyone, my own children included. It was the wake up call I needed when I had to have surgery brought on by overlooking my own health issues. You must factor in your own health, mental as well as physical. The care of two parents is a monumental task, and not one to be taken on alone - you need help. Ask neighbours if they could call even for half an hour for a chat, or try to set up a roster with relatives so that someone calls every day/evening for a little while to give you a break.
We have an association here called Caring for Carers, and it was through these wonderful people that I found out about all the services and help that was available to us.
I find if you let the professional (in this case the doctor) pass on the bad news re the driving licence, then they are less likely to take their frustrations out on you. Any time we had to tell Dad something we knew would upset him, we let the doctor tell him, and then made a huge play of sympathy for him and told him it was really awful, but we couldn't go against doctors orders.
There comes a time with this disease when white lies are a must. Whatever works, don't feel guilty about it. Play along with the situation - we lied to Dad all the time. It was only to help him - for example - he was complaining about a neighbour that was spying on him all the time - we told Dad we had reported him, and soon Dad forgot about it. Be inventive - you are not being mean by lying - you are making life easier for them as well as yourself.
Its is an extremely difficult situation - I know exactly what you are going through. But please, please look after you - if you get sick, who will be able to look after them. Come here often, it is a lifesaver and a sanity saver, where there is great support and advice. You can email me any time if you wish,
God Bless, Ger x

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cared for Dad who passed away on January 28th 2013 R.I.P.


Wed Jul 06, 2011 11:41 am
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