Dealing with dementia?


#1

My husband and I were just married in August and have had to move right in with his father who has dementia. It’s HARD! we have no time to be newlyweds in addition to all the problems that dementia adds. Many in the family (other siblings) are still in denial about how ill he is. They keep telling themselves that ‘his memory is just a little slow’ or ‘he just can’t hear well so that’s why he has trouble’. This just isn’t true! At this time he can still care for himself enough to be left alone during the day while we work, but he is clearly confused. He can’t remember what day it is or what time of year it is… even with the tree up he could not understand that it was Christmas. I worry that he will try to cook lunch and will forget the stove on. It is getting to be a problem with his meds, there is a separate box for each day… but he since he can’t remember what day it is he often gets another one out… I worry that he’ll take too much or not at all. I’d appreciate others who’ve had similar situations telling their stories… it’d help me to find ways of coping.


#2

my soon-to-be-90 mom has advanced dementia…

For a long time she lived with us, and I would pay older ladies to come and just sit with her for company. Not cheap. But the time will come when you cannot do more and must consider the man’s personal safety.

If it becomes unsafe in your home… he must be moved. You are encouraged to look at his financial picture now to determine just how much help he will be to himself. If a home is necessary (mom’s is $4k/month), then so be it… and the other siblings need to know now that they will be obligated for dad for their fare share.

I can still see mom daily, and her room and food is very good, clean, and above all safe. She know me… but I really don’t remember the last time I heard her say my name. But she is still mom, and still needs to be protected… from herself.


#3

I’m a social worker in the field of Elder Services, we help keep people out of nursing homes as long as is possible, and help provide respite care to family members who are the primary caregivers. PM me if you want some info about what’s out there.


#4

There are so many issues to cope with - for you, your husband, and his father. If he is a veteran, try contacting the local Veterans Administration facility.


#5

I just want to say God bless you for being such a caring DIL to your aging and confused FIL…especially as such a new bride, this must be incredibly challenging and possibly a bit disappointing…offer up your suffering for the good of your marriage and the safety of your FIL while he continues to be here on earth. I’ll be praying for you.


#6

I wonder if he could have someone from your local home health services come and check on him a few days a week? Help with bathing, meds, etc.


#7

Well, at present he can still bathe himself and get himself simple things to eat. He won’t ever leave the house for more than 10 min or so… he has fear that someone will break in if he’s gone longer. He only leaves for doctor apt, and that is a battle to get him in the car to take him. He has a stranger fear, so no one can come over… health aide or even people we’d like to entertain. He even has trouble with family gatherings. We have no plans to put him in a home and we hope that personal safety doesn’t get to be a major concern as we’d have to find a way of having someone at the house 24/7. The other BIG problem is… he doesn’t remember that my husband and I are married… even with showing him pictures!


#8

I’m so sorry you are having to live with such difficulty and sadness, you are truly a wonderful DIL.

My grandmother also has dementia, she is 90. She lives at home still with my uncle as her only care giver. He does not work and has given his entire life up to care for her, for many years now. He can hardly leave the house. She is in a wheelchair and also has stranger fear, so taking her somewhere or bringing people in is just not an option. She will not take any meds, and this makes it more difficult.

I would strongly suggest you try to find a care giver support group in your area. Check with your hospital or parish and see if there is anything out there for you. Just being able to share with others, network for resources and support, may make it seem a bit more manageable. Especially since you can’t bring anyone into the home to help you. If you don’t take care of you, your husband, and your marriage, you will be of no use to your FIL. Take care of you so you can take care of him.

I will keep you in my prayers.

~Liza


#9

You can only take things one day at a time.

Be careful with the stove. Put a sign on it that says “Broken, do not use” or disconnect and reconnect it just when you need to use it.

You can use pill containers that are only filled up for that one day, and your husband can refill the containers every day that way he’s not taking two or three days the meds for lunch, but if he can’t keep track of time somebody might need to stay on him.

Check the medications hes on, overdoseing, which is very common for people with sliding facilities can be seriously detrimental to health, and side effects of some of the medicines may contribute to his mental state. Next time you go to a doctor talk about side effects and if any worry you possible alternative medications.


#10

I totally understand how frustrating, and tiring, and irratating this can be. There are some things to remember as a caretaker.

  1. Do your best, perfect is never an option. But you are doing a wonderful selfless thing.

  2. Understand that you will make mistakes, that no one is perfect but don’t beat yourself up over them

  3. It’s ok to lose it once in a while.

  4. Take some time out to do things you want to do. Get a manicure, go out with your husband, go to the mall, take a walk whatever, you need “you time” too.

  5. Look into support groups. They can be an AMAZING resource

There are wonderful services out there. In my organization we provide homemaking, personal care, medication reminders, lifeline, grocery shopping, laundry services etc. This helps people remain as independent as possible in their own home, or a family members home. We have transportation to dr.'s appts, activities, respite care for caregivers, volunteers to come sit with someone to chat, money management volunteers… all sorts of wonderful things.

You stated that he has dementia… is he on Medicaid? Because an adult day health, would be REALLY good for him, and for you. It gets him out of the house, socialized with his peer groups, participating in activities and therapies that might help him maintain (he’ll probably never improve) for a little while longer. This also allows you and your husband to be able to work, care for children, etc, and not worry that his father is setting the house on fire, calling the police constantly, fallen and is unable to get back up, had a major health crisis and no one knows. You’d be suprised how many people dread the idea of going to one of these, and end up absolutely loving it, and making some awesome progress. Demenita patients need stimulation to help their brains, and being around the same 2 people day in and day out isn’t always the best option for them or you.

Don’t feel like you have to do EVERYTHING. If there is another family member near by ask them for help, whether financial or physical. Look around your parish there might be someone there.

And this one is wierd, but look around to see if there is a pet therapy group near you. You 'd be suprised how fast the biggest surliest angriest meanest “old goat” turns to room temperature butter at the sight of a puppy or a kitten. There have been studies that animals relax highly agititated people.


#11

Before my MS got too bad to work, I was a nurse and worked in nursing homes. Out of the many that I worked at, there was only one that I would recommend to anyone. Most are just awful places. So nursing homes should ALWAYS be considered an absolutely last resort. And if it did come to that, RESEARCH, RESEARCH, RESEARCH! The financial issue is very important, too. If it comes down to Medicare/Medicaid paying for it, you don’t have a lot of choice where he gets placed, and that’s rarely a good thing.

The “stranger fear” is very common. Anything that takes him outside his day-to-day routine is going to be frightening.

This is an extremely good suggestion. Even just having a place to vent is a must. But these groups are great for knowing the resources in your community, also!

I agree, I would disconnect the stove when you’re gone. You definitely need to be discussing everything with his doctors. There again is a wonderful resource for suggestions and care.

You also might want to consider one of those “I’ve fallen and I can’t get up” buttons. While he’s still fairly aware, he might find himself needing help when alone and they can be a lifesaver. Obviously if he doesn’t understand the concept, it would be a waste of time, though.

As far as him not remembering that you’re married, not knowing the time of year, etc. you’re just going to have to get a thick skin. There may come a time when he gets downright nasty (some dementia patients do, some don’t). It’s very important to remember the man he was before the dementia set in, especially your husband. It can be very hard to see a parent get so ill. Here again, a support group can really come in handy, just to vent.

As far as the other siblings go, they’re just going to have to get their heads out of the sand about this. You and your husband need all the help you can get NOW. Perhaps you need to find a reason for the both of you to be out for an extended period of time (a whole day and evening) and “force” one of them to watch him. Maybe that will bring the point home a bit to see how he is for more than a couple of hours at a time.

I wish you all the best and you are all in my prayers! You are truly a blessing for your family!!

Good luck and God bless!!

Trish


#12

I can understand how difficult this must be for you to deal
with. My husband’s aunt has it too and we spend Friday
nights with her. We bring her dinner or take her out and then
just spend time talking to her. Her husband passed away
last February and she frequently asks us if he is in the
hospital or if he has died. It is hard sometimes because
she repeats the same stories and questions so much, but
she is a sweet lady and is so happy to see us. Being
newly married and dealing with this daily I think the support
group help would be a great idea. God Bless You!


#13

A few years ago I gave my mom and step dad a timer pill dispenser (my step-dad is legally blind and had a kidney transplant that requires pills to be taken at the same time daily for the rest of his life). There would be a clock on it that the alarm would go off and dispense the pills at the time they were needed to be taken. Maybe you can find one of those dispensers (I can’t remember where I bought it).


#14

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