My mom, 92, has advanced alz and my dad 94, is the primary caregiver. They live in a condo and dad has only recently agreed to some assistance, a companion who comes in for 3 hours one evening a week to bath my mom and do some chores. Mom has become extremely difficult and sometimes downright nasty. She is also very sneaky and many times refuses to take or spits out her meds. Dad has some health issues and we believe they are getting worse due to the situation but he absolutely refuses to consider any home companion, respite care or moving to a facility.
Any suggestions as to how to talk some sense into this man? He is very proud and after being married for 67 years, feels that mom is his responsiblity -- "for better or worse". We are truly at a loss.

Welcome to our forum. You will find lots of knowledgable, caring people here.

It is natural to fight the need for help, especially it seems for a man. He may feel that he just is letting her down. You could get the assistance of a doctor to tell him this is the next step in his caring for her. He doesn't have to stop taking care of her, but he needs help so he can still be there for her. The last thing you need is him getting worn out and then not being there at all. Rule number one in caregiving is take care of the caregiver first. If he wears out or gets sick, then she will need a lot more help. Maybe that explanation will help him to see it is not him that is inadequate but that this disease just requires additional help. It is not the same as "better or worse" with a healthy patient. If she had cancer, he wouldn't hesitate to get the help she needed. This is just the same thing, but she needs a different type of care.

We started with adult daycare a couple of times a week and this was enough to allow my mom time to go to the doctor, grocery store, etc. and she got a bit of a reprieve. We eventually needed to move him to an ALF, but she was able to keep him at home with her for quite a while by using ADC. If they are fine with someone coming in instead, you could try that but Mom always felt like she needed to leave the house when a helper came, and sometimes she just wanted to take a bath by herself for 10 minutes.

Sorry you had to join our "club." Hope you can find some help here.

Quite possibly she's his sole reason for living. And his love gives him stamina to continue caring. It's a nice love story. Maybe once she dies, he no longer has a reason to live. At 94, I'd be inclined to let him do exactly what he wants. And I'd give him all the moral and practical support I could. He wants his last act to be an act of love. Total love. He'd lay down his life for her. Admirable. Step back and observe this. Appreciate it. Marvel at it. --Jim

Welcome, Jan. I'm sorry for the situation that brought you here, but glad you found us.

I had much the same problem with my dad. I tried a combination of two approaches:

1. "Dad, I'm worried about you and your health. Just imagine how hard it would be for Mom if you got sick."

2. "I know you love Mom and want her to have the very best care. When she needs a doctor, you take her to one. When she needs her toenails cut, you take her to the podiatrist. (She's diabetic.) We're all a team to give her the very best care. I think it might be time to add some people to our team. You can be the quarterback."

It took several repetitions and then some heated discussions, but he finally decided it was best for Mom to get some more help.

Good luck with this. You're having to help your dad as well as your mom, and that can be tough. Believe me, I am there!

My wife and I are both 83, the WWII generation where we married for better or worse. A year ago when she started to wander at night I made the difficult decision to place her in an Alzheimer facility. It's a matter of mind over heart. My heart said no but my mind overruled.

I now live in a retirement community that has an Alzheimer unit where I can visit my wife every day. Life is better for both of us.

Jan,
Welcome to our website. As you have already read there are people that will help or give their experience.

Life is not fair! but when we have been dealt alzheimers it seems more unfair.

The decision for your dad and mother will be hard on all of you. If he is so set so be it but try some of Carolina' good ideas and you have the two gentlemen's words of wisdom.

Could you maybe get your dad to read some of this board? He is probably as your thread suggested, overloaded.

We all get that way and I am only 62 and it is my mother but I can tell you that your parents as a spouses of that many years, have a connection that is beautiful to behold.

Please help him as he needs someone to help him see that sharing the responsibility in no ways demishishes his love or shows he does not care properly for his lovely bride. He and she will live longer if he will share this responsiblity. Plus his quality will improve. As he sits and holds her hand he should allow someone else to administer primary care while he gives love.

May you have peace with this as you attempt to step in.

Sheryl

Dear Jan: Welcome to the Caregiver's Forum. I'm very glad you have found us.

I am an RN whose mother had frontotemporal dementia and my step-father has Alzheimer's Disease.

This is indeed a difficult situation and one that many of us encounter while traveling this path. How far away from your parents do you live? Are you near enough to monitor them closely or is this one of your challenges?

First; I would ask you if your mother's recent behavioral changes might be secondary to an undiagnosed "silent" urinary tract infection?

This is a very common occurrence in this patient population. The UTI is called "silent" because there are little to no symptoms. Usually there is no complaint of pain or burning nor is there an abnormal odor, etc.

Most of us know that our loved ones have such a silent UTI only because there are profound changes in behavior, etc. from their usual way of being. Once treated, the patient usually returns to usual baseline function. The changes caused by a UTI or any other infection can be quite profound.

The second thing I would ask you, is if your mother has a Neurologist who sees dementia patients as a routine part of his/her practice. Neuro is the gold standard for dementia management, especially when things become difficult. They are excellent at managing medication for dementia without over-medicating.

If there is no UTI or other physical cause for your mother's changes; and since the behaviors have not responded to lesser interventions, there are medications Neuro can prescribe which can be quite effective in their assistance.

Risperdal and Seroquel are the two most commonly prescribed for such challenges and can really bring a much better quality of life to the patient. My mother's behaviors were dreadful. Neuro prescribed Rispserdal and the difference was dramatic. Every patient responds differently to medication, but my mother had no side effects and her terrific response to the medication made her life much better. Imagine how awful it feels to live inside their heads.

As for your questions regarding your elderly father. You are very sensitive to the dynamics as they exist which is a very good thing.

Yes, I would think that the tremendous ongoing 24/7 stress would possibly be more than likely a contributing factor in your father's declining condition.

Even those of us who are healthy and much younger suffer from profound stress, overwhelming exhaustion and burnout. It is undoubtedly magnified for your father.

Another thought I would bring up, is that at your father's advanced age, despite the fact he is alert and oriented and able bodied; is the probability that his judgment and reasoning is not at all what it used to be, especially under the circumstances. Couple that with the stress and exhaustion, it may be very difficult to process things clearly and have good insight into his own needs and the severity of the situation.

While there are daycare sites that are available for those with dementia, it sounds as though at this point it would not be a viable resource for your mother. However, it is a choice that is usually available in most communities.

If you live near enough, making a confidential consulative appointment with your father's doctor and giving input for asking for his/her assistance may be helpful. The primary care physician may want to note the "changes" in your Dad's health and may "prescribe" certain interventions for him such as a daytime aide for a certain number of hours per day.

If your father has a severe negative health occurrence then he would not be able to be there for his beloved wife.

I do have to tell you that I too faced similar circumstances with both of my parents. I tried everything I could think of to gain the cooperation of Mom and Dad to get assistance into the house.

They wouldn't budge. The first issue was having a stranger in the house. The second issue was the cost of doing something like that.

So, I manipulated the situation. I looked and looked for just the right sort of aide that could do light housekeeping and Mom's care needs (bathing, shampoos, changing beds, etc.); and she also fixed two meals per day.

I hand picked the person not only for her experience and capability but for her personality and intelligence to be able to win my parents over.

I then had my family go with me to the folks. I brought dessert and made a big deal of a "present" I had brought and it was a big surprise.

I had made a card with a certificate of the gift of a "housekeeper" for three months. A gift from me to them, because they have worked so hard for so long, I wanted to give them some time off.

It was presented with big smiles, hand clapping and much joy from all guests there. Everyone had been clued in. The folks could not turn away the "gift."

The aide was clued in and we formatted a winning plan together and kept in frequent touch. The aide spent time wooing and winning over the parents. She did a terrific job and was SO pleasant.

The folks had an adjustment period. They felt awkward and out of sorts for about two weeks. Soon, they were looking forward to the aides being there.

By the end of the three months they wouldn't hear of not having her. They LOVED the person and the relief she brought to them.

I was writing the checks for the bills so I utilized a "therapeutic fib" and when asked what she cost, I hugely reduced the amount in words. They never knew. I never brought up cost and if they did, I'd be light, non-committal and refocused the discussion onto something else.

Sometimes there comes a time when all else fails and boundaries need to be drawn. This is much more difficult of course. Despite all efforts, if all is refused and they are not a danger to themselves or others, then there are times we must wait for the other shoe to drop. NOT a happy thought, but I have been there too. It is difficult to do this.

If there is an existing danger with safety, meds, nutrition, self-care, etc.; and you are extremely concerned, you may want to call Adult Protective Services. They will hold your name confidential and make a home visit. APS doesn't have many teeth, but they are a helping agency and there is no charge.

I would also suggest, if you would like, to go to the forum named, "Questions for the Care Consultant." You will find this forum on the grid when you log in to click onto the forums.

The Care Consultants are highly educated social workers who are employed by the Alz's Assn and they specialize in dementia issues. They can often give excellent input and ideas.

We are glad to have you amongst us and hope that you are soon able to find an answer or even part of an answer for the issues you are dealing with.

Please let us know how you are and how things are going. We will be thinking of you.

Johanna C.

Hi Jan

Welcome to this message board..

67 years together..

how blessed your parents have been..and you also..my friend.

I so loved JIm broede's post to you....I feel his post has much wisdom in it..

your father needs to feel..he knows what is best for your mom's care..may you consider not taking..the choices he has made ..or will make..away from him.

you know your parents are fragile..yet Life is fragile..none of us know what tomorrow will bring..we all take one day at a time...

to be 92 and 94 years of age..they have been blessed to be together..still

may you consider..letting your father know..in your own way....he may need a little more help and that you are there for him..when he decides it is necessary..

you know your parents best..and may you find the right words..at the right moment to share your feelings from your heart ..to your fathers..he Loves you..he will listen..and then you need to be a good listener to what..he says..Namaste Love Rosie

Hello...I 2 had parents that had been married for 59 yrs. They lived in Ok and I in TX, Mom got sick last summer and had to have emergency surgery, well that was the beginning of the end, she really took a dive after 10 days in ICU, a ventilator, fedding tube, morphine and god only knows what else. So after many discussions with him he decided it would be best to move here, he was afraid it would send her over the edge and she might die, but he knew he could no longer do it on his own.

So in Dec we moved him here to an appt next door to me and then brought her home from SNF. All was going well, we had an aide come for a few hours a day, but of course that irritated him because of the cost. Well in Jan he got punemonia( he had copd, emphysemia, thyroid and a lot of little things) so he was put in the hosp and 3 weeks later he just couldn't fight it anymore, he passed on Feb 17th.

So now I had Mom, which for 3 months we kept the 2 apt thing, but that just got to be too hard on me and she kept looking for him everyday. So now we have a house together and it has been ok. I have an aide that stays during the day so I can work, but then on Wed I was called, her BP was 212/125 and she had a low grade temp. So I came home and called an ambulance knowing I could not get her up and to the hosp...well she had a severe UTI with a lot of Ecoli(whatever that means) they are giving her antibiotics thru an IV and she is at SNF again. I have found a wonderful residential home that houses 4 ppl. It is so small and perfect and the cost is so much lower than a facility. I am having a little difficulty realizing she will probably never live with me again and I only hope it is the best for both of us. She needs to be somewhere that they are more in tune with these infections, caz I have no idea how long she had had it....It is really hard to think I am losing both parents in 1 yr, I would have never dreamed a year ago this would be going on.

So tell DD that taking care of her is a huge responsibilty and his health is just as important as hers. I only wish I would have realized this sooner and not neglected him for taking care of her.

My prayers are with you with whatever decisions you can make.