My Dad (94) wants his wife (85) to be his sole caregiver but he's uncooperative and jealous. Advice?

I didn't think hospice charged

When old age problems pull our loved ones down, it is always a heart rending situation to know what to do and what not to do for their comfort, and continue to choose reasonable balanced care for all individual family situations. The cost of good health care is expensive. When one is caught between a rock and a hard spot when trying to balance out good care for their loved ones, while balancing the check book to pay for it many times brings forth major decisions regarding just which way to go and what to do for all involved ones best interests. Time, money, contacts with organizations, doctors, rest homes and other avenues demanding our attention to check out for the best decisions to care for our loved ones, looms in our path for many times immediate attention. Quickly go to as many organizations and persons in the know to help you find the right answers. I at present am facing a similar prospect of what am I going to do if our near 60 year old son goes down with his health, as he is the one keeping my husband here in the home for his best interests. I am main caregiver, but cannot get any help from medicaid, due to fine point line of not qualifying for any help. So the only thing that appears left for me to do is look for a care center that will put a roof over his head while working through division of assets. Then after a month and he qualifies for medicaid through that action, it appears he could be brought back home and some government help could be supplied to let him continue to stay here at home for me to care for, which I so want to do. He is bed fast, with diabetes, congestive heart failure, some short term memory problems, sleep apnae,has many others issues that need surgery, but is not a candidate for surgery. He is doing quite well at home and is basically easy to care for at home. We have him monitored by the nurse available out of our local hospital, and the doctor visits him in accord to medicare regulations, even though we live out in the country on gravel roads. He has been bed fast for nearly two years now, and no bed sores, do to strict over sight and good skin care. Incontinent with bowls, and has urine bag. To be forced to drag him into a care center nearly breaks my heart to think about, for I know from experience with my mother, my husband and myself who have had to use the services of care centers in the past. There is just not enough people to give one on one care to the best of the needs of individuals who are bed fast or have to be in bed any length of time, many times they are put in chairs and left for hours due to the fact it takes two people to move from bed to chair. That is entirely to long of time for many persons, due to their individual needs. It would nearly kill my husband to move him more than absolutely necessary. The bed care at home has been doing well for my husband, who can still feed himself in most cases if he does not go to sleep in between times then of course he must be helped to finish up his meal. It rings my heart to see our son having to carry such a load, for we use $15.00 per hour help rolling him to make sure his skin is keep clean and in good tone. This is twice a day, and more if needed. I have osteoporosis and must save on my back is why I have help twice a day to do the weighty thing. I then can care for all of the other needs, laundry, food preparation etc. as long as it is no heavy lifting. I am 81 year old and my husband will be 81 come Aug. of this year. No one knows what the next day brings, but we so hope he can stay in the home as long as possible. There is just not enough income from meager social security to care for his needs at home without our son just supporting us. It grieves me at times to see our son struggling to continue to try and care for us, for he works in timber and tree trimming, one of the most dangerous jobs, and has to do so much more of it to help us. It is not balanced to have to do it this way, but it is happening. It does not seem fair that it should fall so heavy on him. His line of work is hard work, and it looks like it is taking his toll on him. We do not choose to use hospice, for they do things in different manner than we wish to do. We will save that to the last , if necessary. Plus, my husband may live for years, so that is not a way we choose to even sample out for money reasons. If any readers know of any organizations that are able to help people in this kind of financial bind trying to care for their loved one at home, please let me know.I wish to send love to all of you who are concerned for your loved ones and are doing the best you can to care for them. I know it is hard. Bless you all for continuing to try and make a way out for the best interests of your families. Many hugs go to all of you. joylee

I think one thing that has to be done is to take your Mom to support groups where she can listen to and talk to other people who understand, because ultimately, she has to be strong enough to stop allowing him to get away with this. She can seek a social worker or a therapist. I'm not pleased that the community where they live is not doing more in the interests of your Mom's health. Usually there's guilt - so she has to be guided around that and take little steps. Your Dad probably has tremendous fear, coupled with pain that he might not be able to express. He possibly needs to have a care supervisor help the staff caregiver for a few days, and to use a lot of empathy and encouraging and attaboys. If this is dementia related to Parkinsons, the doctor must be involved because it can be the nastiest kind of dementia - no filter, spontaneous behaviors. I would suggest that they live separately if it's affordable - her in one are and him in memory care. That's where this is heading. Good luck.

I am coming back with some more thoughts and questions: Does your step mom have power of attorney for Dad, or a trust or an elder care lawyer? All of these could be very helpful, and important at this age. Wills done, care needs decided for the future, like Do Not Resuscitate? Does she have medical POA? Who handles finances? If none of this has been done, it's important to encourage it, for both, while they can make decisions and sign papers. It sounds like they are now in a facility but in the 'independent living' part where they have their own apt and are basically self care? Does the facility have memory care for dementia, should that be needed? Do they have enough asses for hiring in extra help if there is no memory care? Most A.L. set ups will allow private caregivers to be hired to work in the apt and help with caregiving outside the realm of the A.L. policies....to keep the couple together. If this stuff is NOT done, I would have a heart to heart with your step Mom about how Dad needs help and you want to 'assist' her, but not take away her authority in anything. If Dad will agree to go with her to an elder care attorney to safeguard their assets, future and desires, I would have a phone call or visit with this attorney and let it be known that Mom is with it, but perhaps Dad is not, and he's the one who may need more help to start with...just some history. And same with Dr. IF you do not have a POA for either of them, and neither does step Mom for Dad, these people will not talk to you, but they will allow you to talk with them to give history, perceptions, ideas. They just cannot share medical or legal info back to you without parents permission. I care for my folks and I am out of town too, so I 'get' how difficult this is. And I am all alone in this as it sounds like you are, with most of the siblings not involved. My only brother is now dead, so there is only me, but I have two daughters who are really great help to me. One an RN and one has a masters in counseling....so educated in various helpful ways too! As other suggestions were offered, you need to be in touch with some contact people in their facility...even if you need step Mom to give permission for social worker or director or supervisory people to talk to you. It's the only way you can really help from afar! Tell step Mom you want to help make it easier for her, but if she wants to be in charge of decisions you want her to continue with that....as it's touchy if a spouse thinks a kid is trying to take over everything. And, as someone said, be sure all step mom's arrangements are set too....and her family is assisting her as well, if there are family members in her life. This will only get harder, and no one knows which of these elderly are going to last past the other one. There will be help needed no matter what. Sounds like Dad will need more than step Mom, but anything can happen suddenly at these ages so a plan is needed. Maybe Dad can understand that? That no one wants to 'control' him, but just to help with making sure that good plans are in place. My parents thought they would live together in their own home forever. I foolishly promised that....without understanding about dementia or what havoc it causes to personalities. My dad was the educated one, who took care of everything and all bills and finances etc. He catered to my Mom. Consequently, she didn't know how to step up and become the one in charge, pay the bills, deal with the personality changes or even to cook for him! He could see all that, so he had them sign to make me their trustee and POA....but that's caused difficulties between Mom and I, because she wants to run the show with her mouth, even though her head has no good ideas! And now she also is diagnosed with Altzheimer's and it makes it even harder, because she fights all decisions about herself, insisting she is fine, and she's never leaving her house and she is never moving into a facility like her husband is in...and family should be there constantly for her.....no one else! I thank the Lord I do have that elder care attorney and a case manager down there, and the good relationship I have with the people in Dad's memory care unit, who tell me the truth of how he's doing. Mom can only critique and has no ability to think of his needs.....only how it all related to her needs...even down to what he gets to eat. It's all about whether or not SHE would like it!! Anyhow....it is just hard to be the daughter, and the coordinator of care, and allow the parents their own decision making to their abilities to handle, but yet have to push them into SAFE decisions for them. So just wanted to add some of those other things I've had to deal with ......

Good for you, Oregongirl!

It is a tough situation. But, your mom must go for help. So what if he becomes angry. He will get over it. I am happy to hear that you have such a good relationship with your step mom. I have two step sons and the one son and his wife literally hate me. The other son wrote me a letter last week short but to the point. He thanked me for taking care of his dad. He lives in Germany and cannot afford to visit his dad. He speaks English, so I am going to start writing to him so he can share with the rest of the family how his dad is doing. There is always something that is hard to deal with when there are step kids. I would make sure that your step mom is going to be taken care of after your dad passes. Thats number one. But, tell your step mom not to feel guilty about forcing help on your dad. Eventually, he will understand. I will pray for you. God Bless

At age 85, she's already considered an elder herself and simply cannot and SHOULD not be a full-time caregiver. HE can't make good decisions like this!

I went through this with my parents when both lived at home. It will help to understand that dementia, YES....does come with Parkinson's sometimes, later in the disease. Dementia does have stages that involve paranoia, and my Dad also thought when Mom went to the grocery store, she was actually seeing a 'boy friend'....or that someone was going to try to steal their car etc. Then, understand (and it took me a LONG time to come to terms with this one!) once there is dementia, no matter how educated or how logical someone with dementia sounds or used to be....there is no rational discussion to be had, because their brain no longer works properly! So, it may be that Dad expects his wife to be his caretaker, because he remembers that he cared for his first wife just fine until she died....BUT he is not getting what his age was then, and what his wife's age is now, or any differences in health of various people. Then, she tries to get help for herself, and his paranoia sets in, and perhaps his change in daily routine indicates some depression setting in as he realizes that he can no longer function as he used to. Perhaps a way to try to get by together for a bit longer is for her to say she needs a helper for HER so SHE can help him more....and get a female to come in to 'look like' she's helping with housework etc, but that person could work at befriending your Dad and could slowly start to offer to help him with things? This worked very well with my parents. We agreed, Dad and I, that MOM needed help and we would try hiring someone for a MONTH, as a trial. Mom and I knew that this person was really a caregiver for Dad....but the gal was so skilled, that she spent time talking to Dad about their common love for knitting and other things....and she would stop to help him fix the remote and other small things...in between 'appearing' to be helping with housework etc ....that at the end of a month, she was Dad's friend and he thought she'd been coming there forever...and she was able to help him shower, dress and do all manner of things that he would refuse to do if Mom wanted him to do. The other option, if it is dementia and it gets worse, is to move Dad into memory care, or even a day care program outside the facility that is geared for dementia behaviors, if memory care is not under their same roof. Day care programs have little to no cost, and they even come pick up the persons attending, and bring them back. In AZ they are about 6 hours long, which gives Mom a break for her own self or to do other things she must do. And I also agree with someone above who mentioned, that it may be time for MD evaluation and what I call 'happy pills'. My parents MD has been helpful to add in anti anxiety meds or anti depressant meds and sell them as something that would help appetite or help the brain work better....not lies, as some of these meds do help with those problems as well as their primary reasons for being given. If you are not sure what's up with Dad, the doctor can order a Neuro Psych eval and it would be paid for by Medicare. It will diagnose dementia or Alzheimer's etc and the psychologist who does the eval will make recommendations as to treatments, safety guidelines etc. This eval could be used to declare him incompetent to handle his own affairs and thus invoke a power of attorney over him so you or his wife would have authority to make decisions he didn't like...but would keep him safe. When elders get too limited, the main focus needs to change from keeping them happy to keeping them SAFE! Again, a lesson that took me a LONG TIME personally to come to terms with.... It's very hard. Dealing with my two parents and their health care needs at 93 yrs old and 89 yrs old....and both with dementias....has been the hardest thing ever for me. I am a retired RN and 71 yrs old myself.

I hope you will step in to help your stepmom get them both into assisted living. Please try to keep in mind that dad is not himself and, unfortunately, should NOT have a vote. I know that's hard to hear, but it's the truth. And realize that you probably know only half of it.

Take a few days and go there. Take stepmom with to talk to the facility. Help her move and get situated. You. Be the heavy, as hard as that's going to be. "Dad, enough! Stepmom needs help. This is the way it's going to be. Period."

Then, when it's all over, collapse into a chair and cry. But, be sure to tuck in your angel wings or they'll get wrinkled.

This is an all too common situation. It's difficult to see your parents' lives go downhill this way. It sounds like your dad probably has some depression along with the dementia and Parkinson's. I would speak with his doctor, especially about any medications he's on or perhaps should be on. If their not using any of the services the assisted living community offers, is he taking his medications properly? I would also ask the staff there to help - not necessarily that they start services which he is refusing, but that they make the suggestion to start services. If they've lived there long enough he should have some connections.
As for your mom, just like the other comments above, encourage her to stay as positive as possible in her outlook and interactions with your dad, and to get out and enjoy what the community offers.

I wish you all the best!

I am 65 and I think I am a sole care taker and I am pooped its unrealistic for your mom to even try get her help for him and her or all the family help them just don't call it help I have already told my husband he better be helpful for me and if I need a helper or I will have no choose but get himin a home for his care since there bothold a diffedifferent living place might be for couple care there chooses are always hard but they do get done happily by the elderly every day so good luck and peace

bmj, your post wasn't too long at all and you have so much support and understanding here. We would wish things to be so different for our parents. right? Do you talk to the staff/director much, or is all your news from dad's wife? The staff surely have an approach for all sorts of situations. Also, when wife needs help it should probably be women :) for understandable reasons. What does dad's doctor say? Maybe he could get a bit more meds for what's not only coming out as impatience or anger, but is probably anxiety as well. Seems he'd do better with a bit more authority figure input and not just his wife, as you say she can only handle so much. The staff should be supporting her coping strategy. Best wishes to you and them.

She is too old to manage this situation, and it will not be a satisfactory outcome for either of them. I agree with the previous poster, that his anger will escalate due to his decline and limitations and if he's getting dementia, on top of parkinson, well that's not easy to manage in itself for well trained personal care staff. Seek out some additional help - perhaps for bathing, cleaning the house, not sure how meals are handled there but her company alone will be a comfort to him. Try talking to your mother and position it that she is his primary support but that she will have some additional help/support. That message will flow to him, he may struggle with it but he needs to lose that battle. Ultimately, with extra care, they both get what they need and want. You will have to step in to make it happen, but be comforted knowing you are doing the best thing to help keep them independent as long as possible.

What his wife can't do is change him or force him into doing anything. What she can do is try to have a life in their facility. Encourage her to participate in activities to get out of the apartment.

Your dad is angry because of his decline and limitations. It's not unusual for this kind of anger to extend to the closest person. In this case, your stepmom. She doesn't have to run around all day everyday but it would be good for her to put down some roots in the community and make some friends.