I've been caring for my parents for 14 months in their home with my husband and daughters help. We have a home next door but stay together as they can't be left alone. My mother has spent two trips; 2 weeks and 3 weeks in a behavioral unit for getting violent. She's medicated and not drugged all up and things are better. My father was staying angry all the time due to not being able to drive and it affected how he treated everyone. I tried to talk him and he was just cruel. He was in a behavioral unit for a week and now too takes medication and is better. Mom is a wanderer, thinking she has a house somewhere else, brand new too! Well I promised my father that I wouldn't put him in a home. I honestly believed we could care for them.
Dad had normal pressure hydocephalus, plus both have Alz. Dad may have Parkinson's too. They just tried him on medication and we are waiting to see how it goes. The problem that started my biggest nightmare was we found out that Dad could walk, but didn't want to work at it. He felt he would fall too. He was afraid to. It takes a lot out of him and takes forever to get anywhere walking. We had gotten a wheel chair and he sure prefers it to getting to restroom, as he fears he won't make it on time. He hasn't in the past. He had shunt surgery and he is also getting that adjusted and we had hoped it would help with his balance. Just under 2 weeks ago, we found out Dad could walk, thinking he couldn't at all, and it turned my world upside down. My husband felt betrayed. From that point forward he has gotten angrier every day. The way he speaks to me is without any compassion at all for what I'm going through. Getting anything done medically takes forever it seems. I owe my folks the respect and time to help them to see if things can get better. Dad didn't mean to deceive anyone. He believed it due to what the regular MD said, "with Parkinson's they lack the inertia to get going." He said Dad wasn't lazy it's the disease and very common. This new information didn't change my husband's mind.
Husband has been pushing for a nursing home since. Tonight he told me that come the end of this month, he's leaving and going home. All of this has been heartbreaking for me. He has given me an ultimatum. He's never done this before and I would never give him one. Plus taking care of my parents is killing us both according to him. It's stressful and he gave that up when he left his parents. He doesn't want this anymore. I don't have the ability to get them in a home in this short of time. I was going to an attorney for guardianship and it's a long process. I've been married to my husband for 27 years. Up until that one day, he was kind and understanding. There's no compromise, no other way for him. If I put my parents in a home, where will I live? Go back to my husband who abandoned me when I needed him most? My heart is beyond broken. We came into this knowing it would not be easy. I am supposed to leave my parents and be okay with them being unable to care for themselves? I don't believe it is time for a memory unit care yet. Why am I not allowed a decision like this and he makes it? Hey, I know my parents are afraid. I am afraid too. You marry through thick and thin and you don't run away. I took care of his parents. He SO appreciated that. His mother was 8 hours away. We spent a lot of time travelling back and forth. She would call me at work, needing medical equipment that medicare wouldn't pay for. My husband talked to her and then told her to speak to me. He did not tell me the nature of the call. When I took the phone, she was crying. It was wounding her pride and very hard for her to ask for help. I wish my husband wouldn't have put her through this again and just told me what she wanted. I gave her my credit card info and told her never to go without oxygen. She was rationing herself and had very little life left. I would give her anything she needed. I loved her, of course. She passed on and I handled all the funeral arrangements taking care of everything even though she had 3 children there.
His grandmother was next. We offered to let her stay in our home, but she had a son who was very dangerous and had spent more time in prison than out. I had a small child, my daughter at home. He had hurt other children (he was a sexual predator.) So we had the condition that while she could see this son, it could not happen in our home and he could not know our address. This condition made her choose a nursing home. She was there for many years. I went there at lunch time, often bringing her the favorite foods she loved. After work I'd take my daughter to visit also. Before she died, she told me that she loved me more than her own and that no one had ever cared for like I did. She did not want to burden anyone with a burial, and said to just cremate her. She had a plot though. I had no problem, and it was not a burden to pay for a funeral and she lies beside her husband (whom died long before I had met her.)
His father fell ill while his grandmother was in the home. He couldn't see and kept putting his car in ditches. I had to take his keys. My husband couldn't do it. When his sister passed (my husband's aunt) the relatives not under his father went to her place and just took what they wanted. He was very bothered by this, and he only brought 3 items from there. All three acquired to give to me. He knew I loved roses and there was an antique lamp with beautiful roses on it, a marble table and antique chair setting off the display. He gave me these items for helping him so much. I'd go to his home too at lunch and feed him after Grandma, then again after work, same thing. I cut his hair, trimmed his beard, gave him pedicures (he was diabetic) and cleaned, cooked and took care of everything. Then I'd go home for what was left of the evening to tend to my own family where my husband helped at home. I helped my father-in-law bury his sister and took him to doctors, fired some when they refused to listen, saving his life for a time, as he was having mini-strokes and the doctor wasn't listening. His father really didn't care for me before he began having problems. But he grew to love me while I cared for him and I never missed one day of being there for him or grandmother. He was frugal and saved a bit. I asked him while going over his final arrangements with him (the children or spouses need to make sure they are aware of and taking care to get wills, final wishes, where precious items go to whom, etc,) to find his wishes, if I could buy extra plots so we could all be buried next to each other. He agreed, and I was even able to have 2 for my parents, 2 for my daughter (she may marry one day) and 2 for my husband and myself with the estate money. All his children were offered a plot with their spouses. None wanted to consider their own time for any kind of burial and declined the offer. His words were to not compensate anyone who did not want one with cash instead. He knew I would want 6 besides his, then whatever his daughter wanted. He had a step son he raised as his own. The biological father never in the picture and even took the family last name. But when joining the military changed his name to his biological father's and sought him out. My father-in-law deeply hurt, left him out of the will. I knew it would hurt my husband's brother. I tried to get him to reconsider. In the end, we couldn't bear it and so we gave his brother a sizable sum from our share and he never knew he was disinherited. That was something else I had asked my father-in-law if we could do instead and he did not have a problem with it. When he passed, again I took care of the arrangements. I cared for both him and my husband's grandmother (mother's side - they had divorced while my husband was a teen) for years.
I owned and operated a mortgage company, and was able to get away to do all these things also. But I sure worked many hours. And now I am 56. But since I was 20 years old, I have had crohns disease, fibromyalgia and as the years passed many other debilitating diseases/syndromes associated with Crohns. There are 20 common ones that you eventually acquire. I got all but one, so 19 more illnesses that have stayed with me. I've been near death a few times and only had remission once while pregnant with my only child. I've had over 20 surgeries. This is why I was self-employed. I could get away with being my own boss. I hid my illness though from clients and employees. I didn't want people to know, as I didn't want them asking about
me all the time, as I tried to keep the pain in the back of my mind to push through the day. Doctors did not expect me to live past the age of 40. Working became harder as the years passed. So after the health professionals had encouraged me for many years to go on Social Security Disability, I finally relented and sold my business.
By the end of the day, I am exhausted, but still have nights where my parents are waking me up for many different, often strange reasons. So, while my husband is working now for 35 years at the Post Office, but carries mail in the heat here in Texas, he has 5 more to max out his benefits. He'd come home to my parents house and insist I then rest and he'd cook. I hired help though for cleaning and rented my daughter's room out (my daughter was naturally the ultimate okay on it) to a friend who eats dinner with us and does the dishes and heavy cleaning once a week for her rent and food for dinner. She buys her own lunch and breakfast and anything else she needs. One major problem is my health and my husband cites this in his reasoning. But frankly, he stresses me out far more than my parents with his constant behavior of discontent and says this is killing him too. But he mainly does dinner and yard work. I do not understand why he won't give me time to find an alternative to him doing this and keep my folks in their home.
Recently I got a psychiatrist for both my parents to make sure their meds from psychosis are kept up. The behavioral units are necessary for large changes, as this is the safest way for them, due to reactions to meds that would need addressing immediately and getting the right therapeutic dose for them. Not a lot could be done this past week due to the holiday. But the psychiatrist was going to help me put my parents in a day program, with one of the behavioral units. They'd be picked up by their bus in the morning and brought home for dinner. When I told my husband, he said he didn't see how that would get us in our home. But this would have allowed me to free up my days so I could handle the evenings and prepare dinner taking this off my husband. My husband hates controversy and naturally dementia ends up causing quite a bit. None of his family had this type of illness, so there was a large learning curve in how to handle situations. I also look for resources and all information relating to their illness constantly when I am not doing around the house. It does consume my life. I can't deny that. I do worry about
my husband's health. I thought I was doing fairly well at finding solutions as they were needed. I have two brothers, but neither want to help or even visit my parents. My daughter, now 24, helps with little things during the day. She is able to get away and have evenings out with friends. We are very close. She is also close to her father as well. What is to come, has to be handled by me in a way not to cause any problems between her and her father. She has a heart of gold. I thought my husband did too though. He grew up with alcoholic parents constantly fighting. He said, "I got away from this growing up and will not live again like that (referring to the verbal arguments my parents have.) I won't watch this kill you or let it kill me! You are not moving fast enough to put them in a home and I am leaving the end of this month." He's 58. He's said in the past that he didn't want to live his retirement years taking care of my parents.
In all fairness, he has a valid point somewhat about
my health and his. He has been struggling with his blood pressure getting too high and we both see our own doctors today. For my part, I've had to push past pain and illness all my life. Even when I came home, I was unable not to stay productive. I have several large websites I built for when he retires too so we have the money. I put in years of 18 hour days for him on that. I could not continue, however, running them and taking care of parents. So again, my good friend who is helping me, is someone who has worked for the companies for awhile, so she is able to tend to what I did mostly. I still must handle problems and fix things though. But that's okay. While taking care of my parents, I see now that I will never go back to 18 hour days. It is not worth the time I missed with husband and daughter. When I do go back, I'll take care of the businesses with more balance.
I apologize for the length of this post. But feel I must tell my husband's side as much as I understand of it. We don't usually argue and have enjoyed a wonderful marriage until now ... I know him well enough to know for certain he'll leave me before August begins. Oh, also during our marriage as problems would come up, it always fell to me to fix things, and he trusted I would as well. Those though were problems that were stressful and did have an effect on my health. I try to stay strong, but fear losing him will break me. He has been confiding in my daughter. She "gets" why he is doing this. I don't think she understands what it is and will do to me. If I allow her to see the damage he's doing, it could put her in the middle and I do not want that either. Getting my parents in a day program and getting guardianship is a priority right now. Making them feel safe, getting dental work for them, cataract surgery for dad and new glasses for both as well as continuing to find out what dad needs diagnostically is also a priority.
I wouldn't be being honest if I did not admit that I believe my husband owes me for all I did for his family while I still had the same health issues as now. It's unfair to use my health issues and I've told him. He said if he knew that while caring for his family I suffered, he couldn't have wanted me to care for them. He seems to deny knowing I had health issues back then when it was so evident. I can push myself. I do hide pain, just my way of coping I suppose and have been this way all my life. It brings me joy to put a smile on the faces of the generation that came before us - both our families. I am still very much in love with my husband and trust has never been an issue for either of us ... until now. After he gave this ultimatum, I considered even if I could get them in a home before the end of the month, that he would make me regret my decision for the rest of my life and while we
open the door to ultimatums, will our future hold more. I just think ultimatums ruin trust and are unfair. He's made up his mind. He really won't budge or compromise. I thought he loved my parents and would never have thought he'd do this. I had no idea and am blindsided by our marriage having an expiration date. He knows this too. I'm old fashioned and believe the man is the head of the household. But my faith believes that with that final say so a man has, he is not supposed to use that power to harm his wife. It comes with a responsibility to not harm me as it will.
One time a long time ago he had a friend living with us. The guy was a pig. He could not ask him to leave and I insisted many times, saying it was going to ruin our marriage. Well, it became apparent that he wouldn't do anything. It was his personality to avoid conflict. I almost did leave him. But I remembered he hadn't changed from the man I married. So, I compromised, we bought another home, moved in and let his friend take over the mortgage on that house. We didn't make a dime or get a down payment or deposit. He assumed the loan is all. He also defaulted. Lost the house and we nearly had to pay a lot of money for nothing. That's a poor comparison, especially since his friend was young and healthy and didn't want to work. My parents cannot help they are sick. It's not their fault.
I dread the days ahead and am truly am heartbroken. This will end our marriage. I don't understand how he can do this. I am not sticking my head in the sand. I believe in what I am doing and my personal religious beliefs while against divorce are not for me abandoning my parents either. I am very much in shock tonight too. I know it is not easy for him. I know it isnt easy for the original poster here or others who marry into this. Remember please though, that we want to afford our parents dignity and the ability to have semblance of independence in being in their own home for as long as possible. Hospice will come later and we have home health care for therapy 2 times a week and a nurse comes once to check them each week. I'd think the doctor would order more care if needed, I confide in all their doctors the extent of their dementia. These health issues that our parents have shouldn't destroy a marriage. I guess the sad truth is they obviously do. If you push your spouse into doing something they are not ready to do, I can see that as pretty harmful to a marriage too!
I googled my problem and it led me to this thread. We are becoming so used to trying to find answers online. While there are SO many good hearted and understanding people to network with, I don't see an answer to my problem. I am willing to listen to advice though. My husband needs a good shot of compassion. Too bad that's not available by RX. I have to admit besides being extremely hurt I also am angry. I just pray the anger doesn't get worse within me. At least with pain, you don't affect others as you would if you were angry. I fear too that things are going to get much harder for me emotionally. I'll miss those moments I've had for 27 years of that shoulder to lean on. A marriage dying is just as traumatic as someone dying. How can anyone do this to the person they love?
I hope I have written too my husband's position fairly here. It hasn't been a picnic for him; but we've still had some great times together as we melded the family into 5. Even that is not easy to do as I feel this betrayal. I hope I can show to others too that if their spouse is going through this with them and they are in my husband's position, that leaving is not the answer. Love should prevail. Marriages, nor people, should be disposable. Family is important and we have a responsibility to our parents and our immediate family. Work it out. In the long run, after those whom we love pass on, there's time for healing and getting your lives back to where they were. Don't ruin that trust or take it for granted. Don't throw away a marriage when there are alternatives. There are compromises if you find yourself in the position of my husband. And PLEASE ABOVE ALL, REMEMBER DEMENTIA IS VERY UNKIND! His or her parents do not mean to be a problem. They truly are afraid and need care and understanding. The decision to place anyone permanently in a nursing home/memory care is one that is very final. However, when the time comes to do so, they can come out and visit in most cases. I just cannot understand the mindset of taking away every ounce of independence they may have left with such a drastic decision. I don't believe in breaking children's spirits either and they revert to child like behavior. I can't bring myself to break their spirits at this time and I know my parents well enough, it will do just that! Men have a hard time accepting losing the ability to drive. At this time in any person who has dementia, they are often lost in their minds and afraid. They need love and understanding. You can't do everything, but there are ways to get help! Look for solutions that is agreeable to both in a marriage. Sometimes we must put others before ourselves. It should not be something you have to regret doing either. One party of a marriage has the ability to make things 10 times worse by making a choice that considers themselves only and being so rigid that you can't work things out. It's nice to have many years of love and devotion with small problems compared to a parent with dementia. Yes they can be cruel, but they are not responsible, it's a disease causing pain to everyone. Be thankful for the years you glided through compared to this and know you both can get through it together. I have lost that chance and want to warn others not to the same. I stand to lose a great deal. But we together made the decision to care for them. It's unfair and selfish for one to quit. As the baby boomers aged, the health care industry came up with many types of solutions and alternatives. Find one everyone can live with. Holding a person's life in your hands, like you did with your own children is not that different when a parent has dementia. If your child was upset and scared and lashed out, would you ship them off somewhere? I wouldn't. I don't see how this is different.
Post Edited (TexasTornado Deb) : 7/9/2013 9:06:22 AM (GMT-6)