Number one complaint about how being a caregiver for an elderly parent has affected your relationship with your spouse or partner?

I am totally blown away by the stories here. The situations may be different but the common thread is the sheer strength of each and every poster. No one would ask to live with these stressful conditions; navigating a relationship is hard enough these days without the demands imposed by caregiving. Plus so many of us are dealing with an ill-tempered and demanding relative on a daily basis, even if he or she is not living with us.

Having MIL live with us for the past three years has changed the whole dynamics of my home life - before she arrived, I'd be so happy to arrive home and walk in the door. Instead, now, of having the sense of being "home sweet home," you feel a rush of tension and tightness in your body as soon as you arrive at the front door because you know you are going to be met first thing with a complaint or demand for help with something. MIL takes up so much space, emotionally and physically!

And I have often ended up resenting my spouse because we have had to rearrange our lives to such a tremendous degree. I would be so happy right now to get my hands on a vegetable that is not steamed to death so my toothless mother-in-law can eat.

Try to keep your sense of humor, that can be so good for your health and mental well-being. When I find one thing funny about the situation, it makes me realize that humor will keep me sane in this otherwise insane world I have been thrown into.

I write this as I always have from the patients perspective. There are a couple of things I want Caregivers and those that love them a few things to think about. Now that ALZ/Dementia or other serious illness has entered your lives. Think about how you want to handle things when you become the patient. I encourage you to start by taking action to put your legal affairs in order perhaps a Trust, DPOA, Medical Directive, and plain talk with your DW/DH about the treatment you want to have and don't want to have. We did all of these things. We also shared these thoughts with all of our adult children. We have one that is still in elementary school. I was diagnosed with Dementia/Early Onset Alz doctor is still unsure about whether it is ALZ or not, for 2 years. I am in my late 50's, my DW is in her early 50's. I am still able to drive daughter to school each day, prepare lunches in the evening, cut the grass, manage our money and investments etc. I have from the get-go never been afraid to tell my DW when I didn't understand something, that I've lost something, or was concerned that perhaps I was seeing the beginning of a new symptom. My DW works between 13-17hrs a day keeping a roof over our head, and I contribute all but up to 300.00 per month from my SSDI directly in to her bank account each month. I use the money to buy groceries or other items we need, go to breakfast while doing errands and other things to keep myself using money and staying connected. I know this won't last forever. I give my DW plenty of time to have outings with her friends, go shopping for herself and the family, and have some of her own interests. The favor I did my family is that when I began to notice memory failure 7 yrs ago I brought it up with my DW, a couple of my doctor's and my Godfather. Unfortunately, it wasn't until I was fired out of a career that was 37.5 yrs long that the doctor's started paying attention. My DW said, don't worry I'll let you know as I notice things happening back in the beginning. We have practiced our Roman Catholic faith together since we began dating about 25yrs ago. Even with two kids in college and one in elementary school, we make time to talk to each other about our day, everyday, maybe it may only be moments, but we stay connected.
I've taken the time to explain to our adult children and DW the treatment I do and don't want. I've told them how important I believe it is that they not wrap themselves around the axle over my care especially when I am no longer able to participate in daily life as we've known it. I want them all to put their focus on their careers, sig others, and daily life. I especially want my DW to feel free to keep moving ahead with her life, and not spend all of her time visiting me, or having to take care of me at home. My DW and I understand what the other wants, and have pledged in the same way as we did on our wedding day to honor each other and respect the other's wishes until the end. I won't say this disease has not put and problems before us, but their is no tension between my DW and me, nor with any of our children. I hope this commentary is useful and will help some of you put your plan together. I turned all of our property and money over to my DW's Trust and gave her legal permission to settle all legal affairs as of two years ago. We are both a peace with what we've done, and have done everything we can to make things go easier on each other and our children. God Bless you all.

I've been at this 3 years but we don't have dad living with us - he is still in his own home and just last month, finally consented to letting care come in. This has taken a toll on my marriage, no doubt. I have spent every Saturday afternoon with my dad for the last 3 years with the exception of 5-6 per year so I'm basically not available on the weekend. My husband reminds me of that all the time. We have the ringer turned off on the phone so he doesn't have to hear my dad or one of my siblings call. I try and keep him out of his as much as possible. It's my problem. Once he volunteered to help my dad at his house (my husband is in construction) but the ended up in a big fight between the two of them so I don't include him or ask him to do anything anymore. Guardianship proceedings are in process which is going to increase my workload. Like I need more to do? I work full time so I will be hiring more help for him. He has the funds but won't spend the money. Yes, it is a strain but I know it is not forever. That's the only thing that keeps me going.

Gradually and reluctantly, during the past 7-8 years, I've found myself becoming more and more my 81-year-old husband's caregiver (I'm 8 years younger). He has Korsakoff's Psychosis, the alcohol dementia, which arose during numerous minor episodes of Wernicke's Encephalopathy, an altered consciousness state which ultimately became serious enough to land him in the hospital for 5 days twice within 3 months time. The last hospitalization was in Tortola, British Virgin Islands, when it was necessary for us to disembark a cruise ship bound for San Juan; and although I managed to "dry him out" on our return home and have kept him alcohol-abstinent in the ensuing years, I still suffer PTSD from that latter incident and refuse to consider any ambitious travel. His inactivity and increasing mobility problems add to my frustration, and since he virtually does nothing besides watch TV and goes nowhere but to his occasional doctor visits, I am also privacy-deprived. While I do love him and freely acknowledge his adoration for me, the relationship has, of necessity, evolved. I've long since come to realize that I can no longer communicate with him as openly and honestly as before -- and although I'm not being in any way devious, I've learned of necessity to hold my tongue. I do handle virtually EVERYTHING now, and have learned the hard way that keeping my own counsel is the best way to avoid unnecessary conflict. It's an ongoing journey involving disillusionment, resentment, trrial and error, and coping ability gleaned from trial and error. Sometimes I wish there was an instruction manual for this! His Mom used to say that gettin' old ain't for sissies -- boy was she right!!

Jf,
God bless you in the years ahead.
You are very smart to plan for the future.

Have you read anything about an Alzheimer's prevention diet?

There are many books on the market that recommend different things (from Vitamins to supplements) to prevent the dreaded dementia. Maybe a suggestion there would slow or stop the progression.

I believe that prayer changes things. Get your name on as many prayer lists through your church (and others) as possible.

You are a courageous man.

Most challenging part in regards to my husband and I- probably already been said- How about an intercom/babymonitor in the bedroom on full blast thru the night? re: privacy issues., So., now that you've envisoned that- we are fortunate to sit down for 5 minutes together in our own home. Our schedules are completely out of sync because I am 24/7 helping mother and when I finish and she is in bed- I am wiped out and ready to relax- Well, he's been waiting to have dinner with me for over 2 hours, usually gives up and eats without me. I would have to say I feel and believe that he feels like he is LAST at this point- and has had to play second fiddle for quite some time. Also has to listen to me spew and discuss the concerns and woes of what is going on-Thank God he is a good man. I don't know too many that would hang around

Dear Lost 247,
I am writing from the patients perspective. I am still highly functional as my neurologist puts it. I can still drive, do banking, make a simple meal. First of all I'm going to send up a few prayers for you. Second, why are you tending to GMIL for 5 years. I'd tell your DH he needs to step it up, it is his grandma. He should be towing at least half of the load. My mother always said she wasn't going to raise any helpless men like my father. My DW and I have always split the chores 50-50. DW has done 99% of the shopping for the last 22yrs, outearned me before I was forced to retire by about 3x, shared in child rearing, house cleaning, and all the other work that needs to get done. I have done close to the same amount of work, laundry, dishwashing, getting up at night with our babies and changing diapers, cleaning bathrooms, etc. Please, I beg you to stand up for yourself, obviously from what you've told us you are an exceptionally hard working woman, between kids, running a business and a household, you shouldn't have to carry such a load. We have two in college and one in elementary school. Before age 12, they had to start doing their own laundry and chores around the house, learn to sew a button on a shirt. Push some of the load on the teens. Unless they have special needs, they should be capable of cleaning the bathroom, taking turns doing dishes and laundry and yard work.
My mother and father were divorced when I was very young, my mother was an RN working all kinds of shifts with 5 kids under 10 and my grandmother helped my mother and the five of us each day. Grandma also made us pick up the load, washing the kitchen floor on our hands and knees, taking trash to the basement, putting water in the boiler for the furnace, etc. Didn't hurt us one bit. I believe it takes a whole family to lift up its weakest members. I believe in this case that is GMIL.
I believe you are a person entitled to respect and help from the entire family. I believe they should help lighten your load. NOW!!!!!!!! I hope this is of some help. These are comments from someone who cares about what is happening to you and doesn't know you. Sometimes it takes someone from outside the picture to shake it up for the benefit of one, that one is you. God Bless you.

My husband and I have talked about the changes he is going through and our feeling for each other have not changed. I have told him that I will be his memory if he forgets and I'll always be here with him.
When he gets frustrated and does not want to talk about it, I'll walk away for a bit and later bring it up again if he's settled it with himself. I've found that if I give him time to reason it out himself, he is much more willing to talk through it with me. And, sometimes it doesn't work and I let it go. But at least with him, we can still communicate our feelings with each other and I consider myself the luck one. Some day, the communication will be difficult, so I take each day as it comes and give him as much support as I can. As long as we are together and he knows I am there, things will be fine. I do not look at this disease as an inconvenience or taxing, but as a continuing change in our life together. I can't fix it, but I can make our life as pleasant as possible under these conditions.

SueC1957,
Thank you for the kind words and suggestions. I did an online video program on the ALZ Diet I believe it was last fall and went on for about 11-12 days. I also read the book written by one of the MD's that was a part of the program. Yes, it was interesting, honest answer, too complicated for me to wrap my head around. I walked away with the idea of buying the food they recommend as well as all the different vitamins and supplements, would require an addition built on our house just to house it. Perhaps, I'm exaggerating just a little, but I couldn't keep track of it, nor am I any longer able to manage that complex of a routine. My DW works 13-17hrs a day as a teacher, keeping things like the mortgage paid, helping out youngest with homework and a myriad of other things. Realistically, she couldn't manage that kind of program for me because, I'm home alone most of the day. I've seen many of your other posts, and your comments have been very helpful. I wanted to respond to you and give you a real reply. I appreciate all you do to help others. I believe i the power of prayer and thank you very much. Return prayers are going up for you.

If it weren't for my wife, I think I'd be in an institution by now from caring for my 90 yo father. He's been with us a little over 2 years now and I can say I absolutely abhor having him in our house.

My wife and I are in our early 60s, never had children, and WERE...!!!!....happily retired till he came to live with us. We spent summers in the north and winters in the south. We lived in a 1br/1bth home and wound up purchasing a larger home as there's no way there would have been room in our small northern home. So, now instead of being retired with no debt, we are retired with a mortgage and an old man. We also had to give him the downstairs master BR and bath as he can't climb steps. We sleep upstairs.

My wife is a nurse and as a child had her grandpa living with them, so her profession and experience gives her more tolerance for him than me. She is just a more caring giving person to him than I am. But, he does drive her nuts half the time too. I treat him as nice as I can, but you know how fathers and sons can be. When I get extra cranky with him and need privacy, I just go to the garage and read or piddle around.

As many people have expressed, it's the loss of privacy, spontaneity, and freedom to go where you want and when you want that is the killer.

We live in Alaska and the winters are cold, dark, and long, and I suffer from seasonal affective disorder (SAD). I do much, MUCH better in summer, but it's a struggle in winter, and is tougher for me now caregiving my Dad. Dad lived in Las Vegas before coming to our house and he is still always cold, confused about dark winters and long daylight summers. In summer, he gets up at midnight sometimes thinking he slept till noon since it's so bright out. We've tried for 2 years to get this thru to him, but he can't grasp the concept. He also just has age related confusion at times, so we fight that one with him.

Luckily, he's still fairly ok to be left on his own for a few hours, but we would not leave him alone all day or overnight.

Not long ago, we decided to start doing "dates" a couple of times a week. We go out just the 2 of us and get away for a few hours. Go for a drive, eat out, go to a friends house, etc. Sometimes it's nice to do something as simple as grocery shopping with just the 2 of us. We used to take him practically everywhere just to get him out of the house, but he's getting to where he can't go as often and many times doesn't want to go (thankfully) as he's getting much more frail. The point is to get out of the house ALONE!

We have also checked on temporary respite care and plan this winter to leave for a few weeks with Dad in the care center. In fact, it was initially his idea, so he hasn't lost all his marbles. Plus, he'll be paying for his own temporary care.

Having Dad in our home has been stressful for both of us, but tougher on me. My wife and I have always had a strong relationship (38 yrs) and she is the real rock in our marriage. And while I despise having Dad in our home, we decided we couldn't let him linger in some chincy nursing home right now. He may have to go one day, but my wife said we need to plan on him staying with us as long as he has most of his faculties and can reasonably still do day to day activities....dress, brush teeth, shower, etc.  We do everything else for him....cooking, cleaning, laundry, linens, etc....etc. If his care gets to be too much physically for us, then it's time to think about a care facility for him.

One other thing we both do, is not let him run the show.  Since he lives in our home, he lives by our rules, whether he likes it or not.  I told him when he 1st came with us that for me, my wife is number 1 in my life, not him.  We'll help you, take care of you, and try our best to give you what you need....but any violence or desparaging remarks against my wife about ANYTHING she does for you will be dealt with harshly....and I think you know what that means.

I can't say enough about how much I love and respect my wife in this undertaking. There will be a day when it's just us again, but when.....who knows?

For me, I feel a breath of relief just writing my thoughts out to you all. It's tough, and only those going thru it know how tough it can be. Caregiving is certainly not for sissies!

My Dad's need for care affected my relationship with my Boyfriend of 16 years. He couldn't understand why I had to spend time with my Dad. Why didn't my brother or sisters help. When I said we shared his care, he said it seemed like I did more. Honestly, I did because my Dad needed help and I lived the closest. When my Dad was hospitalized for an infection and later two surgeries, my BF refused to have contact with me. I sure could have used some friendly help, or just someone to talk to. He left me for someone else, and recently contacted me again to get back together, or possibly just hook up as his new GF is a born again Christian and wont have sex with him. Too bad. I found a wonderful man, and I was with his side as his elderly uncle died, just as he has been right next to me EVERY step of the way with my Dad. My Dad really cares for him, and I love him dearly. We still share my Dad's care but the man who was able to stand with him and help my Dad has my heart. So, I lost someone but I found someone so loving and kind and understanding. We cherish our love. 7 year anniversary coming up. Good Luck and God Bless.

My husband and I are and have been for 30 plus years , best friends. My mother has dementia. She’s 80. She lives with us. It’s hard. Very hard. Somehow we get through it. Even though he works 12 hour night turn shifts. Wants some tranquility when he comes home. Wants to eat breakfast in peace. Oh. No. That doesn’t happen. She’s there in the family room, with Fox News on. We deal with because we have to. She ‘s not “bad enough” for placement. Well maybe with in a year , she will be. But not now. So his mom is 84. Doing very well. Lives in a community of people of her faith. Has levels of care. She’s fine in an independent living apartment. We never ever want our only child to have to care for us , the way we do for my mom. We have decided that in 10 or 15 years , we are going to a place like his mother is in. No burden to anyone. Well. , hopefully.

My mom has lived with us for years and my hubby is the best. But he has about reached his limit as have I. We are actively seeking nursing home care for her cause our health is suffering trying to care for her. She is wheelchair bound and a heavy woman so we can't lift her. I feel trapped.

I am an only child, a son. It wasn't til after my mother was already moved in that I realized what a huge mistake I made. My mother almost caused the disillusion of my marriage when I tried to force fit her into our happy home. My mother can be a crude, unhappy, narcissistic old lady who, as she is constantly telling me, nobody wants. We finally went through the big fight and placed her is an AL using her inheritance from my aunt. Now that place has closed and we had to move her to the only remaining AL in our area that is private and much more expensive. Now we face the uncertain future of if her money will out live her or we will have to find another place when it runs out. She may end up back with us at 93 mild to moderate dementia and inability to walk. I have to keep contact between my wife and my mother at a minimum or the whole blow up will occur again. She has about 16 months of money left. Rock and a hard place.

sorryselma says: "Try to keep your sense of humor, that can be so good for your health and mental well-being. When I find one thing funny about the situation, it makes me realize that humor will keep me sane in this otherwise insane world I have been thrown into."

I've said something like this soooo many times, long before dementia took hold of our mother! Having been through some 'tough' times, one really has to maintain some level of humor... It became almost impossible for me while I was stuck in a hospital for almost a month - I was just about out of any humor, begging them to let me go home (they finally did, with home nursing coming to check vitals, draw blood, etc.) It is the one thing that you have to hang onto! If you feel you have lost any capacity for humor, you need to change the scenery!!

For the others, especially those who have a spouse who doesn't/can't/won't listen or help (esp if it is THEIR relative!) - you need to get these nasty feelings out, so try documenting it in a journal (paper or PC), vent here, find an outlet for it before it can affect what relationship you have left! It is hard to expect someone to help care for a relative that is not theirs, but if you approach it that they are helping YOU, it might work. I do not have a spouse or significant other, but also knew well beforehand that there was NO way I could personally care for our mother (brothers hear the cost of MC and are like wow, for that amount I'll take her - suuuuurrrre, clueless they are! There is NO way either can or would have been able to care for her.) I handle all other issues (finances, arranging repairs and likely the sale of the condo, appts for mom, running her around, getting things she needs, etc etc etc, and even this takes a toll.) Those two? CLUE-LESS!!!! They do NOT understand how much of my time and energy it takes to do all this and take care of my own needs, and have no idea how stressful even just this can be. Both are USE-LESS for the most part. I have heard this song many times on this site!!

It is unfortunate that a combination of cost, lack of funds and sometimes overwhelming need/promises to provide the care yourself results in unhealthy conditions for so many (in-home care-giving at their place or yours, or for spouse.) It is doing so much damage to everyone involved. At least we were lucky enough that dad made good money and they put aside a bit - between SS, pension, savings and eventually condo sale, it will likely provide for her care to the end in a nice place.

For those struggling with juggling care-giving (even just the non-personal stuff like I do) with maintaining one's own relationships (spouse, significant other, children), you *MUST* find a way to take care of your relationships. If you can find a place that offers respite care, use it and do something for yourselves! If you can afford to hire even part-time caregivers to give you a break, even if only for an hour or so, do it! If you have siblings who are not giving their share, task them to take on a weekend (or even a day) just because! Mom/dad or whoever will be gone at some point, but your relationships need to continue after that and need to be nurtured in the meantime. You have to find time to share some good times together without bringing along the baggage!

Taking care of my parents in my home has been a bad decision. It has taken a toll on my marriage. We have no privacy because there are always medical personnel and caregivers coming to the house. We had to cancel vacations. My father would feed the dog from the table even though we asked him not to do so. That was a real source of contention between my husband and my father. I don't think my relationship with my husband can be improved at this point because there have been too many hurtful things said.

As my mom is needing a little more care, I reflect back on the time she spent with her own mother. Mom has 3 siblings. They agreed together to put my grandmother in the nursing home due to falls in her apartment. No one had her move into their home and no one stopped their vacations. Each one and their spouses took turns visiting my GM at the nursing home several times a week along with her many grandchildren. I expect that when the time comes, my siblings and I will probably due the same. I work and my H is semi-retired. When we are retired, we plan to be able to come and go. I love my mom so very much but she nor my MIL will ever move in with us. I will remind both of them that they too never took in their own moms. Hang in there whatever you decide is best for you and your family.

Mom and I went to look at a couple of "rest homes" and I told her NOT to go there because they made it look like getting old was contagious! When I found her in the middle of the night crawling around on her bedroom floor holding a can of hairspray because she thought it was a flashlight, she began to believe me that it was no longer safe to be living alone. I assured her that we would build a mini-apartment onto our house if she would pay for it out of the proceeds from selling her house. 

My mother came to live with us very reluctantly, but we had enlisted the aid of her doctor and her neighbor (best friend) to persuade her, and I arranged for transporting her most important belongings the 600 miles to our home after her beloved neighbor set up a yard sale for her. I traveled with Mom by train, that being the mode of transportation she had used and enjoyed as a young adult, but it was more difficult than she remembered it being, of course.

When she first walked into our home, the first thing she did was to viciously lash out at my husband and our young-adult son. Even though (or perhaps because) she barely knew them, she apparently hated men and blamed them for everything. I daily tried to assure them that I loved and appreciated them for supporting me as we felt our way through this challenge.

At first she ate dinner with us but soon took all her meals in her room and isolated herself as much as possible. I took her shopping, and we had a ramp built from the back door into the garden, where I had planted her favorite flowers. But the most important thing we did was that I spent about an hour with her every evening to watch her favorite TV programs. This became almost a ritual time for me to validate her and soothe her difficult feelings, which was something she had never experienced before in her life. Although she and I had never been close or communicative, I think she began to finally feel loved.

We had covertly installed a "baby monitor" in her room so that we would know if she needed help, and that proved to be the most valuable thing we did, because my husband was able to eavesdrop on our conversations about him and our son, and to hear me being supportive of them instead of "buying into" her accusations and general negativity. I showed Mom that while we couldn't make her happy, we could and would provide security that she could trust. And when she had a fatal heart attack, that monitor allowed us to hear her and be at her side to give CPR in her last moments.

Most of my experiences and comments have been made already by other members.
My husband bears the brunt of listening to me sounding off about Dad,Dad,Dad, it's not fair to him. He is stressed at the total takeover of our marriage with everything "DAD". The constant stress on me has badly affected my health which is putting more onto my husband. Certainly not anticipated.
No privacy!! outings , impromptu time out, arguments or humourous silly time, all awkward now and we HATE IT. Wear and tear on our home with walking sticks, aids of all types, extra laundry, cleaning, the embarrassing tasks of cleaning up after his visits to the loo,, all eating away at time that we should be enjoying together. My husband is 67, I am 62, we're worn out and when will it end?
I can't bear it , we can't bear it but I don't know if I can find peace if I choose alternative accommodation for him.

Lisa, I'm so sorry......
I thought my situation was bad but after reading all of these, it's not as bad as I thought except for the strain on my marriage. My husband is 63, I am 61. My dad is 91. He still lives on his own and will not allow us to move him. His house is not safe for him. He FINALLY started allowing care in twice a week but won't consent to med management which he desperately needs - he's very confused about the meds he needs to take. (I have organized it best I can but he won't use a pill organizer). He still owns his cars but no longer has a license but still drives anyway. I can't take them without a court order or guardianship and the police have been no help. He eats poorly and when I take him to the grocery store, he will not allow me to put better food in his cart (he has PLENTY of funds). Luckily the non-stop phone calls from months ago have slowed down when I finally confronted him that it was not fair to me. My husband is fed up with the whole thing because more of my time is spent managing dad than is on him. Guardianship is in the works but that will only increase my amount of participation. After many months of pushing back on doctors, care manager, adult protective services, and the hospital, I finally relented and started the process. Dad not happy, I'm not happy, but no choice right now. I will never allow dad to move in with us. That would split my husband and I up quicker than anything.

Lisa22 - although it might seem like you would not have peace if you found another living situation for your father, consider that instead of spending your time with cleaning, clean up and all that, someone else takes on these tasks and the time you spend with your father can be more pleasant. Visits, some outings for treats (ice cream, bite to eat, just driving around, etc.) would allow you to try to enjoy your remaining time with your dad instead of constantly battling other issues! It would lessen the need to vent about all that you currently have to deal with, and give you more time to spend with your husband. Sometimes this is the best alternative, if it can be done and is affordable. Choose a place wisely (multiple visits, lots of questions, etc.) I still have a lot to deal with myself, handling everything but the personal care, but prefer that to adding more work for myself!