I am excited to realize that we have been publishing Inside Aging Parent Care for a year and a half now. In celebration of this most recent anniversary, here is our very first post:
For many of us, it begins with a phone call. In our case, the call came from my 89 year old father late in the spring of 2008. He had been released from Waterman Hospital after his third bout with pneumonia a few weeks earlier. “I’ve been thinking,” he said, “why am I here when you are there?”
We had often encouraged Dad to consider moving from his home at an assisted living facility in Central Florida to join us in Denver where Bill and I have lived for the past twenty years. Up until now he had always resisted the idea. “I’ll never leave Florida,” he would say with conviction.
His sudden change of heart pleased me at the same time that it scared me. Long distance caregiving made it hard to sort out just how well or how poorly he was actually doing. The assisted living staff always took the default position that “Frank is doing great!” And yet one hospital doctor had told me in a semi-frantic phone call that Dad would need a feeding tube or would have to be fed by an attendant for the rest of his life.
Part of the time I focused on the plus side of having him closer to us in Denver. We would be able to determine the truth about his condition. Knowing the truth, we would be able to help him enjoy a healthier and less isolated life. I had the romantic notion that with better care and more attention I would get back the dapper and urbane father of my youth. We would attend concerts and lectures together. I might drop in at cocktail hour, and he would introduce me to his new friends. Or I might bring by a thermos of lemonade for us to drink on the patio outside his room on balmy fall afternoons.
At other times I couldn’t stop my fears from surfacing. Where would I find the energy, the wisdom, the capacity to rise to the unknown demands of this new caregiving situation? I had not lived near my father since my college graduation. I had seen him more regularly since the death of my stepmother in 1999, but he had changed so much in recent years. He was frail and shaky on his feet. He was distracted and vague. He seemed diminished in ways I couldn’t understand. Did I know him at all anymore? Could we make a loving connection out of our new roles of caregiver and cared for? Could we really integrate him into our family life? How would his presence and his need impact my ability to work or to carry out the normal activities of my daily routine? Would I be able to care for him adequately and still take care of myself?
There would follow many months of outward questioning and inner struggle before I could address my doubts and fears constructively. Throughout these months I felt that I was failing my father nearly every day. I felt guilty and angry and powerless. I was not living up to my expectations of myself as a mature, compassionate and understanding daughter. I had yet to let go of any idea that I could be “good” or “helpful” to my father. I had yet to begin to face the impact of his situation on my sense of myself now, and on my fears for my own future as an aging person. But as time went by I began to experience a shifting within myself and, oddly, from my father’s side as well.
So glad you are continuing to reach out, Molly. It can get discouraging when things don’t work out right away, but I’ve learned that if I just keep at it, I find the right resources sooner or later.
I am also glad that you are looking at facilities. None of us wants our parents to go into “senior storage”, but there comes a time when an appropriate placement is the only safe alternative.
Our mother Audrey’s partner was diagnosed with Alzheimers. He was fine at home as long as she was there to take care of him. Unfortunately, she had her own form of dementia, and when she broke her hip and went into nursing home care, Bernie could not cope, even with the in home health care that they had been receiving for some time.
Eventually he menaced one of the aids with his cane and beat on her car to scare her off. Everyone agreed sadly that he was no longer safe on his own. He went into the nursing home where Audrey was being treated for her hip, and they shared a room there until his death some time later.
I think some people are much happier with nursing home care than they are at home. There are companions of their own age and things to do at their level. When Mom got used to it, she was very happy which was really nice to see.
Hi everyone,
I’ve been absent for a couple of weeks because things have begun shifting around my house again. Visiting this site is on my list as I need it very badly, but once again, the role of caregiver has taken the front burner and the needs of the caregiver have gone to the backburner. The problem with this is when the caregiver burns out and is no longer able to be in the role of caregiver…. So I am not trying to complain, only say that we’re back there again where if I don’t take time for and navigate this process with support, then I will not be able to be much of a caregiver.
We had a week respite with Dad where he went to stay with family and it astonishes me that it has only been 16 days since he returned because so many things have happened. It feels like months have slid by. First, he announced that he wanted to divorce my mother and a bitter battle ensued, with “guess who” in the middle. He believes there are financial accounts that do not exist and that we are hiding them from him. That was the first week of his return. Then he tells me he is no longer able to dress himself and so I search for a caregiver to assist. I find one the following day and we meet with her a few days later. This was last Friday. She and I set up a schedule for her to help and I continued looking in to resources. That night, Dad became suicidal (I think his sense of hopelessness was set off by the actualization of a caregiver coming to dress him). He has decided that since I control his medications that he will walk out in front of a car, the one thing I had not thought of. Being Friday night, I called the crisis clinic and they were of no help, even telling me “Maam, we have been on the phone for half an hour and there is nothing else I can tell you.” They told me to call hospice, but he doesn’t qualify, of course. Being a weekend there is nothing else to do except keep vigil on the couch not sleeping because I am waiting to hear him try to leave the house to find that unfortunate car. Monday (yesterday) rolls around and my aforementioned caregiver quits before ever starting, her life is too busy. I found this out in the early afternoon and felt fortunate that an agency was out here within two hours to set me up with services 2 hours a morning to dress him, but they can’t start until Thursday. In the meantime, I have follow up doctor appointments for myself which need to be cancelled because I don’t have care. Yes, I lost it. I could hear dad sobbing through the floorboards because he could not dress himself while I myself was upstairs sobbing and trying not to upset him. And bless my friends for coming over immediately, dressing Dad, and stepping in and remaking those appointments “urgently” and driving me there. We put Dad in daycare for the day, and when we got back from the appointments I had strict orders to medicate myself and get some sleep, so another friend came in and sat with dad and my son for 4 hours while I tried to sleep off all the meds I took.
I believe that all medications have their place but I do not like to take them, nor does my dad. I had horrible reactions to the other drugs I was given two weeks ago so I had to stop taking them. I am now on new drugs and not too happy about it. Being married to a police officer who is currently working nights, I cannot take sleeping pills. But the doctor and I hit a middle ground where Dad would be on sleeping pills instead so I could be rest assured he was sleeping and safe and perhaps I could get some sleep in the meantime. So I medicated him tonight without his consent or knowledge because I knew he would not take them. I feel tremendous guilt about this but I need to sleep too.
This is the hardest thing anyone will ever do. Or at least it is the hardest thing I have ever been called to do. I am trying not to get my hopes up about other caregivers I am interviewing tomorrow because I was just let down, but I have no choice but to keep on going and keep tryinig. At least the dressing and bathing will done and we can bite off another chunk after that. It really is one step forward and two steps back, but I have faith we will figure this dance out eventually and have enough care to give me a chance to catch my breath. More phone calls tomorrow and then I plan to check out a facility, it’s rumored there are waiting lists and I think I need to be one one. My heart breaks for Dad. I can’t imagine being in his shoes, and I hope I never am. People tell me to put him in day care and have all kinds of advice, but this is my parent and I love him. I don’t want to “warehouse” him, if he is going to a facility, it needs to be the best place for him. Thanks again for your blog and sorry for yet another vent session!
I am Betty’s daughter-in-law and she directed me here. My father lives with us and he suffers from a rare brain disease that took his vision very quickly and the dementia followed just as quickly. The day to day differences are mind-boggling. I am 33 and have a six year old child. I never envisioned that I would be a full time caregiver for my 60 year old father at this age, but it has happened. I could write chapter after chapter on here of my daily struggles but I will restrain myself
It often comes across as complaining and it likely is. We are still early in the transition phase but it seems once we have transitioned, Dad makes another transition and it an ongoing battle that is testing both my sanity and overall health. Dad first started coming to stay with us May of last year for a month at a time, but came here permanently January 1 of this year. We are fairly isolated where we live and a caregiver support group has not yet materialized. But in all honesty, I do not know when I would find the time or the energy to attend if I found such a group. I am in the final week of obtaining my Master’s in Counseling Psychology degree and have attended additional trainings and classes in the hopes of being more prepared, but I don’t feel like I am any more prepared to deal with this than anyone else. I am also finding that my friends (of the 20-30-40 age group) who have never had to deal with this are really unable to support me, they have no idea what my daily life has become and cannot identify with me any longer. I have been invited to social functions and had to decline because I have no available caregiver and they want to send their 13 year old daughter over to babysit so I can go tear up the town, but then do not understand why I am still declining the invite. This has felt very isolating because I have few people who can empathize and truly understand the impact this is having on my life.
My stress level over the last year has increased to the point of physical illness. Last summer I was sent to neurologists and for MRI’s because I got a blinding headache that lasted for 3 months and did not respond to any OTC pain medication. Since January, I have stopped sleeping, developed heart palpitations that have had required paramedic response, begun having daily panic attacks, and for the last 6 weeks have had stomache issues that leave me nauseous and have me vomiting daily. I luckily share my doctor with my Dad so she is very understanding and I walked out her office today with 7 prescriptions, gave a gallon of blood and she wants a follow up in 2 weeks. And strangely enough, I feel like she is my new best friend, because at least she understands why this is happening and is willing to hold my hand through the process of helping me find a way to function through the stress and make me strong enough to continue to care for Dad. That was the best appointment I ever made. And I think I may sleep tonight for the first time in months! (Since I am “on duty” all the time, she gave me trazadone, which she swears will allow to me shut the brain off and still wake up if I am needed, and no sleeping pill “hangover” – wish me luck on this! I am testing it out while my husband is home so we don’t have to worry that I will not be able to get up.)
On my darkest days, I feel like we are just rooming Dad until he makes his final transition. This is both depressing and defeatist. His body is young, but his mind is not there. The confusion and blindness are a nasty mix. He can still bathe and clothe himself, and feed himself (for the most part) and I am dreading the day, very soon, when this is no longer so. But everything else has to be done for him. We cannot leave him for more than a couple of hours which is impacting my ability to earn a wage. Even then, it’s a crapshoot, we have good days, not so good days, and horrible days, where I come home to find a handle off the bathroom sink missing and water spraying everwhere and flooding the bathroom. The stories are endless… Like I said, I could write chapters, and apparently this is turning into the first one, lol.
As we go along this journey, I am learning. I now know not to take things personally, to not take things he says at face value (because they will change tomorrow and again the following day etc.) But it hasn’t been easy. I have also learned that I have taken on a significant role and that if I am to be there to care for Dad, my child, and my husband, I need to take care of myself as well. Because as the old saying goes “If momma ain’t happy, ain’t nobody happy”. Except in this instance “If momma ain’t taken care of, ain’t nobody taken care of.” Tough lesson to learn and I need to get over my guilt about not being 100% with everything I do, 100% of them time. Now if I could just get everyone else to understand that!
Thank you for your blog, I will be a return visitor. I truly appreciate what you have done and Judi promised you would have some great tips on caregiver burnout, so I’m keeping my eye out for them! Because if anyone needs a little saving grace right now, that would be me. I look forward to following you through your journey as well. I hope we can all provide a little support and perhaps some comic relief when we all need it most.
Molly
Molly, I continue to be impressed with your spirit and resilience. I am so glad that you have been to visit your doctor, and that you will keep up with her through this difficult time. This is the beginning of a support system that will work for you. Keep reaching out. Carol
Thanks so much for your comment, Betty. It is wonderful to hear another side to caregiving. Your story is an inspiration. Carol
Bill and Carol, this is a subject that almost everyone I know is experiencing in one way or another. I was 13 when my mother passed away and a few years later my father had a mild stroke. I became his caregiver from then on. He recovered from the stroke and I married and had children, my father lived with us for 23 years before his death at 86. I was very fortunate because he never lost his mental ability, he was sharp at a tack to the day he died. I was luckier that most because I did not have to watch him deteriorate and he was a positive addition to my children’s life growing up.
Your experiences will help so many people that are going through exactly what you are going through, feeling inadequate in knowing what to do next. Thanks for your wonderful blog.
Fran’s Dad is 91 and in good health for that age, her Mom is 88. My Mom is 77 and has OCPD with some other minor problems.I don’t know what the future holds but I take inspiration from you both to give of yourselves to your Dad. God has given you back what you least expected. I pray we have the courage to do the right thing if the situation arrises. Bless you,
Dave Hogan
Dave, we are honored to have you and Fran join us on this blog. You’ll be interested to know that Bill will be publishing his first post in a couple of days. Thank you so much for your kind thoughts and blessings. We look forward to sharing the journey. Carol
Carol and Bill,
Thank you for your honesty. What are we to do but resist labels in these situations. The labels only give a brief interlude of false security. It is so humbeling to sit with ones parent during these times of uncertainty and changing roles and confusion. I think of my own times just recently of dissociating when under stress (public speaking). Not comfortable but kind of natural under certain circumstances. Totally uncomfortable to watch a parent do that though. We don’t want them to go away. Where do they go and why? Aren’t these such old and yet young questions? How are we to be in relationship through all these profund shifts? This blog is making me think and explore some things that I am on the precipice of with my own folks. Thank you for inviting me to this forum. A place where we can share in our journey with others. Melinda
Thank you Melinda for your thoughtful and empathic comment. You are right, this experience is one of the most challenging of my life. I feel like I am just beginning to take some baby steps toward understanding, not just understanding my father, but understanding something of myself and the many unexpected reactions that rise up in me. I know, as you point out, that these responses are not unique to me, which is why I am so grateful to have you on this journey with me. Carol